Butterfly: Let’s Talk podcast

Lauren Franzon-Rafter

Something that helped me to accept my changing body during recovery was thinking of all the things that I gained other than weight.

Chris Fowler:

They have found some strong genetic links to eating disorders with families. A study in 2019 found there are eight genes that can influence anorexia.

Anila Azhar:

Those who have a family member with an eating disorder, are seven to twelve times more likely to develop an eating disorder.

Dominik Wilkowski:

You need to replace it. There’s a skill that you have to learn, a coping mechanism that you have to acquire in order to replace it.

Sam Ikin:

This is a special episode of the Butterfly Podcast, your national voice for body image issues and eating disorders. I’m Sam Ikin. And in this episode, we’re going to answer some of the questions that we get from you, our beloved audience. I’m not going to be answering them for you. I’ve pulled together a team of experts and people with lived experience who know a whole lot more than me.

Sam:

But what I can tell you, is one of the things that’s become extremely evident to me since I’ve been creating this show, is how effective talking can be. Hearing from people with a lived experience talk about their successes, their struggles, and even their failures has helped me relate to my own struggles with an eating disorder and all the longstanding body image issues that go with it or come before it, or whatever the case may be.

Sam:

I still have an eating disorder, but I’m really hopeful that recovery is the place that I’m heading. Making this show puts me in contact with some amazing people who’ve already been there along with some of the country’s top experts and I’m just so grateful that this is something that I do. Anyways, it’s enough about me. Let’s get on with the show.

Dominik:

Hi, my name is Dominik. I used to have an eating disorder and I often go to support groups. I guess… I don’t exactly know how to introduce myself!

Sam:

Dominik is an old friend of the podcast. He helped us back in episode seven, navigating the festive season, and we’re really thrilled to have him back to help answer your questions.

Dominik:

I had an eating disorder probably about 15 years ago. Something that I found out much later, I didn’t realize at a time that it was going down a path that was probably not very healthy. I have been going to support groups and therapy for this for a couple of years and feel like I’ve completely recovered, to the point where I don’t really think about food anymore when I eat or when I don’t eat.

Sam:

The first question comes from Steph. She got in touch with us through Twitter and she says, “Why do I sometimes feel like I miss my eating disorder?” And I’ve heard this from a few people. One of our guests even said that she grieved the eating disorder.

Dominik:

That’s a very common thing and I really like this question because it shows it… it goes into the mechanics of eating disorders very deeply. I think it helps other people that may have never had an eating disorder, have never heard of it, to understand it a little bit better. An eating disorder is something that helps you cope with your emotions, with something that is uncomfortable. So you want to… you need to replace it, there’s a skill that you have to learn, a coping mechanism that you have to acquire in order to replace it. That’s a learning thing and learning is hard. Learning a new thing is always hard. So we often grieve. We often miss the eating disorder because it was simple. It is something that we’ve done for years to use, to cope with something that we didn’t know how to handle any other way.

Dominik:

And it’s a really important period in the recovery of someone who’s recovering from eating disorders that you have to look out for as a carer or as you yourself, as the affected person, because it can often lead into somewhat of a dark hole. I’ve seen it where people become depressed or other things bubble up because in the void that has been created by us taking the eating disorder away, you’re helpless, you’re swimming in an ocean, never learned how to swim.

Chris:

When it comes to perhaps using behaviors as a way of coping with stress or managing stress.

Sam:

So I’m bringing in an expert. Now, this is Chris, who has worked with the Butterfly Helpline for years.

Chris:

I started at Butterfly about six years ago now as a supervising counselor and the helpline. Previous to that, I worked at an age, sort of inpatient setting, and I guess that’s where my interest in and passion, I guess sort of grew, I guess, in terms of supporting people and helping people in their recovery journey.

Sam:

All right. So, onto to the next question and Sky who sent us an email asks a really interesting question. She says, “She’s been diagnosed with an eating disorder, but she can see a lot of similar behaviors in her Mom, but the Mom’s never had a diagnosis.” Is there a genetic link to eating disorders or I guess alternatively, are these behavior patterns something that you can learn from a young age?

Chris:

Yeah. Good question. I guess that can be certainly a bit of both then. There’s actually a lot of research being done into the genetic links of eating disorders and a lot of research done in Australia. Andthey have found some strong genetic links to eating disorders with families. A study in 2019 found there are eight genes that can influence anorexia.

And that’s not to say that in this [inaudible 00:06:15] situation, that this Mom has, or doesn’t have an eating disorder. Like most mental health, visible illness with genetic links, just because a family member may be impacted doesn’t mean that you will be too or vice versa. There are a lot of other factors, as you mentioned that might be related to [inaudible 00:06:32] environmental, social, psychological factors that can all create a bit of a perfect storm, I guess, which may be the catalyst for someone to develop an eating disorder.

Sam:

Now it’s time to meet another one of our experts. This is Anila, she’s a clinician who also works with Butterfly.

Anila:

I currently am the team leader for their virtual youth programs. So I’m in private practice currently. And I’m also here at Butterfly.

Sam:

The first question for Anila is one that we’ve had a lot of versions from, but the first one we got was from Deepak, who sent us an email. She wants to know what the connection is between perfectionism and eating disorders.

Anila:

There’s much research on perfectionism and its potential links to eating disorder onset. However, the difficulty is that although perfectionism and eating disorders certainly seem to be correlated, we don’t actually know if one leads to the other. So, some research suggests that people with eating disorders often display perfectionistic traits before their eating disorders began. But what we are a little bit more sure of is that perfectionism may be a risk factor. And if they’re maintaining practice over eating disorders. What we see and I certainly see this in my rooms too, is that long after recovery perfectionism remains. So I think to try and draw the links, I think it’s probably best to try and firstly define it. From what I see, perfectionism has no universally accepted definition, so that complicates it slightly. But the literature shows us that some of the behaviors that are commonly associated with perfectionism include… what you kind of traditionally see with the increasingly high and unrelenting standards, fear of failure, procrastination, reassurance seeking, and a real black and white thinking style.

Sam:

The next few questions are best answered by somebody who’s been there in the thick of it. So we’re going to go back to one of our amazing lived experience people.

Lauren:

Hi, my name’s Lauren. I’m a Social Worker. I work in mental health and I identify as having recovered from an eating disorder. My eating disorder initially developed when I was 12 years old.

Sam:

A lot people that I speak to with the lived experience, talk about regretting the time that they’ve lost, where they were caught in their eating disorder. They’d love to go back and do it differently. Of course everyone would, was your lived experience, is that something that has had a dramatic impact on your life?

Lauren:

Absolutely. I’m 30 now. So my eating disorder consumed the majority of my life to date, but I honestly wouldn’t change anything. Obviously you’d rather not have to go through that to become the person that you are today, but I’m very thankful to be who I am today. And if I hadn’t have experienced what I experienced, I wouldn’t be in the position I am now to be able to help others.

Sam:

What a lovely way to look at it. So the first question we’re going to throw at Lauren comes from Mike. And Mike, thank you for your email. Mike wants to know, is body image just about your weight?

Lauren:

In my experience, no, it’s far more complex than that. I think if it were that simple, then losing weight would improve body image, which is not the case. Body image distress can be experienced at any size. And what really makes up body image is the attitude that we have towards our body. So that’s why we can experience a bad body image day one day, and then the next day experience a good body image day. It’s not that our body drastically changes in one day, it’s the attitude that we have towards our body.

Lauren:

So I think that improving body image is not about losing weight, but shifting our focus away from the physical appearance of our body. So something that helped me to accept my changing body during recovery was thinking of all the things that I gained other than weight. So I was gaining freedom around food. I was gaining cognitive space to be able to think about things other than food and exercise. I was gaining the ability to be in the present moment with friends and family. And I think it was this shifting focus that stopped me, equating my worth with weight and actually helped to improve my body image.

Sam:

That makes a lot of sense. All right, the next question comes from Susan. She says, “How do I know if what I’m experiencing is an eating disorder?”

Lauren:

I suppose one thing I kind of want to state first is that it’s a common experience to feel that you’re not sick enough when you have an eating disorder, but this is actually a very big red flag that you are sick enough. I think that this thought is partly due to self-denial or feeling unworthy, and also the normalization of eating disorder behaviors due to diet culture.

Lauren:

Some warning signs that you might have an eating disorder, which I learned about as I began to educate myself on eating disorders, which I personally could relate to, were having rules and rigidity around food. So “I’m only eating this at a number of calories per day”, et cetera. Other things that I experienced was anxiety about eating food that I personally hadn’t prepared because I didn’t know what was in it. Hyper awareness of my body. Preoccupation with food, so thinking about food all the time. Engaging in body checking behaviors, so like frequently weighing yourself or looking at reflective surfaces all the time. Working out or restricting to compensate for eating or to earn your food. I think these are all warning signs that you may have an eating disorder.

Lauren:

But one thing I definitely want to say is that whether or not you experience these signs, or whether you really experience one or two of these signs. If you experience anxiety around food and eating and exercise and your body, and this anxiety is impacting your quality of life, then you need and deserve to get support regardless of if it’s a diagnosable eating disorder, you need to get support.

Sam:

The next question from Audrey came through Butterfly’s Instagram account. It’s a very good question. Is recovering from an eating disorder, like recovering from an addiction? You’re never sure if you’re ever cured and you’ll always be more susceptible to relapsing. And for this question we’ve brought in Archana, she’s the support programs coordinator and Facilitator at Butterfly.

Archana Waller:

I guess, recovery from an eating disorder, it involves overcoming physical, mental, emotion barriers, so that one can restore normative behaviors or some behaviors and habits. There is no such time for recovery from something like an eating disorder, everyone recovers at a time and at a pace that suits them. It’s very nuanced and it’s not uncommon for the process to slow down, even come to a halt completely or to encounter relapses. So, that it’s very much clear that the person can be susceptible to relapsing. While this can be really frustrating, it can help to remember that with recovery as an ultimate goal, even the setbacks can be a really valuable part of the journey. So, with the appropriate treatment and a high level of personal commitment, recovery from an eating disorder is achievable. There can be similarities because they’re also trying to recover and there are other relapses. And I guess that’s… From that eating disorder point of view, yes, recovery is not linear. In fact, no recovery is linear. You know, it’s a back-and-forth process.

Sam:

And as we’ve heard before in the podcast, it’s something that we’ve heard more and more, eating disorder Clinicians say that full recovery is possible.

Archana:

And again, given that you have that appropriate treatment, a level of commitment, there are many other factors that are also put into that space for that recovery to take place.

Sam:

While we have an expert like Archana on the line. I thought I’d ask her one of our tougher questions. We’ve said before that eating disorders like other mental illnesses rarely exist alone. And that leads us to this question from Frank. He says, “Hi, my grand-daughter has severe depression, is suicidal, has eating disorders, has body image disorders and she’s only 16. What can I do other than heaping love on her which does not appear to help, as a grandfather, can I make her better?

Archana:

It just shows, I guess, how an eating disorder or any other mental illness can impact family and extended family. It’s not just the person who’s experiencing it. So, seeing a loved one struggle with an eating disorder can be painful, can be confusing and overwhelming. Especially because there’s so much unknown around eating disorders as well. So I can understand the concern and confusion is what do I do? Am I doing the right thing? Am I not doing the right thing? Those are some of the questions we often get. And I guess the basic aspect of this is that family support is foundational to an individual’s recovery process. So, one of the things that perhaps this grandfather can do, it’s just making sure that they communicate how much they care and love their grandchild because that unconditional love is… you kind of underestimate how powerful that can be for a person who is going through their journey with the eating disorder recovery.

Dominik:

It’s heart wrenching, this question. Absolutely heart wrenching. I thoroughly believe he can help. Absolutely. And the first step is to be there and heaping love on top of that person and create spaces where they feel comfortable with themselves. That doesn’t go super far. It’s really hard and really depends on an eating disorder, depends on the granddaughter, depends on the age. 16 is also difficult with or without an eating disorder. It really helps to find these moments when someone isn’t currently in eating disordered behaviors, there are moments when you feel a little bit more at ease with yourself and these moments we usually take to not talk about it because it gives us a little bit of a pause as carers. You don’t want to bring it up because you finally don’t have to talk about it, but it is a really good moment to have a frank conversation. To say, “Hey, you know what, I am worried about you. I want the best for you. How can I help? What can I do for you?” And often people with eating disorders will open up in that moment.

Sam:

So we’ve got time for a few more questions and I think we’re going to go back to Anila for this one. Zara asks, “Can you ever get to a point of not feeling anxious around food and if so, what’s that like?”

Anila:

That’s such a tricky question and honestly, it’s probably one of the first things I get asked every single time someone does seek treatment. It’s a really difficult one to answer. I think the trouble is that we live in a weight obsessed worship of this thin ideal culture. It’s really tricky to eliminate the noise on it and it’s virtually inescapable. However, recovery is absolutely possible from every angle. The anxiety around food has been seen to eventually subside in time and I think that’s the key here, that just to give it some time. It is a really long-standing thing that may have been established in an individual over several years. We know that it typically starts in adolescents. So, to eliminate that anxiety can often take some time and potentially even years.

Anila:

The other part of this that’s really important to note here is that an eating disorder is usually a symptom of an underlying condition or trauma. Usually it develops to survive something else. So when we have enough distance from that thing that we are trying to survive or looking to survive, whether it be another mental health condition associated with trauma or otherwise, or other interpersonal difficulties, for instance, the symptoms tend to fall off along with it. Including the anxiety that’s associated with food. But I do find that, that is probably one of the last things to drop off.

Sam:

And the final question we’re going to throw back to Chris, and it’s a bit of a tricky one. Cody asks, “How do you approach someone you suspect might have an eating disorder or a body image problem?”

Chris:

It would be a few things to be, I guess, mindful of when you’re approaching someone. You know certainly approaching at an appropriate time is a good start. Maybe have a conversation where it isn’t at mealtimes or around food. Because they could already be sort of, I guess a stressful time for the individual. As well as, perhaps with all new conversations that person already seems emotional for whatever reason, or even stressed or tired as well. But when you are perhaps going to have a conversation where you’ve found that a good time to have that, I think trying to have the conversation, not solely about food. Coming from an open or non-judgmental place, but focusing on the general being, and their mood. As well as their physical health but trying not to make the whole focus ‘food’ because it can be quite confronting, it can be a little bit of embarrassment, or shame or guilt associated that might mean that person shuts down as well.

Chris:

Let them know that you’re concerned, you’d like to support them in that moment and that’s perhaps why you’re raising that concern. There might be defensiveness or denial because the conversation can be overwhelming. But you can always sort of say, “I can see this conversation’s a bit too much at the moment. It is something I want to bring up again or it is something that I am concerned about. We can leave it there for the moment, but I’d like to bring this up with you again.” I’m going to think those sorts of things, you should keep those sorts of things in mind. There’s no real right or wrong. And if you have made a gross sort of error in a sense, you can admit to that. Say, “Look, I’m not really sure how to approach you at this point, but I am concerned and I’m willing to be here every day, I’ll help you or support you if that’s what you are needing at this time.”

Sam:

We have so many more questions. We’ve only got to a fraction of the ones that we’ve been asked, but unfortunately we’re running out of time. And I’m sorry about that. But we will finish off with the one question that we’ve been asked the most. We’ve had many questions that are something along the lines of, “I think I have an eating disorder, where do I go to get help?”

Lauren:

Go to the Butterfly Foundation website. That would be a great place to get some education, to find out about other resources, to find out about supports in your area, because obviously it would vary between States.

Anila:

Butterfly’s helpline is an excellent resource, actually in assisting those struggling to find a suitable Practitioner in one’s area.

Sam:

To get to Butterfly’s website, go to butterfly.org.au. To get the Butterfly National Helpline, call 1800 33 46 73, that’s one 1800 ED HOPE or you can email support@butterfly.org.au. If you have any more questions, please drop a line to Butterfly’s, amazing communications team. You can get them at C-O-M-M-S it’s comms@butterfly.org.au. Don’t forget to subscribe to the Butterfly podcast and rate us five stars. And if you’ve got a minute, leave us a comment. The Butterfly podcast is an icon media production for the Butterfly Foundation. It’s written, produced, edited, and hosted by me, I’m Sam Ikin. But I don’t do it by myself, Camilla Becket and Kate Mulray provide an amazing amount of support. That theme music is from Cody Martin. Additional music is from Breakmaster Cylinder. And we’d like to thank all our guests in today’s Ask Me Anything episode, Dominik, Chris, and Anila, Lauren and Archana, thank you so much for your time. Finally, if you know someone who you think could benefit from this podcast, please share it with them. You can find it wherever you find podcasts.

Nyibeni Naam:

All the media that I consumed from Neighbours, to Home and Away to Dolly magazines, essentially reaffirmed that my body is not what you would call Australian.

Anne Smith:

I was at an all-girls school and then I went to a high school and there were boys there. And I think that threw me quite a fair bit. And that’s when things sort of went downhill.

Kelly Griffin:

No child should ever see their parent go through this, and go through the anguish, and the mental and the physical aspects of an eating disorder.

Nicki Isaacs:

We’re seeking compliments but people are actually opening themselves up to criticism as well. And we know that body bullying is a real risk factor for the development of negative body image.

Anne Smith:

If I had of just accepted and loved my whole self then yeah, I don’t know what I would have done…

Sam Ikin:

One of the things I hear a lot from guests that we have on this show who have a lived experience of eating disorders or body image issues, is that they really don’t want to pass those problems onto their kids. Body dissatisfaction is one of the highest risk factors for eating disorders. The troubling news for those of us who are parents, is that more and more young kids are telling us that they’re dissatisfied with their bodies.

Sam:

As a parent, who’s been affected by an eating disorder, it’s one thing to say that we don’t want our kids to follow in those footsteps, but actually protecting them from it is a whole other story.

Sam:

In this episode of the Butterfly podcast, we’re investigating how we can change the picture for kids.

Nicki:

There’s more diversity these days, I believe. I think there’s still a very narrow range, but it’s not only about the thin ideal. In certain areas and contexts, it might be about a curvaceous body or an hourglass figure.

I’m Nicki, I work at the Butterfly Foundation. I’ve been there for about five or six years, and I’ve been a psychologist for the last 23 years.

Nicki:

There’s no end to the Instagram scroll. There’s no end to the TikToks that they can watch. We have got access to celebrities, lives that we’ve never had access to. We have access to so many different things through social media. And a lot of the time, what we’re looking at is not even real because we’re looking at images that have been photoshopped or filtered. We’re looking at our friends having the time of their lives. Often, we’re comparing our most vulnerable, lonely self to our friends.

Nicki:

Pre-COVID, it was sitting under a palm tree on a wonderful holiday. These days, people haven’t been traveling as much but they’re still really generally posting photos of themselves where they look really happy and look like they’re having the time of their lives. Or they look, in inverted commas, hot. So they’ll post a photo of themselves looking hot and invite lots of comments on their appearance.

Sam:

The pressures on kids to look a certain way are not new. They were there when I was school, and they were there when my parents went to school and probably when their parents went to school. But the intensity of those messages about how we should look and how we should be eating have intensified. They’re far harder to escape.

Kelly:

Yeah, it was a very different world 20 years ago. If I look back at the internet boom, you know what happened back then. It was completely different to what we’re seeing today. My name is Kelly. I am …what am I now? A 44-year-old male. Single dad; got a couple of kids.

Sam:

Kids are extremely vulnerable. And exposure to restrictive dieting, extreme exercise regimes and hearing adults or schoolmates talk about their appearance concerns quite a lot, can lead to body dissatisfaction and other mental health concerns.

Kelly:

I was always the really skinny kid as I was growing up. I’m pretty small and I’m pretty short. I was never the sort of the tallest guy going around. I was pretty fit and athletic, and I love kicking the footy and stuff like that. Unfortunately, I could never play footy that well, purely because I was just never the biggest guy on the field and just didn’t have that power or strength.

Kelly:

And so that as you’re growing up and hearing your family talk and say, “Oh man, look, check you out. I’ll call you roadmap.” That’s what they used to call me. Because as a little kid you’re running around in the backyard with no t-shirt on, for example, it’s the middle of summer. And all you can see is veins across your chest and stuff like that. So yeah, the messaging there that I always got was “You’re really skinny, you’re roadmap. Do you want to be tiny?” It’s like, “No, I want to be big! I want to be buff!”

Sam:

So, going back with what you know now, what would you tell your younger self? And I guess your kids now?

Kelly:

I wish that I could tell them that confidence and value don’t come from the way you look. It’s the type of person that you are, the type of person that you want to portray being and the values that you partake with and then also share with other people as well. It’s got nothing to do with the way that you look.

Sam:

The studies tell us that if you struggled with body image as a kid, or as a teenager, you’re far more likely to carry those feelings with you into adulthood. And then you’re far more at risk of developing more serious body image or eating issues.

Danni Rowlands:

Appearance and image are still such important, important things in our society. And that’s not helping people to feel comfortable or happy in their bodies.

Sam:

You might recognise that voice. We’ve had her on the podcast before, that’s Danni Rowlands from Butterfly.

Danni:

I’m the national manager of Prevention Services at the Butterfly Foundation.

Sam:

Danni’s career is dedicated to helping prevent those feelings of body dissatisfaction early on, reducing the chance of them becoming more serious cases of body dissatisfaction or even eating disorders later in life.

Danni:

It unfortunately starting younger and younger. We’re hearing from primary school aged children and families of primary school aged children that they’re hearing that they’re body shaming themselves, but also other young people. There’s obviously restrictive eating as a way to manage all of that. So we are seeing it earlier and earlier, and there’s lots of factors that play into why that happens.

Danni:

Social media is a big game changer in the body image space. And that of course happens earlier and earlier, but also just, I don’t know…Everyone seems to be pushing older thinking and more mature thinking and behaviors earlier and earlier.

Sam:

I’ve mentioned parents and the role that they play in building resilience in their children, but parents aren’t the only adults that can have a significant role in the child’s upbringing. In fact, in many communities, other family members and close friends can be just as important in terms of role modeling.

Nyibeny Naam:

My name is Nyibeny Naam, I’m 30 years old. I came to Australia when I was nine and grew up mainly on the mid north coast; Coffs Harbour. When I first ever became conscious of the notion of body image, and I guess the first moment I can really pinpoint was probably around the age of 10. So, we’d been in Australia for about a year at this point. And by the time we came here, we weren’t really sort of aware of the differences in nutrition and the kind of foods they’re eating here. Our weight really fluctuated really quickly. And at the same time, sort of adjusting to a new country, adjusting to a new environment, meant that having to learn a whole new language and learn a whole new way in terms of how society operates. Now, when we came to Coffs Harbour, our family was the only African family for the first two years there.

Nyibeny:

And so the kinds of bodies that I saw didn’t really look like mine or my siblings. And if you can imagine, Coffs Harbour is a beach town. So, the kind of in look was tall, tan, lean, blonde. All attributes were most likely we’re never going to meet in its entirety. I could meet lean, but I couldn’t do blonde. I’m a dark-skinned African girl and not having your own body image reflected in society that you see, it’s not something that you think would be detrimental as a child, but looking back on it, all the media that I consumed from Neighbours, to Home and Away, to Dolly magazines, essentially reaffirmed that my body is not what you would call Australian.

Nyibeny:

And that really kind of did a number on myself and my sisters, I think more so, because especially going through that puberty phase, you’re starting to like boys and all of this, and to constantly have this reinforced that you are not what’s considered the norm or attractive, just really started wearing on our self-esteem.

Nyibeny:

One of the messages that really kind of stuck out, and this is more to looking at it from sort of a media portrayal in society was, when I did see my body reflected in media, it was largely through things like music. Rap music or international modeling or sport. And so it kind of really sent home that there was only three separate types of ways to be a black girl. You either were in a music, shaking your butt, or walking on a Victoria Secret’s modeling campaign. Both which are very wide views of what it means to be attractive or normal.

Danni:

We also need to keep challenging the objectification and self-objectification of people. I will say people now, when I was younger was absolutely more around females, but as time has progressed, I think we now say definitely with males as well. And so we need to make clear that this is a non-gendered issue and also start to really build protective factors, particularly in young people. We need them to be strong with their social media literacy skills and media literacy skills and manage the resilience and body resilience so that when they’re in these tough times, that they’re not taking out stressors and discomfort or uncomfortable emotions out on their body and the way that they look.

Danni:

We absolutely need to dismantle this toxic diet culture that infiltrates everywhere.

Anne Smith:

My name is Anne. I live in Adelaide. I have a partner and two beautiful children. Grace is three years old and Aiya is almost one. I love being a mom. My lived in experience goes back about 15 years. I was in year nine when I really started struggling with body image issues. Yeah, that’s sort of where it all began.

Anne:

I was at an all girls school and then I went to a high school and there were boys there. And I think that threw me quite a fair bit. And that’s when things sort of went downhill and body dissatisfaction was probably the biggest thing for me and comparison as well. Yeah, it was sort of a downward spiral from there.

Sam:

So when we say that these feelings of body dissatisfaction carry forward into adulthood, Anne’s first eating disorder behavior appeared when she was 15 and the most recent one when she was 30. But becoming a parent was the catalyst that motivated her to make some real changes.

Anne:

It wasn’t until I really realized that, “Hang on a second, I’m still doing that to relieve stress.” And that’s when I realized that I really needed to just stop it for good. And it took being pregnant to actually make that decision. So even though I’d already become a yoga teacher and I’d already run retreats and I had done so much self-development and been through 10 years of therapy. Yeah, there was still those times where I did it like every couple of months, I just allow myself to do it.

Anne:

It was still sort of there. So, becoming pregnant, yeah, it was sort of sad for me to make that full change, but it took growing another life for me to, yeah, realize how important mine was.

Sam:

So what do you wish you could tell your younger self? And I guess now, your kids? Knowing what you know now.

Anne:

It sounds cliche, but just that you’re beautiful, inside and out. And the world is at your feet. I think that’s the biggest thing. I don’t grieve the time lost anymore because I’ve accepted it as this is my whole person and this is who I am. But it is a lot of time spent with things now that I realized didn’t really matter. And if I had of just accepted and loved my whole self, then yeah, I don’t know what I would have done. I think I would have done a lot more in that time. I feel like I did waste a lot of time worrying about things that really didn’t matter. So there is some sadness around that. And I guess that’s why now I live my life to the absolute fullest.

Sam:

Like all of the guests in this episode, Anne really doesn’t want to pass her issues on her kids and see them make the same mistakes that she did.

Sam:

It’s difficult to talk about how we can protect our kids against the problems that we developed without acknowledging that there’s one massive game changer. And that is social media. Well, we used to be able to turn off the TV or just close the magazine. Nowadays, these messages that kids are bombarded with are so hard to escape.

Nicki:

It’s a very image focused environment. And people are often looking for compliments and compliment based on their appearance. If people can focus on their body functionality, rather than on the aesthetics, it can make a big difference. They can really appreciate their bodies for what their bodies can do rather than how they look. And when it’s a forum such as social media, we’re seeking compliments, but people are actually opening themselves up to criticism as well. And we know that body bullying is a real risk factor for the development of negative body image.

Nicki:

And we also know that a lot of people with eating disorders will report that being body bullied was a catalyst for the development of an eating disorder. We know that from the people who we’ve discussed lived experiences with, and we know that from research. So it’s very important to discourage young people from being negative about another person’s appearance, because that kind of bullying or teasing can have a really lasting impact on young people.

Sam:

It’s nice to think that we have some sort of control over how our kids end up feeling about their bodies and whether or not they end up developing the problems that we did. But as we’re hearing, so much of this is out of our hands. So, let’s go back to our lived experience guests and see how they’re trying to negotiate this minefield with their kids.

Kelly:

My eldest daughter is a dancer. And we talk about the fitness industry being body conscious, so is that particular industry as well. So, I’m very, very mindful about some of the messages that she sees and hears and things as well. If there’s any, any sniff whatsoever of any type of discussion or messaging, we talk about it very, very heavily.

Kelly:

Now on saying that, unfortunately, she’s had to see her dad go through it. And that is killer. No child should ever go through this, by the way, for one thing. No person should ever go through this, but no child should ever see their parent go through this and go through the anguish and the mental and the physical aspects of an eating disorder.

Sam:

Nobody wants to follow their parents’ mistakes. Do you think that is something that’s strengthened her in the end?

Kelly:

A hundred percent, a hundred percent. Oh man, I’ll go more than a hundred percent. So the point where she navigates her friend’s discussions and talks to her friends and talks to her school and does research papers through high school. For the last few years, every research paper, every drama thing, every dance that she can do and put some sort of interpretation on, it’s all about eating disorders, it’s all about body image. It’s all about those types of relationships.

Anne:

I’m deeply passionate about accepting my children for their whole self and encouraging them to be completely, uniquely who they are. I believe that without that expression, that full expression of self, that’s when these problems start to begin to rise. And maybe, yeah, I really struggled with identity with who I was as a person, probably because of the cultural factors and religion and time and place of life and school. And it’s hard to find yourself in a system. So, I’m very, very passionate about allowing my children to live their life for them and giving them as many opportunities as I can to explore whatever interests they might have. And as soon as they show that they’re not interested in something, I just roll with the flow of them in their life. Yeah, what we don’t express, we repress. And that’s what I did for so long.

Nyibeny:

With two of my nieces, they’re only 14 days apart. And since they were little, they kind of set off on this path of this one is reaching this milestone at this stage, and this one is that. But as they’ve hit the nine-year-old stage now, their bodies are very different to each other. And you can see how that sort of coming into play with their interactions with each other. And my goal, and same with my sister’s, is to not let them buy into that competitive notion of my body’s bigger or my body’s better or this, but just to sort of say, “Look, my body is my body and it functions as it needs to.” And to move them away from that mindset of that inherently existing as a girl or a woman is about competing on simply your body. That you can learn to value what you can offer society as a whole person.

Nyibeny:

And it’s very difficult because having this conversation with you as an adult, obviously, it’s easier to articulate this in abstract terms, but with younger kids, you have to be able to give consistent messages in a digestible fashion. And one that doesn’t obscure what the issue is. So when one of my nieces told me that she didn’t like me calling the other one skinny because in her mind, ergo, it meant she was fat, I had to sit down and think, “Okay, how do we navigate this language?” We can’t just remove these words, but we need to remove the sting of these words. Why does she think skinnier means better? Why does she think that by implication she’s fat, if we call somebody else skinny?

Nyibeny:

So we sat down and we talked about descriptive words. We said, words are used for conveying message. And once we had this discussion about language as something that you use to convey messages and to connect with people, the one who felt hurt by this word skinny, was able to kind of take some of that sting out of it. And I think it really is just about communicating at the level that children can understand, but also taking into account their feelings and the messages that they’re absorbing from society. And making sure you’re checking in with them constantly, just to know, especially in the pivotal period of time, where they are growing, that they’re going to see messages that sometimes do make them feel bad, but to give them the space to talk about this and not to dismiss them.

Sam:

Kids are great imitators. And whether you like it or not, parents, teachers, and other adults who are in their life play an important role in helping to prevent eating disorders and to promote body image acceptance in young people. And Danni Rowlands spends a whole lot of time in schools for her prevention services work, but she stresses that prevention takes a whole of community approach.

Danni:

We have worked for parents because, of course, what happens in the home is really important and can support young people. But also the home environment is where parents might start to see if there’s something that’s developing that is of concern. And so we do have that early intervention component as well. And then of course we work with professionals. So whether that’s educators, teachers, coaches, youth workers, school nurses, and wellbeing teams, basically so that we can inform them on what body image is and isn’t, and where it is concerning and what they can do if they are worried about a young person.

Danni:

But in all of those sessions, one of the things that we really try to do is empower our audiences to role model. Role model positive behaviors, positive language, because obviously when people can see it as we’d like it to be, it’s much easier to adopt and take on board.

Sam:

And another really important factor, according to our experts, is encouraging parents to help children know when to look for help and then where to go when they need it.

Nicki:

What we encourage is stigma reduction and encouragement of health seeking. So, we really want people to talk about it because a lot of people are in the same situation, but because they’re not talking about it, because there are barriers to seeking treatment, seeking help, people don’t realize. And the more we can talk about it, and the more we can encourage people to seek help, the better their prognosis can be.

Sam:

To find out more about Butterfly’s prevention programs, go to butterfly.org.au. You’ll also be able to find out about support groups and support programs that are available in your area. And the website also has a whole lot of body image and prevention resources.

Sam:

If you or someone you know needs help right now, they can call the Butterfly National Helpline on 1800-ED-Hope. It’s 1800 334 673. And if you prefer to chat online, you can do that at butterfly.org.au as well, or email support@butterfly.org.au.

Sam:

And before we go, I want to thank you for being part of our loyal audience. It really means a lot to us that so many people keep jumping in and joining our audience. And we love hearing your feedback. If you’ve got anything that you’d like to tell us, or if you want to suggest a topic that you’d like us to cover, drop a line to Butterfly’s amazing communications team, you can get them at C-O-M-M-S, that’s comms@butterfly.org.au.

Sam:

The Butterfly podcast, is an Ikin Media Production for the Butterfly Foundation. It’s written, produced, edited, and hosted by me, Sam Ikin, with the assistance of Camilla Becket and Kate Mulray. The theme music is from Cody Martin with additional music from Breakmaster Cylinder.

Sam:

And a massive thank you to all of our guests, Nicki Isaacs, Danni Rowlands, Nyibeny Naam, Kelly Griffin and Anne Smith. If you know someone who you think could benefit from this podcast, please share it with them. You’ll find it wherever you get podcasts.

Garigarra Mundine

Yeah, I definitely felt there were elements of racism that definitely contributed to my eating disorders. People would make offside comments about being Aboriginal that just the way that I look.

Jed Fraser:

What underpins everything is, is the colonization and racism that has led to a lot of Aboriginal, Torres Strait Islander health issues and outcomes.

Felicia Foxx:

I am this tall, slim straight up and down figure. And I always used to feel out of place because I am this little skinny, size eight or size six person. Looking back at my ancestors and seeing the way that they were built back then, pre-colonization, it made me proud that I still look like my ancestors. I still have the same figure.

Liz Dale:

It all stems to our culture. One of our greatest strengths is our culture. The culture is diverse, it is beautiful, and it is rich. And it is the place where we draw our identity from.

Sam Ikin:

This is the butterfly podcast from your friends at Butterfly, Australia’s national voice for body image issues and eating disorders. I’m Sam Ikin.

Sam Ikin:

In this episode, we’re exploring how these mental health conditions affect Australia’s Aboriginal and Torres Strait Islander communities.

Liz Dale:

Barraba Yitirr Liz, Dhanbaan Worimi Golbaan. My name is Liz, and I’m a proud Worimi woman. I am a psychologist who’s undertaking the clinical endorsement programme. And I have just submitted a PhD. So hopefully soon to be doctor.

Sam Ikin:

As we’ve discussed on the show before, the stereotypical person with an eating disorder is a young, wealthy white woman. But we know how dangerous stereotypes can be. As certain to be Dr. Elizabeth Dale tells us, anyone from any mob can have eating or body image concerns. It’s not just white Australians.

Liz Dale:

It’s only just been in the last year, thanks to new research coming out of the Western Sydney University. Which I was fortunate to be part of that research, that we now have insight into the prevalence rates. And surprisingly, it has shown that our communities experience eating disorders and body image or dissatisfaction concerns at similar and or higher rates as the mainstream population.

Sam Ikin:

And research from Butterfly and many, many other sources tells us that body image concerns can often lead to eating disorders.

Garigarra Mundine

My name’s Garrigurra Mundine. And I am a Bundjulung, Wiradjuri, Kamilaroi and Yuin woman, originally from Dubbo, New South Wales. Currently living in Canberra, ACT. I’m a public servant come down here for uni. I was raised in Dubbo, New South Wales in my early years up until I was about 11, almost 12. I was very lucky to grow up on my grandfather’s traditional Country. So, I am traditionally from Dubbo, with my family grew up there and I was very close to my relatives there. My cousins were pretty much my brothers and sisters; I’m the youngest of seven. So, we always had a full house and it was just a really great time and place to grow up. I was a very active kid. We all were, I played every single sport there was, so health was never at the forefront of our mind. Well, actually we were quite poor. So, I think for us, it was more just about getting food on the table and into our bellies than nutrition or, weight management or anything like that.

Sam Ikin:

For Garra, moving away from her home in either the big city was a huge change. And the transition from country to city life came with some challenges.

Garigarra Mundine

It was definitely when we moved off country, we had to move to Sydney because my parents got jobs there. And I was the youngest one. I went into high school by myself to an all-girls Catholic School, which was a huge shift for me from a public school in Dubbo. And even though I had a very multicultural group of friends, I was the only Aboriginal one.

Garigarra Mundine

There were very few Aboriginal girls at the school and I really noticed a difference in my makeup, my body, makeup to everybody else’s particularly when, I just hit puberty and my body really started to change. And I noticed that my friends could just eat all of these kinds of food and it didn’t make a difference to them. They were still really naturally small, whereas I was just made to be bigger and curvier.

Sam Ikin:

An eating disorder is not a lifestyle choice and it’s not a diet gone wrong. In fact, for many of us, it’s a really complex mental condition.

Liz Dale:

Aboriginal mental health concerns are quite complex, and that stems from the intergenerational trauma, and the socio-economic political and linguistic disadvantages that stem from colonisation. So colonisation continues to have an impact in our health and wellbeing, and that feeds into systems of care, and it creates a range of access, and engagement barriers for us to access appropriate treatment, and care in the ways that mainstream populations are able to.

Garigarra Mundine

It’s definitely a big element being away from country. Particularly with my second time I had an eating disorder later in life in at university. My mother had been diagnosed with cancer twice and I’d lost my little sister. All of that and being off Country, living in Canberra, I just felt really alone and disconnected. And I had nothing to connect me back to culture and keep me grounded. And I found that I was turning to food to bring me happiness.

Garigarra Mundine

Dealing with those issues as well. I had a lot of anxiety and definitely depression. It was undiagnosed, but yeah, I attempted to get it diagnosed, but unfortunately, I did not have a very supportive doctor.

Sam Ikin:

When you reached out for that support. It wasn’t there.

Garigarra Mundine

No, it wasn’t. And, I’d gone to the Aboriginal health services looking for, culturally supportive help. But unfortunately, I got a doctor that was non-Indigenous, and she didn’t quite grasp the importance of the situation and what I was trying to tell her.

Liz Dale:

There are a range of barriers for Aboriginal and Torres Strait Islander peoples to access mental health care services generally. So these can relate to things like unavailability of services or a lack of services in rural and remote regions. The majority of services being provided by mainstream service providers lack cultural competency and cultural sensitivity.

Jed Fraser:

My name’s Jed Fraser. I’m a proud Bidjira and Mandandanji man. I have a family connection to South West Queensland. So I am a Ph.D. candidate with UQ and CSIRO. And my topic is looking at indigenous youth health assessment.

Jed Fraser:

Let’s take a step back and have a look at the history of eating for Aboriginal Torres Strait Islander people. So prior to colonisation, Aboriginal Torres Strait Islander people ate seasonally. They lived off the land, they ate healthily, they moved, they hunted for their food and had a very healthy diet. And then from colonisation, particularl, historical policies, and how the social determinants of health play into this, and particularly the social economic status of a lot of communities. For example, to get a healthy piece of cos lettuce, you might be paying $10 a head in a remote community. Where in the city, it might be a dollar or two. And when it comes in to the community, it’s been sitting on a truck for a week.

Sam Ikin:

But deep seated and historical cultural issues, are not the only barriers preventing everybody from getting the care that they need.

Liz Dale:

Other barriers can be cost per treatment, cost for ongoing treatment—so we know that eating disorders require often long-term treatment commitment, which ongoing costs can be an issue for our communities who are already economically disadvantaged.

Felicia Foxx:

My name is Felicia Foxx. I am an Aboriginal entertainer and activist. I’m quite prominent in the drag queen community here in Sydney. And yes, I’ve been performing for about four and a half years. And I’ve been working closely with the Butterfly Foundation since 2018. I’m very proud to be here talking to you.

Felicia Foxx:

I grew up out in Campbelltown and being a first nation person growing up, being connected to culture is very important. It’s a part of who you are and that identity, otherwise you’d just be another statistic to the government or whatever else. But knowing about culture and knowing things about my past and my ancestors have helped me, really come to terms with who I am as a person and who I’m meant to be and where I’m going.

Felicia Foxx:

You know, a lot of our elders and a lot of people in our communities don’t see these issues as affecting our mob because our mob haven’t really spoken out about this. So I guess just now I think it’s coming out a lot more nowadays. And a lot of more Aboriginal communities are speaking out on body image issues and, diets and stuff like that. Our life expectancy, an male Aboriginal my life expectancy is the lowest in the world. And I’m hearing that from my Aunty, it sparked an interest in me to go deeper with finding out ways that our bodies are supposed to live, and he way that our bodies are supposed to move on, being first nations people. But, the genocide under the oppression that was colonialism meant the breakdown systems of our bodies, and the breakdown of our diets all happened as well.

Liz Dale:

The limited research evidence also means that there are a lack of culturally appropriate, culturally validated screening and assessment instruments. Aboriginal people in Torres Strait Islanders accessing health care are not necessarily being screened for or assessed for eating disorders. Because with the limited research, it’s not being highlighted as a potential issue. Particularly in people who may not appear as typical eating disordered, i.e., they look undernourished or underweight. The current approaches to treatment are very westernised, and they don’t include culture or Aboriginal and Torres Strait Islander people’s holistic perceptions of health and wellbeing.

Jed Fraser:

And you’ve got things like social media that play a factor. It’s really easy for me to go on to Instagram or other social media and look at these people with their perfect bodies, and all this unrealistic expectations of what, particularly, young people should look like. So there’s a societal sort of conversation needs to happen around body image, and eating disorders and really shift the paradigm using culture as a fundamental principle. That should underpin everything that we do in this space. Particularly as I mentioned, going back to pre-colonization, and how we ate and what we did. It’s really complex all these things that come into play in terms of this.

Felicia Foxx:

When I really got to looking at my statuesque figure, I am this tall, slim, straight up and down figure. And I always used to look at the males in my family that I’m around now. They’re all athletic, very proactive football players and basketball players. So they’re very big and built and muscly, and I always used to feel out of place because I am this little, skinny, thin, size eight or size six person. So I guess just looking back at my ancestors and seeing the way that they were built back then, pre-colonisation, they were running around, hunting animals and eating from the land, and getting the proper nourishment that our bodies were supposed to be getting, and are supposed to be getting. That really made me come to terms with my body. And it really made me start loving my figure and the way I’m made and built.

Sam Ikin:

Is that because they looked like you.

Felicia Foxx:

Yes, It made me proud that I still look like my ancestors. I still have the same figure, I guess. And I always saw things in social media or saw things on platforms for bigger people, when it came to bigger people being embracive of their appearance. And I never really saw issues of skinny people struggling with the way they looked or speaking out on the way that they felt.

Liz Dale:

It all stems to our culture. One of our greatest strengths is our culture and across Australia, culture is diverse, it is beautiful, and it is rich. And it is the place where we draw our identity from which is so important when we’re talking about all the eating disorders. It’s the anchor upon which we connect to each other. We connect to Country, we have a language to express ourselves and to articulate our needs and to share our strengths and to be creative. It is the source of our health and wellbeing.

Garigarra Mundine

In the past few years, I started really getting into traditional weaving. I reconnected with my aunties back home and they’ve been teaching me all the different traditional weaving styles. And having that here with me in Canberra really connects me back home. And so to have that almost piece of culture in my hand has made such a huge difference because whenever I’m feeling anxious or a little bit sad or I can feel myself starting to get into some bad habits, I pick that back up and I can feel my culture and my connection to it. It just puts me in a safe space.

Sam Ikin:

Everyone we spoke to in this episode said a cultural connection was important for their mental health, but not everyone, initially at least, had a direct connection to their traditional culture.

AJ Williams-Tchen:

I’m an Aboriginal man. I grew up not so much connected to culture because I was fostered out and then later adopted. My backgrounds where Wiradjuri and Wotjobulak, so my family come from Dimboola Horsham in Victoria and Dubbo, Wellington area in new South Wales.

Sam Ikin:

This is AJ Williams-Tchen, He works as a cultural mentor and a master mental health first aid instructor.

AJ Williams-Tchen:

Nothing was really talked about within my family. Nothing was taught at school about eating disorders. All I kind of knew was the typical kind of eating disorder like anorexia, because most times people think they can notice it, but nothing was actually talked about. And I think that’s why it was never picked up early.

AJ Williams-Tchen:

I love dancing, I actually did dancing for a number of years. And so I was always sort of body conscious to start off with, but I also was at a school where there was lots of bullying. I seem to be a brunt of a lot of the bullying that was going on. The fact that I did dancing, the fact that I was an Aboriginal kid, the fact that I had grown up in foster care and then adopted. So there was a lot of things that people wanted to pick on me about. And I didn’t know actually how to cope with all the bullying that was actually going on.

AJ Williams-Tchen:

People knew that there was something wrong. Because I was passing out a lot, the interesting thing in all of this is that I remained the same white throughout the whole process. I would spend about once a week or once a fortnight, just passing out on the way to school, on the bus, I already had enough attention from kids. They weren’t passing out. But again, everyone was responding to it as some sort of medical issue. So I kind of had ECGs and MRIs to try to work out what was actually happening. But I started to understand it myself, that this was something that I could no longer control.

AJ Williams-Tchen:

I was in year 10 at school. And I was in science, sitting on those stools, in the science lab. And I kind of looked down from the stool and all of a sudden, the whole room kind of spun. And I fell and I passed out in the science lab. They called an ambulance because they weren’t able to wake me up. And then I have memories of being in the ambulance. And I realized that one of my teachers were in the ambulance with me. And she kind of mentioned to the paramedics that I do think AJ might actually have an eating disorder.

Sam Ikin:

The experience of an eating disorder can be very different for different people and they present differently, which is why some people go undiagnosed for so long. But regardless of how it presents body image issues and eating disorders can weaken not just body, but mind and spirit as well.

AJ Williams-Tchen:

How could I have an eating disorder when I wasn’t eating?

AJ Williams-Tchen:

I don’t remember much more of the trip, but what it must’ve done is triggered the paramedics to actually pass that information onto the hospital staff. Because for the first time when I was at the hospital, the conversations changed. They were talking to me about my stress levels, they are talking a bit about what are some things that are actually happening in my family. What are some things that are actually happening within the school? I was kind of reluctant initially to talk about any of the issues, but then slowly, I kind of realized that they are actually treating me a lot differently. I don’t actually have an IV in my arm and I don’t actually have to have all these tests and they weren’t taking my blood for the first time. I think they started seeing what was actually happening to me. It’s not a physical thing, but more of a mental health related issue. And this is where I could start to then get some help.

Sam Ikin:

AJ was lucky enough to find the right treatment eventually, but for people who live in rural and remote areas, finding the right treatment can be very difficult.

Jed Fraser:

Some of these communities, they don’t have any economic stability that have, there’s very little employment and there’s very little access to health services. However, there’s the other side of things as well, where people don’t want to go from the lands and lose that connection to Country. So this whole interesting dynamic comes into play, but there needs to be more done in terms of what’s historically happened in Australia. And in terms of the contemporary issues, some of our rural and remote communities have third world conditions, and obviously that’s going to affect health outcomes. I know there’s a lot of different organisations and policies and strategies going on around the moment. There’s obviously the Close the Gap reform, that has all these new indicators, particularly around some of the social determinants of health. But what underpins everything is colonisation and racism that has led to a lot of Aboriginal Torres Strait Islander health issues and outcomes.

Liz Dale:

We are missing a positive presence where we’re underrepresented, we’re often negatively portrayed. And when images of Aboriginal and Torres Strait Islander peoples are used in the media, it’s often stereotypical. By that I mean, dark skin, dark eyes, darker hair, which for fair skinned, Indigenous people, fair-skinned Aboriginal and Torres Strait Islander peoples, can perpetuate body image concerns by feeling as though they don’t look like the typical traditional Aboriginal person.

Garigarra Mundine

I’ve definitely learned over these years that, it’s a topic that you really need to talk about. You can try and be as strong as you want, but it’s just going to eat away at you on the inside, and it’s going to come out in one way or another, physically or mentally. You’ve really got to talk about it and get it out there because you’re never going to get better until you start to talk about it. And you also need to build strong support systems around you.

AJ Williams-Tchen:

It’s only in the last 15 years that it’s kind of been recognised that actually males actually do have eating disorders as well. Even after my experiences, it was still a number of years before the society kind of recognized do males actually having disorders. Other barriers included that I don’t think my family had a really good understanding of what was actually happening as well.

Sam Ikin:

Yeah.

AJ Williams-Tchen:

I think their major response was, well, if you just ate, there wouldn’t be a problem. Or if you just stopped vomiting, there wouldn’t be a problem. So that was more of just stop doing this. I wish I actually had a male to talk to that actually had an eating disorder in the past. Even in the hospital, in therapy, all my peers at the time were all female. All the nurses that I worked with were mainly female as well.

AJ Williams-Tchen:

Everyone kept saying to me, this is very unusual. I’ve never worked with many males before. And even those comments were kind of telling me that I’m not normal. And I don’t think they realized that at the time. They were telling me that I was not normal because statistically, more women were diagnosed with eating disorders at the time. All the literature was around females. I just wanted someone to actually go for what you’re experiencing, this is quite normal for an eating disorder. But I was always told that I was not normal and my behaviours weren’t normal. It became a huge barrier as well for me actually seeking help because I didn’t know what was normal.

Sam Ikin:

One of the most basic things that we keep saying all the time, is that talking helps. Reaching out to talk about it with friends, family, mob, or the Butterfly Helpline can help. Butterfly service is free and confidential. And the counselors have ongoing cultural safety training.

Liz Dale:

Don’t tackle it alone. There’s no shame in talking about it and for community and for service providers, let’s tackle these issues together. Let’s come together and draw from our culture so that we can obtain a better understanding of body image issues and eating disorders within our communities and how they’re affecting our communities. Let us also work collaboratively with mainstream services so that we can test if their knowledge about body image and eating disorders is helpful for us or not. And we can share with them our approaches to recovery so that we can build an inclusive and complimentary evidence-base that’s going to really provide support for anybody experiencing an eating disorder, because we know that eating disorders don’t discriminate against race, culture, gender, they affect us all. Let’s unite to tackle the challenges together.

Jed Fraser:

I think it’s great that this conversation’s happening. And if there’s any Aboriginal or any Aboriginal Torres Strait Islander people, or anyone in general that struggling with body image, or eating disorders reach out and to the Butterfly Foundation, or your local Aboriginal Community Controlled Health organization to get help. Because, all of the time, other people will be on that journey. Yeah, you’re not alone. And I think it’s, moving away from that shame and stigma around this sort of thing, and having these conversations is a really, really important piece of the puzzle.

Sam Ikin:

If you’re having body image concerns or you’re struggling with food and you need some support, Butterfly is there to help. Firstly, there’s the National Helpline with free, confidential, and culturally safe information and support for anyone struggling with body image or eating disorders, as well as anyone who cares for them. The Butterfly Helpline also provides information, resources and referrals to health professionals. The phone number is 1800 33 4673. You can remember that quite easily. It’s 1800 ED HOPE. Butterfly also encourages you to check out their Every BODY is Deadly campaign on the website, butterfly.org.au. And if you don’t like talking on the phone, you can use web chat or email. The new chat bot KIT is available online 24/7. The Butterfly podcast is an Ikin Media production for Butterfly Foundation.

Sam Ikin:

I’m Sam Ikin. I host, write and produce it with the assistance of Camilla Becket and the Butterfly team. Music is from Cody Martin with additional music from Breakmaster Cylinder. And we’d like to thank our guests soon to be Dr. Elizabeth Dale, Jed Fraser, Garigarra Mundine, Felicia Foxx, and AJ Williams-Tchen. If you’d like to support the Butterfly podcast, the best thing you can do is to share it with someone you think is going to get some value from it. They’ll find it wherever they listen to podcasts.

Nikki Jeacocke:

… and they do superhuman things, but athletes are human beings, and that’s really important that we remember that.

Jessica Smith:

It was agonizingly painful to get to a point in my life where I realized that in order to continue living, I had to give up the one thing that meant so much to me, and that was swimming.

Fiona Sutherland:

Prevention and early intervention in sport is the biggest step that we really have to take.

Maddie Garrick:

I couldn’t do the things that I was able to do. I was working harder, and I was training more, and I couldn’t understand why I wasn’t getting better.

Ben Sanders:

And I was like, “This isn’t healthy. This isn’t putting me in a good position to succeed.”

Sam Ikin:

Everyone knows how important sport is to Australian culture. We’re a sports-mad country, and that’ll never change. In the UK, they’ve got the Royal family. In the United States, movie stars play the part of royalty, and you could argue that Australian royalty are our top-level athletes.

Jessica Smith:

The demand and the pressure on athletes to look a certain way or to be a certain weight or shape. I think we need to really educate ourselves about that a lot more.

Sam Ikin:

For Australian athletes, it’s a high-pressure situation where their bodies are being pushed to go faster, higher, and stronger. It’s a situation that can make them particularly vulnerable to disordered eating, and in turn, eating disorders. This is the Butterfly Podcast from your friends at Butterfly. Your national voice for eating disorders and body image issues. I’m Sam Ikin.

Nikki Jeacocke:

Athletes are human beings, and so humans have risk factors for developing eating disorders. So our athletes are the same. There are then sports-specific risk factors that can exist on top of what the general population might be experiencing as a risk factor. My name is Nikki Jeacock, I’m a senior sports dietitian and disordered eating project lead at the Australian Institute of Sport. Eating disorders occur in the Australian population, and sport is a microcosm of our society. So yes, we see eating disorders in athletes. Prevalence data will often show that there is a higher incidence in athletes than general population match controls. And in saying that, disordered eating and eating disorders can occur in any athlete in any sport at any time.

Sam Ikin:

The psychological traits that are associated with eating disorders. And we’ve spoken about them a lot on this show. Things like perfectionism, self-disciplined, self-motivation, and high achievement. The thing is, all of those traits are commonly found in people who succeed in sports.

Jessica Smith:

Making the team was obviously the highlight of my career. I was so, so excited. Everything that I had worked for had become a reality. And I remember telling myself, “If I make the team, then I don’t have to starve myself anymore. I don’t have to go into that binge-purge cycle.” But of course, as anyone in this same experience will know that the goalposts then just moved. And I said to myself, “Well, now that I am an elite athlete, I have to make sure I look like an elite athlete. I have to make sure that I am even more stringent, even more demanding when it comes to what I was eating and how I was exercising.”

Sam Ikin:

This is Jessica Smith. She’s a former Australian Olympic swimmer who represented her country for seven years.

Jessica Smith:

Unfortunately, I was forced into early retirement due to a struggle with eating disorders.

Fiona Sutherland:

Often things move much more slowly than we would wish. And certainly, in the sporting space, what tends to happen is that athletes then become coaches and other support staff. And so the culture and the beliefs and attitudes can become quite deeply embedded within a certain club or an organization.

Sam Ikin:

This is Fiona Sutherland from the Mindful Dietitian.

Fiona Sutherland:

I am director of the nutrition program at the Australian Ballet School.

Sam Ikin:

Fiona Sutherland works mostly with high-end dancers who were technically artists rather than athletes. At least that’s what they’ll tell you.

Fiona Sutherland:

So that is a name that some dancers don’t like. They would prefer to be called artists or dancers as opposed to athletes. From a sports science perspective and from a nutrition perspective, I suppose it could be said that I see them very much as athletes.

Sam Ikin:

Fiona says the research that she’s seen tells us that the blanket statement that athletes are more at risk of eating disorders isn’t necessarily true. However, there are certain types of sport that do pose a higher risk.

Fiona Sutherland:

Although it is kind of a [inaudible 00:05:13] belief that athletes are more at risk of eating disorders, it’s actually not born out in the research. Although it could be said that particular sports, so for example, weight [inaudible 00:05:23] sports or aesthetic sports, it seems as though the literature is revealing that those kind of sports are, or do put an athlete more at risk of engaging in disordered eating, which may become more of a [inaudible 00:05:40] disorder.

Sam Ikin:

Research from the National Eating Disorder Collaboration or the NEDC tells us that athletes who believe their performance is directly affected by their body type often experience body dissatisfaction. And that can lead to disordered eating, which in turn can lead to eating disorders. Athletes like bodybuilders, wrestlers boxes, jockeys, and rowers, aesthetic sports, which focus on appearance, figure skating, dancing, diving, and gymnastics, for example, and endurance sports, which focus on individual performance rather than the entire team sports like track and field cycling and swimming at particularly at.

Fiona Sutherland:

So I think one thing that’s really important for parents and families and athletes and active people to know is that it’s not necessarily the sport itself, but it’s sometimes the way that the cultures are set up and the expectations around weight, shape, and size. So it’s rather than blaming the sport or blaming coaches or individuals. It’s about us taking the time to examine what are the pervasive beliefs that exist within particular sporting cultures, which lead people to engage in behaviors, which might be unsafe for them.

Sam Ikin:

For athletes, body weight and size are more likely to be blamed and criticized for poor performance, both by trainers and the athletes themselves. In reality, however, disordered eating and eating disorders are more likely to negatively impact performance. And that’s a story that played out in real life with devastating impact for Australian Paralympian Jessica Smith.

Jessica Smith:

I was actually born missing my left arm, and to this day, doctors have no explanation as to why that occurred. And so I think for me growing up, I was really grappling with my identity and my place in the world. I was told by everyone around me, by doctors and professionals that I was different, that I had a disability. And a lot of the labels that were being used to describe me have so many negative connotations. And for a young child, I remember feeling as though I didn’t want to be limited by what other people were saying or by the way that my body looked. And so, for me, I realized I had an opportunity to show people and to prove to myself that my body could do amazing things. And so the natural progression for me was obviously to go into sport. It’s something that I fell in love with. I really enjoyed being in the water.

Jessica Smith:

I had this sense of freedom and power, even from a very young age. And I think there was obviously a bit of natural talent there, which helps build that level of self-confidence. But it was my first swimming race when I was 10, at the school swimming carnival. And it was a 50 meters freestyle, and I won, beating all the girls and boys with two arms. I grew up in country, New South Wales, in Grafton on the far north coast. So there was no other kids in the school [crosstalk 00:08:38]-

Sam Ikin:

Awesome. I love that story.

Jessica Smith:

Yeah. So it sort of in that moment, I remember thinking, “Wow, people are looking at me finally for something that I can do rather than something that I can’t do.” And the elation and the excitement that I felt in that moment only at 10 years old, I remember it so vividly. And I said to my mum and dad, “I need to swim. I want to swim because it makes me feel good.”

Jessica Smith:

Also, I was just a teenage girl growing up in a world where we emphasize so much on beauty and aesthetics and appearance. And so while I was navigating my world in the pool and as a swimmer and achieving great things, I was then also coming to terms with the fact that I was going through puberty, and I was this teenage girl who did look different. And so I wasn’t getting the attention of boys at high school. I remember one guy even saying, “That girl Jess would be pretty if she had two arms.” And so feeling like I just was too different in my space. And so it was really, really hard to then try and combat the negativity that then started to encroach in my internal dialogue. I looked in the mirror and realized that my arm was never going to grow back. And I also have profound scarring on my neck and chest from an accident when I was a toddler.

Jessica Smith:

A lot going on in that childhood years, in teenage years as well. And so for me, I did. I started to diet, and I started to look at ways in which I could lose weight. And unfortunately for me, that was the beginning of basically a decade living in the hellish nightmare of anorexia and bulimia. And like many athletes can relate to what people see on the outside is completely different from what’s going on on the inside and the shame and guilt that accompanies an eating disorder. And that insidious mental illness meant that I didn’t feel that I could speak up and share what was actually going on with anyone around me. So incredibly lonely. I felt the pressure as well, that perhaps because I was already living with a disability, I therefore didn’t have the right to have any other issues to complain about.

Sam Ikin:

So after overcoming so much adversity to make the Australian Paralympic team and get selected to go to Athens in 2004, the eating disorder that she’d been hiding for so long, stole her dream from her.

Jessica Smith:

As Athens got closer and closer, I became sicker and sicker. And I remember landing in Greece and feeling so excited. But just terrified at the same time because it was as if I knew that my body physically and emotionally was under so much pressure.

Jessica Smith:

I was expected to Medal in Athens, but I was the only member of the Australian team who didn’t make a final. And that’s been very, very hard for me to verbalize for almost seven years when I worked as a motivational speaker I didn’t share that with anybody because the guilt and the shame was still far too heavy for me to carry. But I realized that that’s the important part of my story that I do need to share and that I do need to express to help myself heal and to help myself in recovery. And so by explaining to people that my eating disorder had really taken such a hold on my entire life to the point where it had basically destroyed my swimming career to be the only member of the Australian team to not make a final was absolutely, it was just horrendous.

Sam Ikin:

The physical impacts of eating disorders can be staggering, and they can be life-threatening. But the emotional burden that often goes with it can sometimes be just as bad.

Jessica Smith:

I was in a complete state of depression by that point as well. And so, again, what a lot of people don’t understand about eating disorders. It’s not just about the food and the weight loss. It’s everything else that creates this mental just heaviness and fog. It was a combination of all of those things to the point where halfway through the week of competing in Athens, I realized I was like, “I am not going to be able to swim as fast as I need to. My body has had enough.” I remember my hair was falling out. My teeth were breaking. That’s just a physical side of it. But emotionally, I had basically checked out.

Sam Ikin:

Unfortunately, Jessica’s story isn’t isolated, which is why bodies like the NEDC and the Australian Institute of Sport, have been doing so much work towards helping athletes overcome eating disorders or prevent them in the first place. It’s a little bit more complicated, though, because when we’re talking about eating disorders at high-end sport, it needs to be approached a little bit differently. In some cases, weight or body size can affect a high-performing athlete’s performance, especially when a fraction of a second can mean the difference between a gold medal or not even qualifying. But Fiona Sutherland says huge improvements have been made in sporting circles.

Fiona Sutherland:

What we need to really focus on is that eating disorders are so harmful. And any way that we can be in a position where we can prevent them whilst also focusing on optimal performance is, of course, that sweet spot that we want to achieve. Will we ever get there? I’m not sure, but I’m hopeful. So I’ve been a sports’ dietician and an eating disorder [inaudible 00:14:29] dietician for over 20 years now. And honestly, things have changed a lot. And that’s only in half a career time and in a portion of my lifetime.

Fiona Sutherland:

And so I’ve been really at the same time, as I feel like tearing my hair out at times, I also feel very [inaudible 00:14:47] and incredibly hearten by the efforts that are being made on individual levels and also on more organizational [inaudible 00:14:58] levels as well. So what we used to see as totally acceptable, I’ll give you an example, things like doing skinfolds and putting them up publicly for all of the clubs to see and compare and to make comments on and therefore attract body-related, maybe not bullying, but close to that. Certainly disparaging comments or teasing or whatever is culturally acceptable within a sport. And now that is seen as very unacceptable behavior.

Maddie Garrick:

It’s like, okay, well, if I can control the way that I looked or the way that I felt, or the way that I ate, because I thought everything else was out of my control. So it gave me something to focus on and work on. And I became then so obsessed with everything around eating and exercising. But again, I was doing it in the wrong manner.

Sam Ikin:

This is basketballer Maddie Garrick. She’s the co-captain of the Deakin Melbourne Boomers and an Australian three X three basketball player.

Maddie Garrick:

I absolutely hit my rock bottom at 15. I just remember when I think about the whole lived experience itself, I was just so consumed. I explained that as there wasn’t a quiet second in my brain, and I just became… I was depressed. I was angry. I became paranoid about little things. I became so fixated on things that shouldn’t even be an issue. But I just remember I was just tired. I was just so tired of physically, obviously, but mentally I’m tired of just being so consumed by everything. And all my thoughts were negative. I was playing basketball, but because I wasn’t feeling my body. I was losing weight. I couldn’t do the things that I was able to do. And in my mind, I couldn’t understand I was working harder and I was training more, and I couldn’t understand why I wasn’t getting better. Why I kept getting knocked around. Why I couldn’t get to the basket? Why I couldn’t lift as heavy. I was lifting, even I was training more. And so I became really frustrated myself. And that’s where my anger came out as well.

Sam Ikin:

While Maddie Garrick was isolating herself and trying to face her problems alone. Things just went from bad to worse. But as soon as she reached out to people who she knew could help her, it started to turn around.

Maddie Garrick:

I just remember I was sitting watching TV, and I burst into tears. And I remember saying to myself, “I’m so sick and tired of feeling sick and tired all the time. I’m so tired of just constant chatter about this obsession that I had around exercising and food.” And obviously being physically exhausted, I just hit rock bottom. And I remember in that moment, and it was like a switch flicked. And I was like, “I need help.” I remember saying those words to myself, and that was something that I didn’t want to admit earlier on, and I avoided it. But I just hit absolute rock bottom, and that was it. I was embarrassed by it too because I had medical parents. My dad was a pediatrician, my mum’s a nurse. And I remember saying, “I need help,” but I didn’t know how to explain it.

Maddie Garrick:

Because I knew in my mind what I was doing and the habits that I had formed were wrong, but I couldn’t help them. I couldn’t help doing them. And I knew if I said it out loud to friends or family, they would sound so ridiculous. And I think that’s where my embarrassment was. Because I didn’t know how to explain it because no one would understand why I was doing things and how it felt for me. So I remember texting my mom. I can’t remember exactly word for word, but I remember texting her in the sense that, “I need some help. Can you help me?” Pretty much. And then I explained-

Sam Ikin:

Wow.

Maddie Garrick:

… a little bit to her, and then my dad put me on to a great nutritionist. And then within a year, I went up to the AIS on scholarship for basketball, and I was just surrounded by some of the best professionals in sport. I was like, “I just want to do this properly.”

Sam Ikin:

The Australian Institute of Sport has worked with the NEDC to come up with what they call a position statement. It’s focused on prevention and early intervention for eating disorders in all sports and across all codes. And we’ll go into that in a little bit more depth shortly. But first, let’s take a look at how the behaviors of high-performance sports have a profound effect on the entire sporting community, right through to the beginner levels.

Ben Sanders:

Good day. I’m Ben Sanders. Happy to meet you.

Sam Ikin:

Nice to meet you. What do you do with yourself, Ben? How would you describe yourself in terms of vocation?

Ben Sanders:

At the moment, I’m a full-time student studying a bachelor of science at Melbourne University, working part-time in a few different roles.

Sam Ikin:

Like a lot of Australian kids, Ben and his siblings always loved their sports and want it to be just like their favorite athletes.

Ben Sanders:

From childhood, I always had quite a interesting relationship with my body and how both my brother and myself grew up, not sure how a lot of people grow up. We’d go through stages of huge growth spurts. And then we kind of fill out from there and our muscles would develop in time afterwards. So our bodies would change quite dramatically. And that will put us in some pretty weird situations when people around us are growing up quite steadily in a kind of a linear fashion. And it got to a stage where, I think, I was in year three, and I was getting bullied about my weight. And I think that might’ve been a bit of a kicker for it. I got to a point where I didn’t want to go to school, and I’m what, seven, 10-years-old, not wanting to go to school because I’m getting bullied about my weight, and that’s something that’s always changing, and it could be six months later and-

Sam Ikin:

Yeah.

Ben Sanders:

… I look completely different. And going forward from there it got… throughout high school, a lot of it’s centered around sport and what I wanted to put my body through to be able to perform. In my head, what would let me perform the way I wanted to and make the teams that I wanted to?

Sam Ikin:

Yeah.

Ben Sanders:

And it wasn’t necessarily what I wanted either. It was what other people around me wanted, what coaches wanted. What other players were doing and what I wanted to emulate to [crosstalk 00:21:43] push myself to a point where I could perform where I thought I could perform my best.

Sam Ikin:

The study of teenage athletes found that desire in teenagers who want to be leaner so they can perform better at sport is associated with changes in disordered eating. This tells us that frequently these behavioral patterns are learned at a very early age.

Ben Sanders:

If someone has a expectation that I dropped some weight to perform better, it’s not something that I would think about a lot, and [inaudible 00:22:16] wouldn’t be something that would take up my day. But when it would be time to sit down and eat, it was something that kind of ticked over in the back of my mind. It’s like, “I don’t need to eat a lot. I’m actually feeling okay. I won’t eat this much.” On the flip side, if I was expected to bulk up a fair bit, I would consciously put food in my mouth and try and get as much as I could possibly get in. And those things would happen concurrently. And it put me in quite an awkward spot throughout high school.

Sam Ikin:

At what point did you realize that your eating patterns were disordered?

Ben Sanders:

It wasn’t until after high school. And I had quite a difficult relationship with food in my first year of university, where I was eating very, very little following a shoulder reconstruction, a pretty significant shoulder reconstruction. And all I wanted to do was perform my best, and the way that I was approaching food was not allowing me to do that. So I was eating really, really little and trying to perform at the same time. And that wasn’t just on the sporting field is in the classroom as well. And it wasn’t until probably the end of my first year in 2019 that it really kind of hit. And I was like, “This isn’t healthy. This isn’t putting me a good position to succeed both physically and mentally.”

Sam Ikin:

Like Ben, athletes are more likely to present with disordered eating rather than a clinical eating disorder. However, there are health and performance implications, regardless of where an athlete falls along the spectrum, and risks increase when disordered eating worsens into a diagnosable eating disorder.

Fiona Sutherland:

It’s something we need to keep shouting from the rooftop, that any age, any gender, any sport, any time we need to be really looking out for those warning signs and importantly, not waiting for the warning signs, but setting things in place that reduce the risk for your athletes. Because as I often say, there’s no such thing as risk-free but reducing risk and harm is incredibly important.

Sam Ikin:

Eating disorders can be life-threatening. We know that. In fact, they have the highest mortality rate of all mental illnesses. So let’s get back to that AIS position paper. It recommends the doctors in sports should have key clinical competency to identify an athlete who’s unstable and requires removal from a sports, emergency intervention, or even admission to supportive care.

Nikki Jeacocke:

It was really wonderful for us to partner with the National Eating Disorders Collaboration in developing a position statement. So it’s officially called the AIS and NEDC Disordered Eating and High-Performance Sport Position Statement. And so it’s such a literature review and a summary of the literature in terms of disordered eating in athletes, why they might exist, and what the potential implications are. But also some specific guidelines and directions for national sporting organizations and how they can help to address this serious and often misunderstood issue within high-performance sport. So the position statement was launched officially in September 2020. And along with that, we developed a range of resources for sporting organizations and also individuals within sport to help work in this space.

Sam Ikin:

All sporting clubs and organizations are encouraged to create their own guidelines on prevention and early identification of disordered eating. All groups are going to be different and have a broad diversity of needs. But the core principles should always be first, do no harm.

Nikki Jeacocke:

Within the position statement. We encourage all sporting organizations to have their own policy. And the reason for that is that then it can be specific and tailored to suit the organization’s needs and the needs of the athletes within that sport. So one of the resources that we created that sit on the ais.gov.au/disorderedeating website is a policy template. So we’d exist so that other sporting around the country can take the template and tailor it to suit their sporting organization and your athletes within it.

Nikki Jeacocke:

So something that we’re really, really passionate about is that all roll holders in high-performance sport have a part to play. And it doesn’t matter what your role is within high-performance sport. Everyone has a role to play. And so then it’s about educating all of those role holders as to how they can help in this space and giving them the tools and the confidence to know what to do and when to do things and who to go to and who to talk to if they’re concerned about things. But also understanding what their potential role is in this space.

Sam Ikin:

So if you’re part of a sporting organization or a club, and you want to make sure that your group is prepared. The AIS have done a lot of the hard work for you. You just have to jump in and use the resources that they’ve provided.

Nikki Jeacocke:

There’s a range of resources on the website, which is www.ais.gov.au/disorderedeating. This policy template sits up there. There is a document relating to considerations around body composition assessment. There’s education workshop details. And there’s also COVID-19 specific resources that sit up on that website too.

Sam Ikin:

Another good place to start is Butterfly’s website. Along with resources, for anybody who wants to know more about body image issues and eating disorders, they also conduct workshops and have pages specifically for sporting groups. To find out more, go to butterfly.org.au. And if you’re struggling with an eating disorder right now, remember that talking helps. You can reach the Butterfly National Helpline on 1800 ED Hope. That’s 1800-33-4673. Or if you’d prefer to chat online, you can do that at butterfly.org.au or email support at butterfly.org.au. And before we go, I want to thank you for being part of our loyal audience. It means the world to us. And we’d like to hear from you. If you want to send us any feedback, or you’ve got some topics that you’d like us to cover in the future, please drop a line to Butterfly’s amazing communications team.

Sam Ikin:

You can get them at comms that C-O-M-M-S@butterfly.org.au. The Butterfly Podcast is an Ikin Media Production for Butterfly Foundation. It’s written, produced, edited, and hosted by Sam Ikin, with the assistance of Camilla Becket and Belinda Kerslake. Our music is from Cody Martin and Brakemaster Cylinder. And we’d like to send a special shout out and a massive thank you to Fiona Sutherland, Jessica Smith, Nikki Jeacocke, Maddie Garrick, and Ben Sanders for helping us out with this episode. If you know someone who you think could benefit from this podcast, please share it with a friend. You’ll find it wherever your podcasts are.

Patrick Boyle:

I spent all my teenage years, either on a diet or being encouraged to diet. Not being active and sporty, and thin, was a problem.

Shreen:

I went on a diet that led me to an eating disorder, and I nearly lost all those things too—as a result of my eating disorder.

Kate Reid:

It was a real shock to the system, and it led, I’d say pretty quickly, towards depression. The depression eventually ended up leading to my diagnosis of anorexia.

Sam Ikin:

This is the Butterfly Podcast from your friends at Butterfly, your national voice for eating disorders and body image issues. I’m Sam Ikin. In this episode, we’re going to find out the truth about diets. Now, we can’t get around the fact that this is going to be a controversial issue. Diets and dieting are complex and often very personal issues. What works for one person won’t necessarily work for another. When we refer to ‘diets’ in this episode, we’re largely looking at the eating patterns prescribed by the health and fitness industry.

Sam:

We’re certainly not suggesting you ignore the advice of a doctor, for example. Like most kids in Australia, I grew up thinking that diets were just part of a healthy lifestyle. I can’t really think of a time since my early teens when I haven’t been on a diet, about to go on a diet, or having just come off a diet. Which is why it’s so surprising to me when I’m speaking to experts who suggest that dieting is a bad idea, but that’s what more and more dieticians are starting to say.

Shane Jeffrey:

In the eating disorder world, it’s fairly commonly accepted that eating disorders, when you look at risk factors, dieting is definitely right up there. We know that dieting is a significant risk factor.

Fiona Willer:

When you prescribe weight loss to somebody, or when you suggest that weight loss might be a good thing for somebody to strive for, what you’re actually doing is committing them to a path that ends up with them being heavier than they started.

Sam:

For decades, our society has told us that we need to look a certain way, and if we don’t look that way, we have to restrict what we eat and ramp up the exercise. It’s a simple equation. You see calories in versus calories out. If it’s not in deficit, you’re eating too much. We’re told it’s that simple. To get in deficit, you just need to go on a diet.

Sam:

But if it’s so simple, why are obesity statistics continuing to rise, and rise quickly? It’s not like everyone hasn’t heard that message. It’s not a lack of education. It comes down to the simple fact that diets, as we know them, often don’t work. When it comes to eating disorders and body image issues, dieting is more likely to make the problem worse. That can cause life-threatening problems.

Fiona Willer:

Insufficient energy intakes and not eating enough to satisfy your body’s metabolic requirements can trigger eating disorder cognitions in otherwise well people. For some of those people, that will lead them down the rabbit hole of an eating disorder.

Sam:

Research tells us that when we go into a state of starvation, it can change your brain patterns and worsen a negative relationship with food.

Fiona:

My relationship professionally with eating disorders in my field really came about because of my lived experience, of somebody with an eating disorder. I’m Fiona Willer, I’m an advanced, accredited practicing dietician, and I’m also a Fellow of the Higher Education Academy. So, basically I’m a dietician who is an academic now, after years in private practice. I had quite a common experience of training to be a dietician many years ago now, as part of my search to help myself, but I ended up helping myself in a way that I did not expect when I enrolled.

Sam:

Fiona is one of the country’s leading dieticians. She has a long list of qualifications, including a Ph.D. in nutrition and dietetics. She’s a director on the Board of Dieticians, Australia.

Fiona:

When we look at long-term studies and we do weight loss trials in the long term—I’m talking two to five years plus—we then see the reality that actually sending somebody down the path of intentional weight loss, more often than not—and far more often than not—results in them ending up in that two to five-year timeframe being heavier than they were to start with, even when they started that weight loss plan.

Fiona:

When you prescribe weight loss to somebody, or when you suggest that weight loss might be a good thing for somebody to strive for, what you’re actually doing is committing them to a path that ends up with them being heavier than they started. Apart from these statistical outliers, who end up writing books about it.

Sam:

Traditionally, Australian society has been very unforgiving about obesity or being overweight. It’s been one of the few appearance-based traits that’s still fair game for ridicule or shaming anywhere from the playground to the workplace. Size discrimination is still rampant. It tends to be justified because they say being fat is bad for you, and by not accepting it, society’s encouraging affected people to do something about it. Why don’t we have a look at how that’s going for us?

Sam:

Data from the Australian Institute of Health and Welfare tells us that in 2018, 31% or roughly a third of Australian adults were considered obese. In 1995, it was 19% or just under a fifth. We’ve seen about a 34% increase in two decades. Surely that tells us that whatever approach we’re using collectively isn’t helping. Fortunately though, things are beginning to change. Fiona Willer is a strong advocate of the weight-neutral approach. I’ll explain what that is in more detail shortly. She’s not alone.

Shane:

Dieting in any form, from my perspective, is something that should definitely be avoided. My name’s Shane Jeffrey. I’m a dietician based in Brisbane with River Oak Health. We provide a private practice dedicated to the treatment of eating disorders; eating, weight, and body image concerns; and we also do quite a bit of work with disordered eating in athletes as well.

Sam:

Shane also advocates for what we call a weight-neutral approach. By weight-neutral, we’re not ignoring the health advice that being overweight or obese has health risks. If we go back to the data from the Institute of Health and Welfare, more than 8% of disease in Australia is attributable to an increased BMI. A weight-neutral approach doesn’t ignore these facts.

Sam:

It accepts them while also acknowledging that obsessing over weight rather than overall health usually makes the problem worse rather than better. Essentially, it incorporates human nature along with the cold, hard facts. When it comes to eating disorders and body image issues, weight-focused dieting is even more likely to exacerbate problems, and even lead to life-threatening ones.

Shane:

In the eating disorder world, it’s fairly commonly accepted that eating disorders, when you look at risk factors, dieting is definitely right up there. We know that dieting is a significant risk factor. Part of that is because most diets tend to structure food into this idea that there’s good and bad, or there’s healthy and unhealthy.

Shane:

So once a diet gets concocted in whatever form it may be, it usually gets accompanied by a lot of dietary rules that people then need to feel a compulsion to follow in order to follow the diet. Because if they don’t follow the diet, then that introduces a sense of guilt for a lot of people, negative feelings. So, the whole cycle tends to roll around.

Sam:

Does that mean that everybody who goes on a diet is at risk of developing an eating disorder? The short answer is “no”, but that doesn’t tell you the whole story.

Fiona:

There’s a whole heap of genetic factors that are rippling along underneath the surface of humans in terms of eating behavior. They’re not turned on to an eating disorder until there’s insufficient energy intake in the mix.

Sam:

Humans have evolved to deal with insufficient food by changing their behavior. This is why our brains work differently when we’re in starvation mode. For prehistoric humans, it might’ve worked really well, but in the Western world where food is rarely hard to come by, these inherited traits are the root cause of disordered eating patterns.

Fiona:

We’re not a simple calorimeter. A human body is actually quite complicated. People don’t recognize that when you don’t put sufficient energy in, the energy outside of it, the amount of energy that we need to fuel the body, reduces. It’s a very rational thing, the human body, because its whole existence is around surviving, right? If there’s not enough energy coming in, the body will assume that there isn’t enough energy available in the environment to eat.

Fiona:

Whether or not you’ve put yourself on the latest juice cleanse or whether there’s literally not enough food to go around in your family, either way, the body perceives that as a problematic situation. So it reduces the amount of energy it needs to continue to function. There’s risk of eating disorders developing as well, as we’re literally saying, “You need to do these disordered behaviors because we think that your weight’s more important than your mental health.”

Sam:

Yes.

Fiona:

It’s not really right.

Shreen El Masry:

My primary school teacher asked me, “You know, if you had a genie in a bottle, what would you wish for?” I’d wish to be skinny, because I believed as a little girl that being skinny would bring me all the things that I saw in the movies. Like career, friends, travel, a husband. Ironically, I had actually achieved all these things before I went on the diet that led me to an eating disorder, and I nearly lost all those things too as a result of my eating disorder. My name is Shreen El Masry, and I’m a body-inclusive personal trainer and certified intuitive eating counselor.

Sam:

Watching Shreen’s personal training sessions, the first thing you notice is that they’re fun. She’s more focused on personal wellbeing rather than weight loss, and her clients keep coming back because they enjoy themselves and they feel better.

Shreen:

90% of the women I work with, who’ve had really negative experiences with both gyms and personal trainers, either with personal trainers trying to weigh them or measure them, or force dieting on them when they don’t even want to lose weight, or just made them feel really bad about their body, or try to push unsustainable dieting on them.

Shreen:

Gyms are just not very accommodating. You walk into a gym and a lot of the marketing is always just thin, muscly, lean people. There’s no diversity, no body diversity. People want to see real people. They want to see real bodies and they’re intimidated by that environment, and they feel like they can’t go there.

Sam:

One of the unique things that Shreen brings to her work is her lived experience. She knows the importance of understanding, compassionate, professional care, which she says can help people avoid the traps associated with diets and dieting.

Shreen:

I was about 27 years old at the time. My counselor said to me, she said, “Oh, I’m going to section you under the Mental Health Act.” I was like, “Oh, you can’t do that.” she’s like, “Yes, I can.” I didn’t know that was a thing, so that was my turning point. I threw myself into recovery.

Shreen:

I just learned everything that I could about health and wellbeing. That’s where I discovered intuitive eating, and health at every size, and this whole non-diet community. When I got better, I just wanted to help. Help others who’d either been through something similar, or who just struggled a lot with dieting and body image.

Sam:

Quite a few of the people with the lived experience who we’ve spoken to on this podcast have related to my experience of the plate. In my mind, the plate is to the dietician as the stethoscope is to a doctor. The plate is an actual plate, but it’s much smaller than a regular dinner plate.

Sam:

It has lines drawn on it to show you the recommended portion sizes for all the various food groups in the meal that I’m supposed to be eating three times a day. The thing is, it always seems to be less than half the size of a meal that you’d get at a restaurant or a cafe, and it didn’t matter if I was training hard in sport or just working in an office job, I always needed to follow what was on the same-sized plate.

Fiona:

I apologize for my entire profession. I’m very sorry about that.

Sam:

The ideals that were put across was so very out of touch and so very unrealistic.

Fiona:

Yes. The intentions have always been good. I think I need to put that out there. No matter, unfortunately, how accidentally harmful things have ended up being, the intentions of dieticians have always been in the right place. It’s just that we-

Sam:

Yup.

Fiona:

… as a profession, in previous years certainly, have been from a quite narrow demographic of the community, so not really representative of the populations that we serve. That’s changing, which is great. I’m trying to encourage that as well.

Shane:

People often ask us, how much of this food should I be eating? Our first question or my first response back to them is often, “How much would you give another person?” The reason for this is because I think what happens is, a lot of people who diet, they sometimes carry two different frameworks around how eating is structured. So that there might be the eating that’s structured on their own belief systems and their intuitive eating. Then you’ve got eating which is constructed around dieting, which is usually constructed around rules.

Sam:

You’ve probably heard of intuitive eating before. It’s essentially the process of developing a healthy relationship with food. It’s a mindful approach that involves listening to our body, and becoming aware of the cues that it gives you. Unfortunately, for many reasons, intuitive eating isn’t something that comes intuitively. Most of us have to learn and practice before it becomes an instilled habit.

Shane:

One of the reasons we ask people, “What amount of food would you give another person,” is because we’re trying to get them to engage with that value as part of their approach to food. So we might have, I don’t know, say a mother who we’re seeing as a client, who might be feeding carbohydrates to her children on the premise that they need carbohydrates because they fuel the body, and they need them for energy and they’re growing.

Shane:

But she might avoid carbohydrates herself because she feels they’re bad or because she’s trying to lose weight. So, you end up with this dichotomy of belief systems. With that dichotomy, you then can start to open up a discussion around the discrepancies and where those ideas come from, and what approach would be more helpful moving forward in terms of the person’s good relationship or positive relationship with food.

Sam:

One of the things they are up against is this massive industry, which is so deeply ingrained in our society, that intentionally manipulates and trades on our psycho-emotional insecurities.

Patrick Boyle:

I feel like the vast majority of the, air quotes, ‘toxic diet culture’, end air quotes, is just built on shaming people through advertising and through really cooked imagery in the media. It’s just targeting people’s biggest fears and shames, and issues of self-esteem, in order to make money off us all hating ourselves.

Sam:

Patrick Boyle has a long-lived experience with eating disorders. It started, growing up, being taunted as the fat kid at school.

Patrick:

I was always a bigger kid throughout my whole primary school, high school life. Somewhere along the line, probably puberty-ish, it switched gears from seeming like a normal thing to being something to be shamed about, or to feel shame about. Yeah, and basically, I spent all my teenage years… most, if not all… either on a diet or being encouraged to diet and play sports more, despite the fact that sports made me feel bad about myself. I was always being made to feel as though not being active, and sporty, and thin, was a problem.

Sam:

As a young adult, Pat became obsessed with eating and exercise, and was diagnosed with an eating disorder, but it wasn’t until a serious cycling accident that he started to pull himself out of the obsessive cycle.

Patrick:

I got doored and broke my ankle. Just by way of spending a few months in bed and having a really great depressive episode for a year, I put on all this weight. Then had to reckon with this fact of, “Okay, you’ve spent the last 10, well, 15, 20 years, your whole life, you’ve linked yourself with your body. Let’s figure out how to lose the weight in a sustainable way, without it becoming a full-blown eating disorder again.”

Patrick:

The way I perceived my body, and my relationship to food and to fitness, was all totally wrong, and that not everyone feels this way about dieting, and punishing yourself, and food should be something you feel guilty about. That that wasn’t actually normal.

Sam:

Patrick says he’s now more interested in how exercise and food makes him feel, rather than what the scales say or what size of clothes he’s wearing, but is that approach the right one for everyone?

Shane:

There will certainly be health professionals out there who argue that weight loss is a reasonable goal to have, but my thoughts are that if you improve, if you look at the broader picture… and this is certainly our clinical experience, as well as being supported by some of the literature… is that if you support people to have a lifestyle where they’re moving in a way that they are able to sustain and enjoy, and you’ve got them in a place where they’ve got a more positive relationship with food, where they’re consuming food in a way that supports health, then that’s often enough for people. It’s just that people don’t really understand that’s an option for them, because it’s not often spoken about.

Shreen:

Everything that I do is from a place of nourishment and joy, rather than punishment. You move in a way that works for you. We have a lot of fun with movement, and it’s okay to take rest days or not to exercise if you don’t feel like it, and not do any exercise that you don’t like. It’s really about being in tune with your body and moving in a way that feels good to you.

Shreen:

Compared to maybe when you go to a gym or to a class, they might be shouting things at you, things about calories burned and fat blasting, and toning and things like that. None of that language is allowed in… or I would ever use myself. I have a strict “no” policy to talking about food or bodies in my classes as well.

Shane:

If weight is the primary target of intervention, that becomes your main measure. What weight is dependent on, in the broader sense of things, is intake and exercise. That’s the most common equation. The thing is, as people focus on weight, weight will move up and down. Nobody ever loses weight in a linear fashion, really.

Shane:

So, what happens is, as weight moves up and down, their intake and dieting becomes up and down as well. There’s no stability there, there’s no structure. So, the eating pattern can become quite chaotic. We often see that in people who diet, because they change their rating based on what their weight’s doing.

Fiona:

Laid among that is all of this social stuff, about the value of a smaller body related to a larger body size, and people trying to get ahead in their chosen career path. People do have this quite accurate, unfortunately, sense that, “If I look the part,” then I’ll get the job. The looking the part stuff is all societal prejudice. We’ve got a lot of that around appearance in general, and a lot of that around weight appearance.

Sam:

Before we wrap up this episode, I want to bring in one more guest, She was a little bit of a petrol head from a really young age. She got a taste for Formula One watching it with her dad, and eventually decided she wanted to work as an engineer on a Formula One team.

Kate Reid:

My name’s Kate Reid, I’m the founder and co-owner of Lune Croissanterie in Melbourne, Australia.

Sam:

That job title gives away the fact that the Formula One career didn’t work out quite as she hoped.

Kate:

I got there, and the perfect job that I dreamed about, the reality of it was nothing like that. I think I’d planned out my whole life. I wanted to be the first female technical director of a Formula One team. All of a sudden, I discovered that all these things, that I thought would make up the rest of my life, weren’t going to give me the fulfillment and satisfaction that I’d been looking for.

Kate:

It was a real shock to the system and it led, I’d say pretty quickly, towards depression. The depression eventually ended up leading to my diagnosis of anorexia. Rather than being able to control those elements of pushing myself forward with my career, I’ve just subconsciously turned this need for control to other things, which led to the anorexia.

Sam:

After five years of therapy, working towards recovery with a team of professionals, Kate found herself on a very regimented diet, which she obsessed over. But once she found a job that she was actually passionate about, life became more about enjoyment. She was able to ditch the diet and in time, ditch the eating disorder.

Kate:

I’d given up my engineering career. I didn’t want to have a part of it. I was not interested anymore. I was starting to feel my way around this real passion and interest for patisserie, but I wasn’t there yet either. Therefore, I had long days ahead of me where the thing that gave me structure around my day was this very prescriptive diet that my dietician had written for me.

Kate:

Then when I started to progress more with Lune and build this business, and suddenly I had this thing on my hands that I discovered that I loved and I was passionate about, and I was excited and I saw a future for it, and it started to consume those long hours in my day, running my business rather than worrying about following my prescriptive diet.

Kate:

As soon as my day wasn’t structured by the meals that I had to eat, and it was structured by the jobs that I had to do and the recipe testing, and going out and finding new customers, and doing my branding and my accounting, and everything, as soon as my mind was filled with all these other jobs that my business needed to move me on, suddenly my brain didn’t have room to think about this really prescriptive diet.

Sam:

How does Kate’s story fit in with this episode? She’s someone who was able to switch from living a life obsessed with what food she was going to eat and focus more on what makes her feel good. It’s easier said than done, but thanks to people like Shane and Fiona, help is out there.

Fiona:

There are a whole heap of health providers that can support people to transition from a weight-centric mindset to a body-positive mindset, so that if people are interested in accessing that, HAES Australia has a registry that has a whole heap of different types of health providers on there that can support you in this way.

Sam:

That’s HAES spelled H-A-E-S or Health at Any Size. We have a diet industry that’s bombarding us with unhealthy ideals, and it’s backed up by deeply entrenched cultural expectations. At this time of year, a lot of Australians are struggling with the diet that so many of us religiously started as a New Year’s resolution. We also know that most diets have failed by February. It can also be a very difficult time for people in the LGBTIQ-plus community.

Patrick:

Mardi Gras’s coming up soon. That’s a perfect example of the normalization of body shame and toxic diet culture in the gay male part of the community. Even in October of last year, you can hear people starting to talk about their Mardi Gras diets. It’s January now while we’re recording, and people are literally posting this stuff online to their friends about getting cut for Mardi Gras, as in getting your muscles and getting shredded for Mardi Gras. “Can’t eat till Mardi Gras.” The fitness part of my life is about mental health. It’s not punishment. It’s not related to dieting.

Sam:

Yeah.

Patrick:

It’s just a thing that I do to feel good.

Sam:

If you’ve found yourself in a point where you’re struggling with food, and you think you might need a little bit of support, the best place to start is Butterfly. There’s the National Helpline. The phone number is 1800-33-4673. Easy way to remember that, 1800-ED-HOPE. If you don’t like talking on the phone, that’s fine. They get that as well. You can chat online at butterfly.org.au. The new chatbot kit is available online 24/7.

Sam:

While you’re on that website, you can check out all the recovery resources that they have, including some really useful tip sheets. All of these services are 100% free and 100% confidential. The Butterfly Podcast is an Ikin Media Production for Butterfly Foundation. I’m Sam, I host, write, and produce it with the assistance of Camilla Becket and Belinda Kerslake.

Sam:

The theme music is from Cody Martin with additional music from Brakemaster Cylinder. Special thanks to our guests, Shane Jeffrey, Fiona Willer, Shreen El Masry, Patrick Boyle, and Kate Reid. If you’d like to support the Butterfly Podcast, the best thing you can do is share it with someone who you think is going to get value from it. It’s available wherever you get podcasts.

Carolyn Costin:

I believe that you can be recovered from this. I strongly believe that you can actually overcome this.

Siena Armati:

It’s been a long time since I’ve told people I had an eating disorder. I had an eating disorder and I’m recovered.

Sam Ikin:

This is the Butterfly podcast from your friends at Butterfly, Australia’s national voice for eating disorders and body image issues. I’m Sam Ikin. We’ve talked about recovery a lot on this show. The main point that we keep trying to drive home is that recovery is possible. You’ve heard not just me, but experts, clinicians, researchers and survivors, all saying the same thing: Recovery is possible.

Sam:

But, that way of thinking has only come to prominence in the last few years. Before that, eating disorders were treated as a lifelong condition that had to be constantly managed—if they were treated at all. They were almost treated like addictions. That is until a woman in the U.S. took on her own eating disorder and won.

Carolyn:

My name is Carolyn Costin, and I’ve been in the eating disorder field for about 40 years. That’s really weird when I say it; actually, a little bit more than 40 years.

Sam:

She’s known all around the world as a pioneer who transformed the way eating disorders are treated. But, when she realized she had a problem decades ago, the whole concept of eating disorders was mysterious, and really poorly understood.

Carolyn:

I think I was 14, my friends and I all went on a diet and having the perfectionistic tendencies that I did, I just became very controlling around it, and I didn’t want to let it go. You take the temperament, you combine it with the fact that diet culture was strong, especially hitting people my age. Twiggy was out modelling and things like that. It sort of hijacked my brain, because I have the perfect temperament for it—the perfectionistic tendencies. And, nobody knew what was happening. So at first I got all this praise for it until it just got worse and worse. This was before there were journals, none of the eating disorder journals were around. There were a few newspaper articles and things like that, but it was hard to get good information about eating disorders at that time.

Sam:

Carolyn realized that she had a pretty big problem, and it was getting worse. She needed to do something, but there was no specialised treatment back then. So, she started to pave her own way and it turns out, she had an uncanny, almost intuitive understanding of what she needed to do.

Carolyn:

There wasn’t any treatment. There was no such thing as an eating disorder dietician. I tried to go to a couple of therapists, they had never seen anyone with anorexia before, and said some pretty weird things we won’t go into. So, I did a lot of work on myself. I put a lot of that into the practice. And then, there are just so many things that I did that have turned out to be very, well, it sounds like tooting my own horn a lot, but it turns out these were useful, I was doing CBT before I even knew what CBT was. Meaning that, instead of going back and doing psychodynamic psychotherapy, I was asking people, “Write down what you eat, tell me your thoughts about those foods, circle what you are purging,” and just getting into the weeds. That’s what you have to do.

Sam:

So, while lots of medical professionals were still coming to terms with the fact that eating disorders existed in the first place, Carolyn Costin was in the early stages of developing a world changing treatment plan.

Carolyn:

I really was recovered. I mean, I had gained the weight back, and I had mitigated all the different kinds of things like the perfectionism, and done things, add principles and different skills to ease my anxiety. And so, I just started treating people. Over time, I started seeing people or treating people. I didn’t really have an intention to specialise in eating disorders, but I had been a schoolteacher prior to that. And, one day the principal at my high school said, “There’s this girl that has that thing you had.” This was back in about 1978.

Carolyn:

When I worked with her, it was just one of those things that I felt like I was inside her head. I knew all the questions to ask, and I kind of got her on her way. She became recovered, and then someone else referred me somebody, and so I started making a small name for myself in this area. And then ultimately, in some ways, right place, right time. Because, I was recovered, I just treated people as if they could be recovered, and I’ve never really looked back from that stance. Six books later, and running several hospital programs, and opening up the first residential treatment centre in the United States…I’ve kind of been doing a lot in the eating disorder field.

Sam:

By CBT, Carolyn’s referring to cognitive behavioural therapy, which is part of the model of care, which we’ll get to shortly. That treatment centre was called Monte Nido, and the first one opened in Malibu, California. About a dozen others followed all across the United States. And until very recently, Australia hasn’t had anything similar. To give us some insight into what has been available in Australia, we’re going to talk to Siena from Sydney.

Siena Armati:

I’m 23 years old. I study at UTS. I have one more year left of a five-year degree and I work part-time.

Sam:

Siena’s eating disorder first started to get out of hand when she was about 15 years old, and she spent years going in and out of Australia’s hospital system.

Siena:

Each time was completely different. Each time was worse in terms of how severe my eating disorder got, and the tricks I picked up whilst being in a hospital for an eating disorder. So, there was a lot of work for me to do when I got out. And, I still didn’t understand what an eating disorder was. I didn’t really know where to go. All I knew was that I didn’t want to get better, because I just didn’t think I was sick. For someone to tell me, you need to gain weight was like, “What are you speaking about?” “I just went into hospital, I’m done. I’m good, leave me alone.”

Siena:

Yeah, it was pretty much just the waiting game at the end of the day. I’d go into hospital and get a bit better. Not mentally, physically. Go out, come back in. And yeah, it was a pretty vicious cycle for me and for my family. It just got worse every time.

Carolyn:

What I found about the hospital settings, first of all, not every patient needs the 24-hour care in a hospital. Not everybody who needs 24 hour care needs acute medical care. And, I thought there was a big mistake in putting a lot of people who—yes, they needed to be monitored and supervised, and have an external structure and have people around for support—but they weren’t medically compromised, so they didn’t really need to be in a hospital.

Sam:

The need for a specialised treatment centre started to take shape in Carolyn’s mind in the 1980s, rather than focusing more on the symptoms like they do in the hospitals. She wanted to create a place that taught patients how to continue to get better when they left and went back to their homes, and their families, and their jobs and all the factors that were there when the eating disorder started in the first place.

Carolyn:

I needed to have a place where people can go and we teach them real life skills that they need to use when they get out of treatment, otherwise it was a revolving door. And, I honestly have seen that a lot in my visits to Australia. Patients who have come here for treatment with me from Australia, I think my record was a girl in her twenties who had been hospitalized 21 times because of the inability to sustain the gains that she made in a hospital, because there just isn’t an opportunity in a hospital setting to do all those skill-based treatments.

Sam:

At this point in the story, it’s starting to become really clear that Australia needs its own version of Monte Nido. Well, it’s very, nearly got one. It’s based on Queensland’s Sunshine Coast, and it’s called Wandi Nerida. It’s based on 17 years of treatment in Monte Nido centres in the United States. But that name, Wandi Nerida, has got a really special significance.

Kevin Barrow:

Yes, actually it was gifted to us by the local Kabi Kabi people up in the middle of the Valley.

Sam:

You might recognize that voice, that’s the CEO of the Butterfly Foundation and all-around good guy, Kevin Barrow. We haven’t spoken to him since episode one, and we really should get him on more often.

Kevin:

It means “to gather together to blossom”, which is a lovely name, and in context of Wandi Nerida very much what we’re trying to achieve with the individuals who attended the facility.

Sam:

When it opens, Wandi Nerida will be Australia’s only specialist residential eating disorder recovery centre, and the emphasis is on recovery. Using Carolyn Costin’s holistic treatment approach, Wandi Nerida aims to help people fully recover.

Kevin:

If you become acutely unwell with an eating disorder, and you end up in a general hospital, all of a sudden the focus is very much on the physical symptoms. And so, as a result, we kind of get a revolving door where that individual, unfortunately, may end up back at the hospital. Wandi Nerida will be seeking to break that cycle. We’re looking to really tailor our care to the individual, and it may take several months to teach that individual the skills for recovery. So, when they’re discharged from the facility, they’re much less likely to end up back in a hospital setting.

Zach de Beer:

I’m Dr. Zach de Beer. I’m a clinical psychologist by training, and I am the clinical director of Wandi Nerida here on the Sunshine Coast.

Sam:

Dr. Zach is in charge of the day-to-day running of Wandi Nerida, and he says that, “While a lot of the treatment has been inspired by Carolyn Costin’s treatment and experience, this is a truly Australian holistic approach.

Zach:

Our model of care is obviously based on the Monte Nido model, but we also wanted to develop something that’s unique to Australia, because you can’t really just replicate things from overseas. So, we actually wanted to incorporate all the good things in the Carolyn Costin or in the Monte Nido model, but we also wanted to add things that are uniquely Australian. Also, in the last 10 years, there have been real advances in practice and the treatment of eating disorders. And we wanted to incorporate some of those things as well. That holistic care, that is what’s required to be effective, because some of these patterns and beliefs are so ingrained that some intensity is needed in treatment.

Sam:

Before, we dive any deeper into exactly what’s going to go on at Wandi Nerida, let’s go back to Siena. She first heard about Monte Nido when she was in an outpatient program through Butterfly.

Siena:

I’d seen dozen therapists and each time, it just was back to square one. So, a lady named Christie was speaking and she had gone to Monte Nido, I think a few years prior. She kept speaking about how wonderful it was; how she recovered from going there.

Sam:

…Because, she was the lived experience person that Butterfly brought in to talk to you. Okay.

Siena:

Yes. And, I think that’s the first lived experience I’d ever spoken to.

Sam:

That’s a pretty key thing now, you were years into treatment before you started talking to people with lived experience, which is now accepted as something that is quite intrinsic in helping people to recover.

Siena:

Definitely. I think even when I hear about people struggling, I’m like, “Oh, I’d love to help them”, because I know, back then, that could have been a key thing for me. I mean, in hospital, one of the therapies could have been someone coming in to speak to you, and helping you through it, that had been through it. But yeah, none of that.

Siena:

So, I listened to her and I was like, “That’s pretty cool,” but I just didn’t think that was for me at the time. I didn’t think that it was necessary for me to go somewhere to get better. And my eating disorder was my identity. I didn’t really want to get rid of it that badly at that time. Then I went into hospital one more time and that’s when it kind of clicked. I said to my parents, “I think I should go to Monte Nido.” My parents didn’t know anything about it; they did some research. And then, within a few weeks’ time, I had begun my admission with them, and I was going over end of November.

Sam:

So obviously, a clinic which is located in the United States is not very accessible to Australians. And the expense of both the travel plus the treatment puts a visit to Monte Nido out of reach of the vast majority of Australians. But Carolyn’s model of care works wherever it’s implemented, and it works for all eating disorders, regardless of the specific —rom anorexia and bulimia nervosa, all the way through to binge eating disorders.

Carolyn:

You can mix the different diagnoses, but obviously there’s important things to pay attention to, because they’re not the same. But when you’re in a group with the different patients who meet different criteria, I mean, one of the most important things to say is, “Look, you’re all here because you have an unnatural relationship with food, and food and weight have taken a unusual priority in your life, including how you evaluate yourself.” So, what we’re going to do is get back to a natural, healthy—and I put “healthy,” in quotes—each person finds what’s appropriate for them.

Carolyn:

A healthy relationship to food and your body, that’s the goal. And so, you can mix diagnoses. You you have to be transparent; you have to be open about it. You have to say things when you’re running groups. Like, the people with binge eating disorder might say things like, “Oh, we admire all you guys who have anorexia, because you have such willpower.” And, you have to be astute as a clinician to say things like, “No, that’s not willpower”.

Carolyn:

If she really had willpower, she would eat this cookie right now. It is kind of funny, but I like to use humour. And I say this, you have to be able to know how to show people when they think their logic has turned on its head. And although, they think they might be in total control, you can show them that’s not really control. Because if it was really control, you could eat it or not eat it, but your brain now is hijacked and obligates you to not eat the cookie. So, you no longer have free will or control like you think you do, things like that.

Sam:

Carolyn’s model of care is a truly holistic approach. It manages to walk the line where mental health meets physical health with remarkable results. And it’s no wonder so many Australians had been making the journey to the United States at great expense.

Siena:

I was so malnourished; I was there for five and a half months. My brain had completely changed with food. I was able to see things more clearly, I was able to create relationships with the people in the house. And I remember all the nurses I got along with so well by the end of it. I think that really brought me back to life—I’d never had to work on that sort of stuff. So yeah, the intensiveness, and the food, and the habit breaking, and the lovingness of the staff really was the difference for me.

Sam:

And, while it was an overwhelmingly positive experience, there were still drawbacks to having to travel overseas for this kind of treatment.

Siena:

It was hard for the first few weeks. I was in a different country, I didn’t have people to just phone. There was a phone booth and people would always be in there. So, it was pretty intimidating. And, my mom could come once a day, but there’s only so much you can do in a house that’s not yours.

Siena:

I had great support back home and they checked in on me when they could. But I think the main thing that helped me was breaking all the rules, 24/7 care.

Sam:

Yeah.

Siena:

Even though you get that in a hospital, they don’t have the right team there. Everyone was in the same boat.

Zach:

Wandi Nerida will offer a very specific service, so it’s not going to be for everyone, but it is a much-needed service, and it does close the gap in services. So, it provides a potential solution for people who are medically stable, but they feel stuck with their eating disorder. Or people who have received lifesaving care in our hospital setting but feel that they are ready to do that work now.

Sam:

Siena considers herself extremely lucky to have been able to go overseas and spend time at Monte Nido. She hopes that having a similar facility in Australia is going to open this kind of treatment up to far more people.

Siena:

I think it’s long overdue, it’s very beneficial and needed. It’s pretty sad that there’s probably a lot of other people who aren’t able to go to places like Monte Nido for multiple reasons. And the only reason that they aren’t able to get help is because of that.

Zach:

We want to make sure that the model works, and we want to be fair to people. So, we want to offer this service to people who are in the right stage, and for whom it’s going to be the most beneficial. It’s is a national service, it’s partly funded by, or the setup was funded by the federal government. So, even though it’s based in Queensland, it’s not only for Queenslanders.

Sam:

Kevin Barrow says, “Butterflies vision is for Wandi Nerida to be a truly unique experience, which fills a gaping hole in Australia’s healthcare system.”

Kevin:

We have made the facility in line with the requirements for a licensed private facility, which means all the quality of care is there to be called a hospital. But we very much don’t want it to look and feel like one, its designed to look and feel like a home. And the staff working in that environment are really there to tailor therapy, care for that individual, they’ll eat meals with the individual and they’ll be part of their recovery journey.

Kevin:

The problem is if it looks, feels, and smells like a hospital, it probably is, and that’s very much the environment that we’re not trying to have here.

Sam:

Wandi Nerida could be the beginning of a revolution in treatment available to the growing number of Australians who suffer from eating disorders. And. Butterfly says, right now, that’s around a million Australians.

Sam:

And remember, this is the mental illness with the highest mortality rate. So you could say this centre is vital, but it’s not open yet and it’s facing setbacks. After a hugely difficult and costly year in 2020—we’ve had a global pandemic and devastating bush fires—the Queensland Government has knocked back a crucial funding request.

Kevin:

We have received some funding from the federal government to enable us to build the facility. Philanthropy helped us purchase the land, and we worked with our charity partner, endED, in the initial phases to build the facility.

Kevin:

Moving forward, though, we want to make sure that this facility is open to all Australians independent of their financial circumstances. So, this level of care can be quite expensive. There’s a high number of staff involved, and we’re seeking to raise funds to ensure that those people who maybe don’t have private insurance, or don’t have the financial means to pay their way to the facility, we can subsidize their attendance.

Sam:

Carolyn Costin results speak for themselves. She’s helped thousands of people recover from eating disorders.

Siena:

It’s been a long time since I’ve told people I had an eating disorder. Yeah, I just needed to have a clean slate, figure out who I really was. And now, I mean, if people would ask me, I’d say, “Yeah, I had an eating disorder and I’m recovered.”

Carolyn:

You were born with a core healthy self, and over time you developed an eating disorder self, and it doesn’t get its power from the outside, it’s not like some alien being invaded you, you give it it’s power.

Carolyn:

And so, my work involves strengthening your healthy self, and that part of you heals your eating disorder. If I could do it, so could you. I want to say, I really believe that people can get better, but I think they have to work in a collaborative place, and they have to deal with the fact that the battle not being between you and a treatment team, or you and a therapist, or you and your mom. The battle is between you and you. And, you beginning to talk back and learn how to strengthen your healthy self, so it becomes back in control again.

Sam:

If you’ve heard about this treatment plan for the first time, and you’re interested, you think Wandi Nerida might help you, or you know someone you think it might help, you can take an action now, even though the centre isn’t yet opened.

Zach:

At the moment, because we’re not open yet, there’s also an expression of interest, a button on our website. People can fill in a form, and we can then update them on developments. And, when we are ready for referrals, we could alert them.

Kevin:

It’s been a really challenging year. It’s been challenging for everyone with mental health issues within Australia. But particularly for eating disorders, COVID’s really been a perfect storm. And, as a result, there’s a huge level of demand on services across Australia.

Sam:

While those COVID restrictions around the country are starting to change, Butterfly is expecting that they will be long-term impacts from the pandemic.

Kevin:

Wandi Nerida is there to make a difference. It won’t be for everybody, but we believe it will fill a gap in the system of care. Certainly, at this point in time, there are a huge number of people in need. So, we’re looking forward to getting this facility open, and providing a new level of care in the Australian setting.

Sam:

If you’re struggling with an eating disorder, or you just think you need some support, you can call the Butterfly National Helpline on 1800-33-4673. Easy way to remember that—1800 ED HOPE. You can also chat online or check out all the resources available on the website at butterfly.org.au, or email support@butterfly.org.au.

Sam:

Now, if you want to find out more about Wandi Nerida, or you’d like to support it, go to wandinerida.org.au, that’s W-A-N-D-I-N-E-R-I-D-A.org.au. Recovery is possible, but access to effective services is essential. The number for the National Helpline, again, 1800-33-4673. The Butterfly podcast is an Ikin Media Production for the Butterfly Foundation. It’s hosted, edited and produced by Sam Ikin with the assistance of Belinda Kerslake and Camilla Becket. The theme music is from Cody Martin with additional music from Breakmaster Cylinder.

Sam:

And special thanks in this episode to Carolyn Costin, Siena Armati, Zach De Beer, and Butterfly CEO, Kevin Barrow. If you’d like to support the podcast, the best thing you can do is to share it with someone you think is going to get value from it. You can find it by searching Butterfly: Let’s Talk, wherever you get your podcasts.

Sam Ikin:

The festive season is here.

It’s a time of joy and happiness.

Seeing friends and family that we haven’t seen all year, who will no doubt comment on how much we’ve changed physically since we saw them last year.

It’s about sharing food and drink and feasting, dressing for summer, spending time by the pool, going to the beach wearing swimmers.

WHOA WAIT.

For some of us living with eating disorders and body image issues that doesn’t sound like joy or happiness at all. That sounds horrible.

No wonder the Butterfly Helpline has a spike in calls around this time every year.

But that means that there is help out there and there are some strategies you can put in place that can help you not just get through it, but to really enjoy it.

This is The Butterfly Podcast from your friends at Butterfly; Australia’s national voice for eating disorders and body image issues. I’m Sam Ikin and this episode is a festive season survival guide.

Nicki Wilson:

It can be just so anxiety provoking.

Sarah:

Especially being in Australia it’s a bit of a double whammy and we are wearing less clothes. We’re going to the beach.

Dominik:

Every time there’s something. When it comes to food, there’s always someone who talks to you about something food-related where you’re like – you start doubting yourself.

TJ:

I know how stressful it can be especially coming from a cultural community where not only is food quite a staple in celebration in events like this, but as well as the conversations around mental health aren’t necessarily as widespread or potentially understood.

Sam:

The festive season can be tough for people who are affected by eating disorders or body image issues. To the general population it’s known for an increase in feelings of loneliness, anxiety, and depression, and all of those are triggers for eating disorders.

Nicki:

It’s all that expectation of fun and feasting and socializing. We’re all supposed to love that aren’t we? And those who are struggling with an eating disorder… That’s all the stuff that is just so challenging and that they are fighting to enjoy, but it’s not coming naturally.

Sam:

In Australia where the season just happens to be at the height of summer, we tend to focus on going to the beach or hanging out at the pool.

Sarah:

We are wearing less clothes, we’re going to the beach, it might be feelings of, thinking about your body in a different way and I guess being hammered with different ads about getting your summer body ready and yeah, it’s a really tricky time of year for people.

Sam:

We start to see family members and friends who we haven’t seen all year, who just seemed to always feel it’s necessary to comment on how we look.

Dominik:

There’s always inter family stress and there’s relationships that are not necessarily always healthy and there’s other problems that have nothing to do with anything else. You get into a stressful state and you can possibly fall back into old patterns or new patterns depending on where you are.

Sam:

And then there’s the massive focus on food and feasting.

Nicki:

The festive season comes with a change in routine and this can create anxiety particularly around more times that meals are served. Most people tend to indulge in this time of year and there’s a feeling of pressure to having to do the same. All the food and the expectation that you’re going to be enjoying it.

Sam:

If you couldn’t pick the accent Nicki Wilson is from New Zealand. She’s president of the Eating Disorders Association of New Zealand. She works full-time as a volunteer, providing support for carers and advocating for improved eating disorder treatment for both patients and their families.

Nicki:

It’s really tricky. Somebody is ill with something else, whether it’s a broken knee or some other physiologically evident illness, it’s that much easier for others to see and so somehow society understands better.

Sam:

Nicki’s also the Vice Chair of the international organization known as F.E.A.S.T, which stands for Families Empowered and Supporting Treatment for Eating Disorders.

Nicki:

But when it’s an eating disorder, that lack of comprehension of how hard it is for the person themselves; I think can make it more difficult because those around you are perhaps not being as understanding and supportive as they could be. Not through any deliberate act on their part, just truly lack of understanding.

Sarah:

If there’s been some weight gain or weight loss, then, that’s often a remark that people will make when they’re connecting with other people.

Sam:

Sarah Bryan is a peer ambassador with SANE Australia, and she’s worked with Butterfly on a few campaigns in the past.

Sarah:

I have lived experience of an eating disorder and I currently work with people who are recovering from an eating disorder and people that face mental health challenges. This is the time of year where the family gets together and if they haven’t seen each other for a while they might comment on body size or their appearance. It also coincides with the new year period where people talk about their resolutions for the year ahead and I find a lot of people talk about weight loss in that sense, that could be a goal of theirs. Also a lot of comments around at the dinner table about how much food you’re eating and how you’ve been naughty or bad because you’re eating so much food and I think those things can be really triggering for people who are dealing with an eating disorder or are in eating disorder recovery.

Dominik:

You completely forget like you’ve carved out your area and your way of eating away from all that stress and as soon as you’re back in the familiar setting, you’re this kid again and you’re doing everything that you used to do and it’s not always good. You have to be really cognizant of not falling back into those patterns. My name is Dominik and I work as a computer nerd and I have lived experience with an eating disorder and feel like I have come out at the other end.

Sam:

Dominik’s in recovery and he’s really happy with where he is at the moment and he feels really comfortable in most situations, but even he feels a little bit anxious when he thinks about Christmas and the festive season.

Dominik:

Mixed feelings at this point, I guess everyone is different, obviously when it comes to family or old patterns or new patterns and emotional eating and possibly feeling overwhelmed, I’ve moved away from my family, a bunch of kilometers, so I think our relationship is much better for it as well. Obviously, Christmas or the holidays has always been wintry so coming to Australia, this is so much better. I think this is such good improvement to go onto the beach for the holidays and just soak in the sun. To me, that is perfect.

Sam:

I’m referring to this period as the festive season, rather than the Christmas season or any other denominational kind of celebration, because a large proportion of Australia’s population don’t celebrate Christmas, but at the same time still observe a celebration and a coming together of family and friends at around the same time. TJ’s family comes from Sri Lanka and they do celebrate Christmas. It’s a really important celebration for his family and you guessed it. It all revolves around food.

TJ:

When I first sort of think about this type of period of the year. Christmas time, end of the year. It’s a huge time to celebrate and I think this year, especially lots to, I guess, reflect on, be hopeful for and celebrate. But I know for me and speaking from my experience as well, it’s also been quite a stressful time of the year and even in the lead up to it because that’s kind of what I’m trying to prepare for too.

Sam:

When I was doing woodwork at school, there was a massive sign on the workshop wall that said, “An ounce of prevention is better than a ton of cure”. And I’ve heard that applied to many situations and as we approach Christmas experts urge us to put more emphasis on preparation yet again. Michelle Sperling is the Manager of Treatment and Support at Butterfly.

Michelle Sperling:

It can be useful to plan about how someone is going to manage prior to attending an event, maybe preparing a list of helpful strategies that they can refer to. We also would recommend for you to let a trusted person or people know how you’re feeling. Tell them the ways that they maybe have to support you leading up to the holiday season and on that particular day. And I think also if you are linked in with a treatment team, staying in contact with your therapist, GP, dietician in the lead up to the holiday season is also important in part of that preparation. Finding out when they will be around over this period and asking them to help out with some supports, if they’re going to be away.

Sam:

For Sarah, preparation is also really important and for her setting boundaries is something that she puts really high priority on.

Sarah:

If you are going into an event or a lunch or dinner with people who are likely to comment on maybe your body or weight, maybe setting boundaries with them and being assertive. You could say things like, “I know you comment on my weight or my body because you care about me or you think that it’s helpful, but it’s not and I need you to stop.” And this is a way you could sort of be assertive, but also acknowledge that they aren’t trying to hurt you because we know people can get defensive when they’re being told that they’re in the wrong.

Sam:

But you’re talking about honesty – being honest.

Sarah:

Yeah being honest.

Sam:

What? Oh my God! Okay.

Sarah:

I know it does sound scary to speak your truth then tell someone, “Hey, this isn’t acceptable”, but we as a society – not just our little groups, our family, our friends – but as a society need to do better and stop talking about bodies because it can be really harmful.

Sam:

To say that the festive season can be stressful, is a bit of an understatement really. A recent survey in North America reported 45% of respondents dreaded the festive season. They weren’t just worried about it, they dreaded it. for Dominik, preparing for the season is essential.

Dominik:

That comes down to everything about an eating disorder. When is it OK to say no? And when is it OK to say yes to anything food related? And it comes down to you finding a way to listen to your body. It’s finding a way to feel confident around what you’re feeling rather than what you thinking you need and saying, “OK, now I’m hungry I really want to do this.” Or “I am happy to go there because I feel strong enough to say, no, I’m not going to touch this and that and I’ll be focusing on the human interactions rather than on this bloody food.” Yeah it’s really trying to find your confidence and being honest to yourself, really understanding, OK, am I doing this because I feel like I’m going to feel better afterwards – which is, borderline disordered – or is it because it’s the right thing for me to do?

Sam:

With a little bit of preparation TJ was able to use the family tradition of storytelling as a way of bringing them with him and turning his family into a big support network.

TJ:

A few years into my mental health journey and recovery I think there were many conversations that I was having to, I guess, try and explain what my situation was. Storytelling to me and I think within my culture as well, kind of transcends language barriers. So, for me, I speak English, however, my family speaks Sinhalese and I think sometimes there are messages that are lost in translation. I think stories are able to transcend quite a few language barriers because you’re not necessarily trying to connect on having a specific piece of information. You’re also connected on feelings, which I think are really valuable.

Dominik:

Oh absolutely.

TJ:

It was a lot of conversations about how I was feeling that kind of led me and my family to the point where we were able to support each other as well.

Sam:

It’s really easy to feel as though you’re in this alone. But one thing to remember is that most people in your family are there for you and want the best for you. As a carer and now a support worker for carers, Nicki encourages people to help their family prepare as best they can as well, so that it can be a happy time for everyone.

Nicki:

Anybody who has a loved one with an eating disorder can step up and understand they have a role to do in supporting that individual. It’s for them to have as much knowledge as possible about how to support and reaching out and saying, “What can I do to help? I’m here for you”. Being confident and calm and supportive is really important – and anticipation. There will be triggers and being ready for those and being prepared and having a plan. So for instance, knowing that there is going to be a whole lot of food, that that individual might have difficulty eating the Christmas dinner with the entire extended family. Feeling watched and feeling under surveillance, whether or not they are, it is often a feeling and just getting a plan and knowing that somebody’s got your back is something that could be done in preparation.

Nicki:

Understanding that the festive season may not be experienced in the same way by all is a good starting point. So we would suggest for them to talk to their loved one about what they might be thinking or feeling or what might be challenging for them and together, collaboratively, try to problem solve and get some practical ways to minimize the distress without avoiding events and creating anxiety. Also sort of resisting making comments in front of others about what your family member was eating, how they appear, as mentioned earlier. Supporting them to have some responses in the box.

Sam:

Dominik says he likes to suggest that his family take the emphasis off food, maybe just a little bit.

Dominik:

Maybe don’t have it everywhere. It shouldn’t be the center of attention. Maybe find another thing that we can send our attention around. Like maybe we sit around the table that has a chess board on it and we just talk. It’s about talking rather than sitting together and eating. That’s another option.

Sam:

We’ve been talking a lot about doing the right thing by yourself and listening to what you need and then responding to that but what if what you need is to stay home and give that Christmas event a miss? Is that something that’s okay? We’re certainly not encouraging people to isolate, especially during this season where feelings of isolation and loneliness are so common.

Sarah:

It’s totally okay not to go because that’s something that I definitely battle with myself, but I know that I’m not doing enough to say no. If you feel brave and confident enough to not go, my hat is off to you. We shouldn’t have to do things that we don’t want to do and if you think that going to Christmas lunch or dinner isn’t going to be good for your mental health, then I really respect that and sometimes that can be the best thing to do. Just distance yourself from those events and maybe say, “Look, we’ll catch up after Christmas”.

Nicki:

If you couldn’t go because you had a migraine coming on or you couldn’t go because something happened to your child and they were unwell or whatever it may be. That is a reason to not being able to go. I think the important thing is to be upfront about that and excuse yourself and in a timely manner rather than once again going back to the situation where we’re not able to be open. It’s something that we see shouldn’t see as shameful. But rather than that, how about being able to say, “You know what, I’m not going to be able to make it. I wish I could I and I will come if I can, but I don’t think I will be able to make it”. I think that by being upfront, it’s an advantage to everybody involved including that individual who’s making their excuses.

Dominik:

There are other alternatives, whether it’s creating a plan around how you might be engaging in a situation, whether it’s totally withdrawing from it in a positive and safe way, or kind of structuring it in a way where you might be able to come along or be a part of, a certain part of the event or the celebration. Or taking some time within that to go for a walk with a friend, or have a conversation on the phone with someone, but in a separate room. I think there are different ways that we might be able to, I guess, respond in those situations in a way that is comfortable and safe for us.

Sam:

It’s good to make the point that it’s okay to sit it out as long as you’re not choosing to isolate, which could well be your eating disorder coming into play. So rather than isolate, you might look for a more fun and less stressful alternative preferably with other people who are more supportive.

Dominik:

My mental health journey also revolved around really wanting to fit into the spaces that I was in and spaces that necessarily didn’t reflect the person that I was, but I still wanted to fit in. So, I think there are ways to really take stock of that and also acknowledge that everyone’s situation is different and everyone’s relationships with their family and their friends are going to be different as well.

TJ:

Like in, in my recovery for the longest time, I just didn’t go to large gatherings of foods just because I didn’t feel safe. I didn’t feel like I can cope with it and now I’m forcing myself into those uncomfortable moments because I know when I get over them, the next time it’ll get easier and the next time it’ll get easier. So, it’s really starting to practice breaking habits and building my strength up. At this point in my recovery I think I’m pretty good with eating and around other people and just being happily very insistent on saying, “Nope, I’m good.”

Nicki:

The alternative is to find support and to say “I’d really like to go along to that event, and I don’t want to miss out because I’m worried about others’ reactions and what’s triggering in such circumstances. I’m going to see if I can develop a support structure that enables me to go”. How about that? So, talking to some trusted people and saying, “Hey, this is going to be really hard for me, but I want to be there. And these are some ways that you could assist me. Would you be willing to do that?” And to look for that person, whether it’s your partner or your parent, or your sister or brother or great mate, and being prepared and making a plan.

Sam:

The festive season is considered one of the six most stressful life events. It’s right up there with divorce, moving house, changing jobs, and a few others. It’s also a time for giving. So why not give yourself a break and practice a little bit of self-care? If you do have an increase in behaviors during the holidays, it’s not the end of the world. Recovery is a journey. Think about the changes and the progress that you’ve already made. That’s not gone. This is all part of the rise and the fall of the journey to recovery.

Michelle:

It’s normal to eat differently at this time of the year. Food is social and celebratory and that is difficult for the people experiencing an eating disorder, but it is important to remember that it is normal to be eating differently. And I guess just one final comment on preparation is to be extra kind to yourself and plan some self-care activities in the lead up to the holiday season. Maybe even think about a nice gift or treat that you could give to yourself.

Sarah:

And most importantly, treat yourself with kindness and compassion to know it’s okay to step back and take a break and not engage. I think that’s very valid. So yeah engaging in mindfulness. I don’t know if you’ve got some positive affirmations you might want to say in your head. “I am worthy”. “My value does not lie in my weight or my appearance”. Yeah, I think there are little things that you can do.

Nicki:

I really believe that those of us who are in recovery have got a responsibility to be telling the story as it is and getting the message out there one person at a time.

Sam:

Over the past 12 months, almost 30,000 contacts have been made to Butterfly’s National Helpline, which provides support over the phone, via email, and through web chat seven days a week. So, for those of us who aren’t around a support network or something to fall back on, remember the Butterfly Helpline is there to help. It’s open seven days a week, except for Christmas Day, Boxing Day, and New Year’s Day. So, if you think you might have to reach out, it’s better to do so sooner rather than later.

Nicki:

Please reach out for support, whether it be with a friend, a family member, our National Helpline – because it is fundamental to get that support and not have to feel like you’re going through this alone.

Sam:

The number for the national helpline is 1 800 33 4673. Easy way to remember that: 1800 E D HOPE. You can chat online, or you can send an email to support@butterfly.org.au. If you go to the website, butterfly.org.au, there’s heaps of recovery resources, including tip sheets for people with lived experience, as well as friends and carers, which might come in really handy around the festive season. And if you’re looking for the support networks that we were talking about before, have a look at Butterfly’s online support groups, go to the website, click Get Support, and look for Online Support Groups. That could make all the difference for you over the festive season. The butterfly podcast is an Ikin Media Production for the Butterfly Foundation. It’s written, produced, edited, and hosted by Sam Ikin, that’s me, with the assistance of Camila Becket and Belinda Kerslake. Theme music is from Cody Martin and some additional music from Breakmaster Cylinder. Huge heartfelt thanks to our guests, Sarah, Dominik, TJ, Michelle Sperling, and Nicki Wilson. And if you know someone you think might get some value from these podcasts, please share this series with them. It’s available in all the podcast places.

Episode 6: Life in recovery 

Sam:

Recovery from an eating disorder is possible.

This is the Butterfly: Let’s Talk podcast from your friends at Butterfly, Australia’s national voice for body image and eating disorders. I’m Sam, and in this episode, we’re looking at recovery with some practical tips from people who have actually done it themselves. But first, what does recovery even mean?

Mia:

Not using eating disorder behaviours to cope, that’s really how it’s loosely defined, I suppose.

Sam:

We don’t fully understand all the causes of eating disorders just yet. From a biological point of view, certain genes which affect food intake, appetite, metabolism, mood, and reward pleasure responses could play a part. We also know that certain personality traits could make people more vulnerable, things like perfectionism, neuroticism, and low self-esteem. So short of genetic engineering or a personality transplant, do we really have any chance of recovery? The answer is yes. But don’t look at me. I’m still on the journey to recovery myself. We’ve lined up a few people who have gotten there, and they’re more than happy to tell you how.

Sam:

In episode five, we spoke to Rupert, the town planner from Sydney.

Rupert:

First of all, you’ve just got to want to get better.

Sam:

Astrid lived with various eating disorders for more than 30 years.

Astrid:

There were times that I actually thought that I did want this. I did want to be well. And in hindsight, I look back and go, “No, you didn’t.”

Sam:

And Mia, who found recovery and now coaches sufferers to help them find their own path.

Mia:

We go food shopping. We go clothes shopping, especially when it comes to buying new jeans. “Please,” I tell all my clients, “don’t buy jeans without me for the first time in recovery.”

Sam:

On average, the data tells us recovery can take between one and six years, but for 25% of cases, it’s a far longer-term battle.

Mia:

I recovered from an eating disorder. Seven years ago is when I went into recovery, and I really had no awareness about eating disorders, the recovery process, treatment, nothing. So I started recording my experience through treatment and putting it up on YouTube.

Sam:

Mia talks about the lessons she learned through her recovery on her various social media platforms. We’ll put out details for those at the end of the show.

Mia:

What a waste of time and life and happiness and joy and love and opportunity and adventure and everything it is to fall into the trap of believing that you are going to be happy if you’re smaller, or that you’re going to feel more in control or more confident in yourself if you follow any kind of disordered rules, whether they’re eating disorder rules, or diet culture rules, this idea that you can’t start your life or pursue your passions or be happy or deserve love until you are fitting in this little box. I cannot express to you how distant I feel from that belief system and how much I know it’s not true. It’s like uncovering a conspiracy.

Sam:

Every person we spoke to in this episode tells us that the first step to recovery is wanting to get better, but it’s not always that simple.

Rupert:

You’ve got to want to do it for… whether it be for yourself or for the people you love. As much as I hated my parents at the time, they were definitely one reason why I wanted to get better.

Astrid:

It took me forever. I had my eating disorder for about 30 years. So when there were times that I actually thought that I did want this, I did want to be well, and in hindsight, I look back and go, “No, you didn’t because you were just fooling yourself that you actually had the intention there.” To want to get well is the key. That is the turning point, and you can’t pick when that’s going to happen for somebody. That’s where it becomes very individualised. But for me, there were several turning points in the progression of wellness, so to speak. The final one was really probably having my child and knowing that if something happened to me from this illness, that was the legacy I was leaving him.

Amelia:

It doesn’t necessarily work in a linear process. So, one day someone might be feeling very motivated towards recovery and be in action mode and reaching out and wanting that guidance. And then the next day the eating disorder might just become so strong and so difficult to deal with that that motivation goes down.

Sam:

We’ve spoken to Amelia before on the podcast. She’s from Butterfly’s National Helpline.

Amelia:

You know that when somebody is in a restrictive cycle, they’re not receiving the nutritional values they need to be able to function throughout the day. We know that obsession and thoughts about food and about the eating disorder can increase quite a lot, and it can become quite overwhelming. And so what can happen is that somebody can become very, very unwell and cognitively not be at the point where they’re even able to consider recovery or getting well, or even getting support.

Sam:

For someone who’s stuck in a downward spiral, recovery seems like a pretty big task, but our friends who have successfully recovered tell us that’s not the best way to look at it. They say to just look at the step in front of you without worrying about how many stairs there are to climb.

Mia:

I really just want you looking at the week ahead. Say for instance, somebody is delaying breakfast, they’re pushing off breakfast for hours in the morning, and we really want to get people eating more consistently and regularly. We might initially set a flexible goal to say, “Three to five mornings this week, let’s try to eat within 30 to 60 minutes of waking up.”

The following session, we look at the goal. How did it go? What went well? What didn’t go so well? And then we take the balance of that, and we apply it to our new goal this week. So it’s really incremental. It’s really evidence-based. It’s making people look at what’s actually happening versus what’s our anxiety afraid will happen, and then building that confidence over time as the brain is obviously rewiring and taking stock of that evidence. And yeah, those little incremental things that we work on move us towards those bigger, longer term goals.

Sam:

I can really see the benefit in having your little goals, rather than just looking at this massive mountain that you have to climb.

Mia:

And that is the struggle. With eating disorder recovery a lot of people come from a very, very perfectionistic temperament. So they will take the perfectionism that has really fuelled their eating disorder beliefs and behaviours to recovery, which is so antithetical to what the spirit of recovery is, which is yes, of course, we’re going to mess up. We’re going to slip up. We have to, in order to learn and make change. If you do it perfectly, there’s no room for learning. And if you’re not learning, then you’re not really changing. So it’s a really humbling experience for lifelong perfectionists to go, “Oh, wow, this hasn’t been working. This perfectionistic belief system doesn’t work, and I’ve of got to surrender to the idea that in order for me to get to the outcomes I want to get to. It’s a prerequisite. I have to be imperfect at this.” So yeah, that can be hard to get people to come to terms with but it’s very liberating when they do.

Sam:

It’s also easy to feel lonely or isolated when we’re working on recovery so experts tell us that having a reliable, unconditional support network around us can give us that little edge that we need to succeed.

Astrid:

That’s the strongest and the worst part of it, the isolation. The eating disorder thrives on the isolation and the longer it goes, the more isolated you become and the more damage it’s doing to your psyche. So that questioning of what is wrong with me, the longer you had the eating disorder, the more that becomes entrenched in how you’re seeing yourself. So yes, isolation was absolutely the biggest part. So even when I was connected in relationships and I’ve got a close, loving family, but that eating disorder was like a wall between us.

Sam:

Another thing people in recovery learn to address is this common issue of feeling safe in their disorder. For example, someone could acknowledge that it’s causing profound, emotional suffering, and they know that it could lead to severe physical consequences, but the idea of getting well just seems so overwhelming.

Rupert:

It’s easy for things to snowball and things just to happen out of habit. It’s like a lot of things in life. It’s almost like we’re a mouse on a treadmill just running around in circles, and we do things out of habit without actually stopping and stepping back and thinking about what we’re actually about to do. I think in life there’s a big difference between pleasure and happiness. Pleasure is this immediate reward but it might not bring you happiness in the future.

Astrid:

Because it is safe. It’s safe, it’s comfortable, it’s certain, it’s predictable, and it just gets integrated into your life. So yeah, resistance to change is huge, and you might not even realize it. I didn’t. Again, going back to the different levels of change, I thought I had changed. There were some things now I can look back and go, “No, I wasn’t willing to give those up at that point.” If you can think of it as a scale, the benefits of the eating disorder need to decrease, and the benefits to healing and recovery need to be weighed the other way before you start to really make that change. It’s almost that point where they’re both at the same level and something tips the recovery above the eating disorder, and that’s where you start to see real change.

Mia:

I felt like my coping mechanism, which it isn’t… If it was a coping mechanism, we’d be coping. But I felt like that was being taken as I was trying to also unravel all of this stuff that was scary and traumatic to go back and look at. And I just wanted something to keep me held together. And it was just realizing over time that not only had it not kept me held together, it had contributed to my depression in a major way. It worsened everything. It never fixed anything. It never made it better. It never gave me real solutions, and it just contributed to my decline. But that is a very normal thing to feel, to feel grief for your eating disorder, to feel like you are missing a companion or someone or something that protected you.

Sam:

We’ve talked a lot so far about how we need to want to get better before we can get there. But what if you don’t just yet? Or what if you’re not sure?

Amelia:

Not necessarily demonizing the eating disorder, understanding that certain behaviours and thoughts might be present as a way that that person has coped. It’s developed as, potentially, maladaptive behavioural traits for that person, but in some way it might be working for them or serving them. But understanding that they may, at the time of reaching out, have gotten to a point where it’s no longer serving them in the way that it has before, and they’re looking for things to be different. We often talk about the idea of what it takes to put the eating disorder out of a job. So again, not demonizing it and not necessarily telling people exactly what they need to do, but just being there to listen and support, and then hopefully guide them to a point where they might be open to receiving some more information.

Mia:

We know that people with eating disorders have very, very poor distress tolerance, and that’s why we end up turning to the eating disorder. So yeah, it’s really being able to find effective ways to manage our emotions. And it’s not necessarily the case that everyone’s going to work towards recovery. It’s really down to the individual of what you believe is possible for you, or what you think is your end goal. And I just ask people to keep their mind open to it, the possibility of no thoughts, no urges, and certainly no behaviours, and to not using eating disorder behaviours to cope. That’s really how it’s loosely defined, I suppose.

I do believe that certain areas of treatment and certain approaches we need to apply at the right time. It does require in part taking ownership of your process and realizing that yes, you can have all the support and all the resources in the world, but there is an element of just do it in recovery.

Sam:

There are plenty of barriers that can stop someone from beginning their journey to recovery, things like the shame caused by the stigma that still surrounds mental health and eating disorders, low mental health literacy, the fear of change, the cost of the treatment, or the accessibility of the treatment, which is particularly a problem for people who live in regional and remote areas. And where possible, experts recommend a multi-pronged approach. After spending 30 years trying to find recovery herself, Astrid now works as a peer support worker with Centrecare, trying to help others find recovery themselves.

Astrid:

Do you have a good GP that you trust? Let’s get you along to a group, if you’re interested. Start off coming to see me. You add then the nutritional side of things because you’ve got to look at all of it, physical, mental… for some people it’s even spiritual, and I would argue there’s a lot of that spiritual element to it. Social, that people have become very isolated through their eating disorders so they might not even say that they have a support network. So putting that in place… Identify who’s been there for you so far. Who do you trust?

Amelia:

Having supports at different stages at various points in their recovery journey is really important, even if somebody isn’t in a space where there might be what we call pre-contemplatives—they’re not necessarily in that kind of action, really strong recovery mode to be able to call and talk to somebody or have someone there that can support them and make sure that they’re feeling okay.

Sam:

And there’s one very important member of this team that everybody needs that we haven’t mentioned yet.

Astrid:

Find out who will be your hero. Everybody needs that hero that’s willing to go, “You know what? I don’t care if she or he screams until they’re blue in the face, I am not abandoning them. I will stand by them.”

Sam:

And the hero is a real person who you know who will be there with you, not like Russell Crowe.

Astrid:

He could stand by you. He’s not a bad guy, I don’t think.

Sam:

I’m sure he would if you asked him but he might not have time. He’d be busy.

Astrid:

That’s right. And look, you’re hearing from people… I also speak to people that don’t have family, and they don’t even have friends but they do have a dog that they love. They have a club that they walk into once a fortnight.

Sam:

And not everybody has access to a movie star, or finding that hero can sometimes be quite difficult. But if you need help assembling that team, the best place to start is the Butterfly National Helpline. The details for that coming up later in the show.

Sam:

Astrid also encourages people to look outside the traditional roles that make up a recovery team.

Astrid:

I spent many years just going, “I’m still not quite there. I don’t know what it is. I’ll know it when I see it.” So acupuncture, psychotherapy, what a lot of people might see as alternative, but it just expanded it. It was just expanding the learning to take it from my head to my heart to my body, then really understanding that eating disorder pattern or memory is still in my body

Sam:

A minute ago, Astrid mentioned the role of the hero. While we’re talking about heroes, we need to bring up the role of carers. Whether the carer fits the role of hero or not, they are a hero nonetheless. The role of the carer is one of the most important in any eating disorder recovery, and we’re not just talking about parents in this case. It can be a partner, a family member, a friend, or a sibling.

Mia:

The role of carers is extraordinary. It’s an extraordinarily challenging experience for carers. I think it’s important to preface that with those of you who are going through it and have people there to support you, this is a team effort. This is collaborative in a lot of ways. That doesn’t mean that support is absolutely essential. There are people who recover really doing it more on their own. That is absolutely possible. Nobody’s exempt from the process, but carers and supporters can be extraordinarily significant.

Sam:

Another key ingredient that most people we’ve spoken to on the podcast agree on is hope. You’ve got to have hope. You’ve got to truly believe that you can recover and that there’s a better quality of life waiting for you.

Rupert:

You need to focus on things outside of the eating disorder and outside of your body and outside of food in general, and just focus on other hobbies or other great things in life, whether that be travel, whether that be… You might be into ballet dancing. You might be into art. You might be into music, whatever it is. There’s so many great things in life that this eating disorder has stopped me from doing.

Sam:

Another source of hope is hearing stories from people who have been there and done it and beaten it, people who are in recovery.

Astrid:

That’s the benefit of the lived experience person, somebody who is properly recovered as well I might add, to be able to say there’s hope because it’s the hope that you lose the most of that this will ever change. I can remember years of never imagining a time where I wouldn’t be craving sugar, where I wouldn’t have those voices in my head. And I don’t literally mean voices, but anybody who’s been there knows what that is, that character in your head. I couldn’t imagine it. And so the few lines in the sand that made a difference for me, included people that said, “You can do this. And I know exactly what you’re talking about.”

Mia:

Looking forward to what is life going to be like after this thing? So I think once you give people that hope and that perspective, that starts to give them a mention and especially talking to someone with lived experience where I can say to them, “Oh, no, I get it. I get that you feel safer where you are. And I get that the future is the unknown.” But I’ve been in this space for seven years, and I have met zero respondents who have answered my question of, do you regret being recovered, with “Yes.” Not a single person in seven years has ever said, “Oh, this recovery thing is a real scam. I think I’m going to go back to my eating disorder.”

Sam:

How do you define recovery? Is it the fact that I haven’t relapsed for a few months? What does it mean?

Mia:

Well, I subscribe to the treatment philosophy that we can be fully recovered. So I would consider myself fully recovered for the last few years, which is an absence of behaviours, an absence of urges, an absence of thoughts. Do I still have bad body image days? 100%. I’m a human being. We can’t expect people with our eating disorder histories to not have bad body image days. But the way that I respond to my bad body image, my anxiety, my stress, isn’t linked to these old eating disorder patterns, because I’ve worked through those anxieties and those fears, and I’ve built up this toolkit of effective help-seeking skills, like reaching out to people. That’s a big skill. Being able to find effective treatment and resources, that’s a big skill. Being able to engage with healthy dialogue with myself, that’s an incredibly important one. Being able to distract myself to know that I can sit in those uncomfortable feelings and that nothing bad is going to happen, certainly not on the scale of me using an eating disorder behaviour. That’s going to hurt me far more than sitting in the emotion, letting it pass, distracting myself, talking to people about it, and letting it pass.

Sam:

To hear more from Mia or go to @whatmiadidnext. It’s all one word on Twitter and on Instagram or What Mia Did Next on YouTube. Now, just to recap on what we’ve learned about recovery so far. Firstly, you have to be invested. You have to want to recover. Then we heard we have to accept that it’s not all going to go to plan. A relapse isn’t a failure. It’s just part of the process. Take one step at a time. Look at the small goal that’s in front of you that you can achieve today rather than being focused all the time on the lofty goal of recovery. Reach out for support. Find that support network that works for you, and it doesn’t have to be the same as anyone else’s. Remain hopeful. Listen to the people who’ve been there before and believe that it’s possible for you. And the last one for the episode, be kind to yourself.

Astrid:

I think the ultimate thing of recovery with an eating disorder is that full acceptance of ourselves. That’s warts and all. And the warts might be a relapse, but I’m still on the path of recovery, and I’m still great just as I am. Eating disorders are very good at saying it’s black or it’s white. So you did that behaviour. Therefore, you’re back where you started. And that’s why it can take so long and be such a struggle to come out of it.

Sam:

For more recovery tips and resources, head to the Butterfly website, Butterfly.org.au, and click on the resources tab on the top left-hand side, and you’ll find plenty of additional information. You’ll also find a bulimia and binge eating self-help series, which I highly recommended. And you can find stories of recovery in the Butterfly blog, which you can also find at the top of the website. The number to call for the Butterfly National Helpline is 1 800 33 4363. That’s 1 800 ED HOPE. You can talk to a counsellor every day of the week from 8:00 AM to midnight Australian eastern standard time. They can provide free, confidential, nonjudgmental advice, or just have a chat. If you’d prefer to chat online, Butterfly can help you there. Go to the website Butterfly.org.au, or you can email support@butterfly.org.au.

Sam:

The Butterfly podcast is an Ikin Media production for the Butterfly Foundation. It’s written, produced, edited and hosted by me, Sam, with the assistance of Camilla Becket and Belinda Kerslake. The theme music is from Cody Martin with additional music from Breakmaster Cylinder. Thanks in this episode to Amelia, Astrid, Rupert and of course, Mia. And if you know of someone who you think might get some value out of this podcast, please share it with them. It’s available wherever you get podcasts.

Episode 5: Eating Disorders – not what you think

Sam:

I’m Sam Ikin, and this is the Butterfly podcast. From your friends at Butterfly, Australia’s national voice for body image issues and eating disorders. This episode’s being released in October of 2020, which is also known as Mental Health Month, and with eating disorders being the complex mental health issues that they are, we’re going to go back to the basics. Exactly what are eating disorders? You’re about to find out that they’re not what you think they are. You also probably know quite a few myths about them. We’re going to set them straight as well.

Beth:

An eating disorder is an entrenched pattern of disordered eating, and sort of thinking and feeling about body image and shape and weight and about yourself.

Christine:

You’re told, “I’m sorry to say that your daughter’s got anorexia nervosa. It has the highest mortality of any mental illness. There’s a 20% chance of mortality.” That is a huge thing to take on.

Rupert:

It happened quickly. Yeah. I lost a lot of weight very quickly, and I got put on a feeding tube. I had friends and that type of thing, and they just didn’t get it. It was so hard. They didn’t understand what was going on, and I didn’t really want to tell him because I was embarrassed about it.

Astrid:

I’m literally starving myself, and the body will try to make up for that as much as it can. So, then I’d find myself bingeing again and back into that cycle.

Amelia:

People might eat things that aren’t considered food. For example, they might eat things like dirt or chalk, soap, for example.

Sam:

Everyone who experiences an eating disorder has a unique story to tell. Over a million Australians are currently experiencing one right now and less than a quarter are getting treatment or support. It’s becoming increasingly clear that eating disorders are hugely underdiagnosed. After months of lockdown and uncertainty, frontline workers are reporting that things are getting worse.

Amelia:

We’ve had quite a significant surge in our calls, and we’ve also had an extremely significant surge in our web chat contacts as well. So not exclusively, but often, young people do tend to lean towards contacting us online. So, through our live chat service; that has increased significantly and exponentially as well, and it keeps going up, and a lot of those coming from Victoria in particular.

Sam:

I should mention that as we record this, Victoria is still in a state of hard lockdown. If you’re thinking about reaching out at the moment, we encourage you to do so. The details about how to do that will come up later in the show, including the web chat that we just mentioned. It’s a vital tool.

Beth:

I am a psychologist. My work is working with people with eating disorders.

Sam:

That’s Dr. Beth Shelton. She, like everyone who works in the eating disorders field at the moment, is busy. We were very lucky to get her on the show.

Beth:

I’m also the director of the National Eating Disorder Collaboration.

Sam:

So, if we need anyone to explain exactly what eating disorders are, Beth is the person to do it.

Beth:

It causes a lot of mental suffering and a lot of dysfunction in life, especially around food and eating, but also in terms of social life, in terms of cognition, in terms of getting on with life and having the life that you want to have.

Sam:

Dr. Shelton has much more to say about this, but first to the myths.

Sam:

Myth number one, eating disorders are a lifestyle choice or just plain vanity. This one is straight up BS, but for someone who has no personal experience or understanding, I can see why it would seem that way. The truth is eating disorders are serious mental health conditions. They’re often associated with serious medical complications, which can affect every major organ of the body. They’re caused by genetic and personality vulnerabilities, interacting with social and environmental triggers, things like body image or body dissatisfaction. The recovery process can be long and challenging for everyone involved. To dismiss it as a lifestyle choice or some sort of vanity is not only wrong, it can be harmful.

Beth:

The eating disorder that people tend to have in their minds when they immediately think of an eating disorder is anorexia nervosa because it’s the most commonly known eating disorder, and it’s because it’s the most obvious in terms of a person’s way to check an appearance. So, in anorexia nervosa, the person has ideas and beliefs and feelings around weight and shape and the control of those things, which really overtake them, and they are kind of driven in a sense to reduce the food intake that they have.

Rupert:

I was about 13 years old. When you have these early high school relationships, I dated this girl and she broke up with me for no real apparent reason. For some reason I thought it was because I didn’t have a six-pack set of abs, and that she was after someone that was more muscular or more fit. That was just what I told myself.

Sam:

Before we go any further, I should probably introduce you to Rupert.

Rupert:

I’m a 29-year-old male living in Sydney, Australia at the moment. I work as a town planner for a local council here.

Rupert:

I suppose the logic in my head was I was doing a lot of sport at the time and particularly playing soccer. I always thought maybe if I lost a bit of weight it would help me run faster as well. I’d just like to make note that I wasn’t overweight or anything at this stage either. I was just a healthy normal weight. So yeah, I suppose that kick-started everything.

Beth:

Sometimes they’re able to mask feelings in relation to that starvation kind of response, but it also tends to make people lose a certain amount of cognitive function being underweight with a starvation response, which then kind of makes a person stuck in their cognitions. Sometimes it’s very difficult to see the big picture because the brain shuts down in certain kind of way.

Rupert:

It all happened really quickly. I started losing the weight really quickly. To get the six pack abs that I was after, I started doing sit-ups excessively. I kept playing soccer, but everyone was starting to realize, all the coaches were starting to realize. They started putting me on the bench, on the sideline. I was quite good at soccer at this stage, but obviously this really affected my performance as well. So yeah, I started getting put on the bench, wasn’t allowed to play. I remember there was one time I played a full game, and I fainted after the game because I didn’t have enough, obviously, blood sugar. My blood sugar levels were too low from just not eating enough food.

Beth:

It also tends to lead to social isolation, so the person has difficulty with being flexible enough to eat with other people and to be with other people.

Rupert:

I was 13, 14 years old, and I had friends and that type of thing, and they just didn’t get it. It was so hard. They didn’t understand what was going on. I didn’t really want to tell them because I was embarrassed about it, and people just didn’t understand. At that stage, I think I was completely over the search for the six pack abs and stuff like that. I was obviously very body conscious still, but I was just stuck in this cycle that I just couldn’t break out of.

Christine:

I’m a mom of two daughters who’ve had eating disorders.

Sam:

We’re still talking about anorexia nervosa here, and we’re going to bring in Christine Naismith. She’s another person who’s devoted her life to helping people with eating disorders after experiencing them through her own daughters.

Christine:

My daughter was in year 11, very happy, healthy, bubbly, friendly girl, lots of friends, doing well at school. It all started with the year 11 formal. The group of girls decided that they all wanted to look nice in their formal dresses, so they were going to go on a healthy eating diet and do a bit of exercise. As a mom, you think, “Okay, great. That sounds fine.” So, she was actually preparing salads to take to school for lunch. I was very proud of her taking that initiative, but it soon turns out…

Beth:

So, you get this vicious cycle in the sense of restricting food and the effects of restricting food on the brain and the body and on the social life tending to reinforce that, if that makes sense. So the person’s stuck in this pattern, and it’s hard to get out of it, because of the distress that comes from changing that rigid pattern of eating.

Christine:

She lost a little bit of weight for the formal. I thought she looked a little bit thin, but she was okay. She was with her first boyfriend at the time. They had a little bit of a tiff, and he made the casual remark, “I think we need a break.” And that was enough to spiral this insidious illness out of control. She just went from eating healthily to basically cutting out a whole food group a day and became very, very sick very, very quickly. So, it was quite terrifying to have a child that will just refusing point blank to eat anything. So yeah, the start of it was very frightening indeed. No previous history, no knowledge of an eating disorder or what anorexia was. My goodness, it is a steep learning curve and a shock. It’s just a shock to any parent.

Sam:

Now’s a good time to take another break to destroy another myth. Myth number two, eating disorders are a cry for attention or a person going through a phase. Research shows that over 50% of 12 to 17-year olds strongly agreed or agreed that a person with an eating disorder should snap out of it. There are more important things in life to worry about. Unfortunately, these types of misconceptions are not limited just to the general public. A person with an eating disorder may receive similar reactions from some health professionals.

Sam:

The truth is people with eating disorders are not seeking attention. In fact, due to the nature of an eating disorder, the person may go to great lengths to hide, disguise, or deny their behavior. Or they may not recognize that there’s anything wrong. It’s not a phase, and it won’t be resolved without treatment and support. Evidence shows that early diagnosis and intervention can greatly reduce the duration and severity of an eating disorder. So, it’s really important to seek professional help at the earliest possible time. Unfortunately, it’s not something they’ll just snap out of. If you’re concerned about yourself or someone else, jump onto Butterfly’s website to find out what to do next. I’ll put out the details at the end of the episode.

Sam:

So, after anorexia nervosa, the next most well-known eating disorder is bulimia nervosa.

Beth:

What happens in bulimia nervosa is again, the person has rigid ideas and overvalued ideas about how important weight and shape might be for them as a person and really strong desire to control weight should shape. So they do the same thing. They tend to diet or restrict their intake.

Astrid:

I really used food for comfort as a child.

Sam:

Astrid Welling is a support worker for Centacare.

Astrid:

I work specifically in the area of eating disorders for the PACE team.

Sam:

I know you told me yesterday, what, what does PACE stand for?

Astrid:

Oh, sure. It’s panic and anxiety, OCD, which is obsessive compulsive behavior and eating disorders.

Sam:

Astrid spends a lot of time helping other people find recovery from eating disorders, but she has her own story to tell.

Astrid:

I was quite an anxious child and food was my friend. So that kind of implanted fairly early on, and I think most of us can trace something back to childhood around it.

Beth:

Dietary restriction naturally creates an enormous pressure on the person to eat because we are survival organisms, aren’t we, and we want to survive. So, when the body fuels itself to be underfed, to be starving, it sends lots of signals up into the brain and into the body itself to sort of eat! Get the person to eat. So the person then breaks their restriction.

Astrid:

Then I left home and very low skill set around coping, and it kind of kicked off from there. So, I found that I was binge eating to allay my anxiety, but then my body was now 17, 18, and it wasn’t just falling off like it did at 13, 14.

Beth:

Because physiological pressure builds up and psychological pressure builds up around rules and all of that kind of thing, when they eat it’s often possible for them to eat more than they want to. Or even if they don’t, they experience then a sense that they have broken the rules and experience enormous distress sometimes around that, and fears that have to do with the need to rigidly control weight, shape, and eating. So, then the person might do an activity, what we call a compensatory activity in order to compensate for the fact that they’ve eaten. So there’s only a certain number of ways that you can do that. You can do it by vomiting, or you can do it by certain sort of substances or people think they can, although they don’t work. Or you could by excessive exercise.

Astrid:

So I started to try dieting, and I found that that gave me a level of control. So I’d lose a lot of weight, but then I’m literally starving myself. Then I’d find myself binging again and back into that cycle.

Beth:

Feeling pretty bad about the eating and then doing the compensatory behavior and then going around the cycle again. So I’ve done my exercise now. I sort of feel better. I’m back in control. I’ll restrict my intake again, but the cycle keeps repeating itself because it has physiological and emotional and motivational kinds of triggers that just keep happening.

Sam:

One thing to remember about eating disorders is that the psychology behind them is very similar, regardless of the diagnosis. It’s not uncommon for someone to swing from anorexia to bulimia or other forms of the illness.

Astrid:

I really went from, for the next 30 years, I went from anorexia to bulimia, to binge eating, orthorexia, which is that real obsession and compulsion around health and fitness.

Sam

If you’re not sure about orthorexia, we’ll get to that shortly.

Beth:

There’s a growing view in the world, actually, that eating disorders, forms of eating disorders have more in common with each other than they have separations. Because it’s often true that people might have one form of an eating disorder such as bulimia nervosa, or anorexia nervosa, but that actually changes over time.

Sam:

For Rupert, switching from one diagnosis to the other was a kind of coping mechanism.

Rupert:

My parents started to notice this, and they started to make me eat more. Obviously, I loved playing soccer and being active, but they kind of put restrictions on that, unless I was eating adequate food. Then they tried to educate me that you can’t do all this physical activity, unless you’re fueling yourself a bit better. I suppose that started the bulimia aspect as well, because my way of getting around the kind of control aspect that my parents were placing on me was to eat the food to satisfy them, but then later go to the bathroom.

Sam:

So, your eating disorder transformed from what sounded like anorexia nervosa at the start to bulimia.

Rupert:

Yeah, correct. Correct.

Beth:

Diagnoses are important in that they help the field and for people who have lived experience with an eating disorder, to identify what kind of pattern of eating it is and what kind of pattern of difficulty the person has so that we can target treatments. But there’s a lot that’s in common, underneath and underlying those eating disorders.

Sam:

We still have a few other diagnoses to get to yet, but first it’s time to blow up another myth.

Sam:

Myth number three, families, particularly parents, are to blame for eating disorders. This is a common historic misconception that family members can cause eating disorders through their interactions with the person who’s at risk. Doctors even used to point to parents as a contributing factor rather than a support resource. The truth is that there’s no evidence eating disorders can be caused by particular parenting styles. Family and friends, in fact, play a crucial role in the care, support, and recovery of people with eating disorders.

Sam:

So the next diagnosis that we have to talk about is binge eating disorder, which is the one I’ve been diagnosed with, and as more data comes in, the more it seems that I’m definitely not on my own in this one.

Beth:

More people have binge eating disorder than have anorexia or bulimia. Interestingly, binge-eating disorder is close to equal between males and females. What happens in binge eating disorder is the person doesn’t necessarily restrict their intake, although they are likely to have, most of the time, some distorted and upsetting ideas around self-worth, and weight, and shape, and needing to control those in order to feel like a good person.

Sam:

Binge eating disorder’s more than just comforting. It’s a compulsion to drastically overeat, and in my experience, there’s nothing pleasurable about it. When I binge, I feel this horrible sense of shame, and I usually try and hide from the rest of the world. I feel like a drug addict who needs to take more and more bigger and bigger hits, desperate to get that high, but the high doesn’t come, and I’m left in a puddle of shame, trying to rationalize to myself what I’ve just done.

Beth:

The typical pattern will be the person would restrict a fair bit of food during the day and not eat very much. They eat a lot of food at night would be the typical pattern, but it doesn’t have to work that way. A binge, a person eats more than would be considered a kind of normal amount of food, a fair bit more than that in a certain discrete period of time and experiences feeling really out of control in their eating. It’s a very specific kind of eating that recurs often in the person’s life, more than say three times a week.

Sam:

Astrid says she gets more calls from people with binge-eating disorder than anything else, by a long way.

Astrid:

That lack of control causes you distress and affects the way you feel about yourself. There’s no judgment around the way people eat, how much you eat. I have no judgment around it at all, but if you’re judging yourself on it and feeling less than because of it, then that’s an issue, that’s psychological distress.

Beth:

Binge-eating is quite painful for most people who have it. They often feel pretty awful afterwards, but the cycle sort of drags them in. They come around and do it again. So it’s associated with really quite serious suffering for the person. It’s much more serious than I think that anyone understood when we first started looking at this pattern of behavior.

Sam:

When people start to realize that they have a problem, they’re increasingly reaching out to the Butterfly national helpline. One of the people they might get on the phone is Amelia Trinick.

Amelia:

I’m a team leader on the national Butterfly help line for eating disorders and a clinician. I’ve been working at Butterfly for just over six years now.

Sam:

Amelia says there’s definitely been a spike in calls since the pandemic struck, and we’re starting to see more and more eating disorders that don’t fit these traditional diagnoses. But before we go into them, let’s deal with some more myths.

Sam:

Now, we’re getting towards the end of the episode, so we’re going to deal with the last three nice and quick. Myth number four, you can tell by looking at someone that they have an eating disorder. The truth is eating disorders come in all shapes and sizes. You can be considered a normal size or overweight and still have a diagnosis of an eating disorder. Myth number five, eating disorders are trivial or benign. In truth, they are not. Eating disorders are complex mental illnesses that require comprehensive and effective treatment from specialists. Myth number six, eating disorders are for life. The truth is recovery is possible. Eating disorders are treatable at every age, stage, and point in a person’s life.

Sam:

The other diagnosis we need to mention is known as Other Specified Feeding and Eating Disorders – or OSFED. People with OSFED meet quite a few of the symptoms of Anorexia, Bulimia or Binge Eating Disorders but they don’t meet all the checkpoints for a diagnosis under these disorders.

This doesn’t mean OSFED isn’t as serious – like all eating disorders it’s a serious mental illness and similarly it doesn’t’discriminate and accounts for around 30 per cent of people who are looking for treatment.

And after OSFED we have a few less common eating disorders. One that Amelia from the butterfly helpline says she says reasonably often is called ARFID.

Amelia:

It’s more commonly understood or sort of known as extremely picky eating. So, somebody who experiences ARFID might show really highly selective eating habits or just feeding patterns. It’s generally, but not exclusively diagnosed in younger people.

Beth:

It’s called ARFID. So avoidant restrictive intake disorder. ARFID is a little bit different in the person doesn’t necessarily, or probably doesn’t even have any sort of real concerns or cognitions around weight or shape or the need to control food in that sense. They may have had a traumatic kind of episode with food and swallowing, like a vomiting episode that’s kind of created almost like a phobic relationship with food. So, you might have heard of people for example, who will only eat white food, or people who will only eat carrots and broccoli, or people who will only eat junk food. So highly specific sort of preferences, and where that becomes a problem is when a person isn’t able to meet their nutritional needs because they have such rigid sort of setups.

Amelia:

We’ve also got PICA, which is an eating disorder where people might eat things that aren’t considered food. For example, they might eat things like dirt or chalk, soap, for example, and other things. It’s essentially where someone might feel a compulsion or have a compulsion in order to ease distress by eating something texturally that they might consider again, a sort of compulsion towards, but doesn’t contain a nutritional value. So that can come up for people, and often, I mean, as well as other eating disorders would often be presenting alongside another co-occurring diagnosis or presentation as well.

Sam:

Lastly, disordered eating and orthorexia. They aren’t technically eating disorders but we should mention them because many clinicians believe their warning signs, and it’s a good time to start taking action before it develops into an eating disorder.

Amelia:

We really encourage people to get support before it develops into something more serious. And that’s general disordered eating. So just that disturbed eating pattern—not even just eating pattern, but also thought pattern or thoughts and feelings about themselves or about food that might disrupt their day in a negative way.  Another that floats around that’s important to mention, is orthorexia. It’s not currently recognised as an official eating disorder, but there’s this growing recognition that it might become a distinct, defined eating disorder. It essentially involves that obsession with what some people might call clean food or healthy food. There’s a real moral sort of standpoint on foods. So good food and bad food and becoming quite distressed if the food that that person is used to eating or feels morally good eating isn’t available.

Sam:

For more information on any of the diagnoses that we’ve covered in this episode go to butterfly.org.au.

Looking ahead to the next episode we will be exploring the very difficult but possible prospect of recovery from eating disorders.

Christine:

I don’t think there’s enough recovery stories out there. You just hear the doom and the gloom. It’s really important for these parents who are in the middle of it to hear the positives because they need that incentive to keep going.

Rupert:

First of all, you just got to want to get better. You’ve got to want to do it whether it be for yourself or the people you love.

Astrid:

That’s the benefit of the lived experience person, to be able to say there’s hope because it’s the hope that you lose the most of.

Amelia:

Please do reach out for support. We’ve got the most wonderful Helpline team. I cannot rave highly enough of that. On the other end of the line or the other end of the web chat or email.

Sam:

Can you throw out some details for how we can get in contact?

Amelia:

Sure. You can reach us on 1-800-33-4673. You can also email us at support@butterfly.org.au, and our website, to jump onto web chat there. It’s just butterfly.org.au.

Sam:

If you’re in Australia, that number to call again is 1-800-33-4673. That’s 1-800-ED-HOPE. The Butterfly podcast is an Ikin Media production for Butterfly Foundation. It’s written, produced, edited, and hosted by me, Sam Ikin with the assistance of Camilla Becket and Belinda Kerslake. The theme music is from Cody Martin, with additional music from Breakmaster Cylinder. Thanks to Dr. Beth Shelton, Christine Naismith, Amelia Trinick, Astrid Welling, and Rupert Luxton.

Episode 4: Young people, body image and #socialmedia

Transcript

Sam Ikin

This is the butterfly podcast from your friends at Butterfly Foundation.

Social media can really affect how we relate to our bodies. Every time we log on, we’re exposed to unrealistic body ideals. And it’s hard not to draw unhelpful comparisons to our own bodies. We know that body image develops from early childhood, and it’s more intensely shaped in late childhood through puberty. This is when body dissatisfaction most often begins. In this episode, we’re going to dive into how to use social media and stay positive about your body, especially if you’re a young person.

Jenna

At first, it felt quite toxic, and it felt like a competition on who’s the most unwell and learning about detailed behaviours and numbers.

Zak

If people are to post something, and someone calls them overweight or too skinny, it would really affect their mental health, and how they feel they need to now go about getting a more ideal body.

Danni Rowlands

People are feeling more dissatisfied and we’re having more incidents of disordered eating and eating disorders in people of all ages.

Cara Webber

We’re dispelling the myth that social media is truth. Social media platforms are very curated.

Sam Ikin

Friends, parents, teachers and wider society, including social media platforms can play a role in making or breaking a positive body image. For younger, more impressionable minds, it’s easy to get drawn into every post that you see. That makes young people particularly vulnerable. When it comes to maintaining a positive body image Butterfly has six quick tips that can make a huge difference. I’ll go through them as we make our way through the episode. They’ll be like little ad breaks, but better. Let’s do one now. We’ll be right back after this.

Ways to be #bodypositive.

Tip number one: Focus on what your body can do.

Think of the millions of unique things that your body helps you do every single day.

This is a great reminder that you’re much more than just the way you look.

For more, go to Butterfly.org.au.

Sam Ikin

And welcome back. Research tells us that most young people compare themselves to others on social media, and in most cases, they wish they looked like someone they follow.

Danni Rowlands

We know the body comparisons, at the best of times, make feeling good in our body a challenge.

Sam Ikin

Danni Rowlands is Butterfly’s Prevention Services National Manager. She’s a bit like a real-life superhero. Her job is to try to prevent people from developing eating disorders or body image issues in the first place. It’s a tough gig and every day that passes, it gets a little bit tougher.

Danni Rowlands

Through the lens of social media, that is definitely intensified as a result of having just a far greater platform and more access to people of all different walks of life, and the way that they look in the way that they live. And unfortunately, that body comparison is one of the greatest things that is driving some body dissatisfaction in young people.

Zak

Hi, my name is Zak. And I’m in year 10. I want to be a sports journalist when I leave school.

Sam Ikin

How much of a part of your life does social media play?

Zak 

A big part. It’s how I communicate with all my friends. It’s where I go to get information, pretty much. I’d say I don’t use my phone too much a day, but I use it a bit. And when I go on my phone, it’s always to check social media, talk to my mates, check what’s on Instagram. So, it plays a big part in terms of how much I use it.

Sam Ikin

Zak says that he can see the impact that a negative experience on social media can have on his classmates. And the impact is huge.

Zak

If people are to post something, and someone calls them overweight or too skinny in the comments section, it would really affect their mental health and how they feel they need to now go about getting a more ideal body. And then there’s also these really extreme fitness and weight loss things that I feel aren’t really for the better. They’re just for making money and making people feel insecure in their own bodies.

Sam Ikin

An increasing number of young people are either dissatisfied or very dissatisfied with their bodies. And more and more are using social media far more frequently. Every time someone logs onto social media, they’re exposed to the appearance, beauty and body ideals of celebrities or influencers. The problem is that it’s difficult not to start comparing yourself to them.

Danni Rowlands 

These issues are increasing, and people are feeling more dissatisfied and we’re having more incidents of disordered eating and eating disorders in people of all ages. Then the research is confirming this – that the exposure to these ideals and imagery on social media is actually having an adverse effect on body image and body satisfaction and, unfortunately, driving some more serious issues.

Jenna

When I was younger, I remember being bullied, especially over social media. And I felt like I always need to prove who I was and be likeable.

Sam Ikin

That’s Jenna. She’s an Instagram creator and influencer who suffered from anorexia since she was 14.

Jenna

I’d always see people posting their highlights, and it would make me feel like I was missing out and needed to post similar things. Even as an adult – social media being filled with mutual friends, acquaintances, people that probably didn’t care about what I was posting because we didn’t talk. But seeing highlights of people you don’t really know kind of made me feel like I didn’t fit in.

Sam Ikin

We’ll hear more from Jenna and Zack later in the show but first, let’s take a body positivity break.

Ways to be #bodypositive.

Tip number two: Question what you see in the media.

As someone who’s worked in the media for 20 years, take it from me; question everything. Next time you see an ideal body ask yourself what goes into looking that way? The answer is probably a lot of strategically placed lights and crafty camera angles.

But even if it’s not, how many people do you see in everyday life that look like that? Is it realistic or helpful to compare yourself to that standard? Chances are, you’re being hugely unfair on yourself, and you could be aspiring to standards that are all smoke and mirrors anyway. For more go to Butterfly.org.au.

And welcome back. So, teenagers comparing themselves to celebrities or influencers who post unrealistic images on social media is a driver of poor body image. But there’s a deeper, more concerning trend which is more difficult to spot.

Suku Sukunesan

It’s a downward spiral, I would say.

Sam Ikin

Dr. Suku Sukanesen is a mental health researcher and social media expert with Swinburne University.

Suku Sukunesan

Kids with eating disorders probably turn to social media for support, and also to look for similar people where they actually care and share emotional support. But then what you find is, they might be reinforcing each other. And without proper supervision or the right intervention by platforms, you find that their ideas are triggering each other and making themselves even riskier to eating disorders.

Jenna

I know for me, when I was a part of that community, I felt like, “Oh, maybe I’m not sick enough because I’m not eating what they’re eating or what if they think I’m suddenly recovered just because I ate this meal out and I’m happy”. So, it can be toxic like that, because I’ve definitely experienced that side of it. I’m sure many others do too, because see the similar things that I was reading and exposed to. So that’s very damaging as well. Posting meal plans and numbers and, yeah, body image…

Sam Ikin 

So they’re comparing degrees of eating disorder in a competitive kind of way?

Jenna

Definitely. Yeah. It’s like, who weighs this much, who’s in therapy, who’s gone to hospital… I know for me, when I posted that I was in hospital when I was a lot younger, like 14, I remember feeling like posting about it would be a reward because people would think, “Oh, she’s like, the most sickest!” And it was just very, very toxic. So I was glad that I had left those traits behind.

Suku Sukenasan

They might share images. They might share tips. What are the techniques that you actually use? What are the techniques that I don’t know? Do you have any ideas? So I’ve seen this sort of discussion going on. And to some extent they have people coaching them, or willing to become a buddy or a mentor.

Sam Ikin

Wow.

Suku Sukunesan 

And it’s almost like sharing services.

Sam Ikin

Wow. So okay, it’s almost like a dark web where they use certain hashtags to connect with other people.

Suku Sukunesan

Yes, you’re correct. A lot of discussions are coded in that sense. They use their own type of approach. So you have more codes in this sort of tribal community communication approach. And hashtags and the wording they use starts to move around. And then there’s people who would like to offer services, look for these hashtags, and then connect it to this community.

Jenna 

When I was developing my eating disorder, I felt like, well, this is my new thing. Like, I’m good at this. What can I do next? And it was interesting to see other people’s journeys, and it was just, I knew it was bad, but it felt so good at the same time because it was self-destructive for me. And I was in the mindset of, ‘Well, nothing else is better. Like I’m not doing good at school, nothing else like this is what I have, this is all I have’, kind of thing. It felt bad but good at the same time.

Sam Ikin

Zak says friends of his who are just looking for good health information, log on to social media, and end up getting what he believes is really bad advice.

Zak 

People I know that are looking to lose weight, they’ll go online, to have a look and it’s just all the wrong things, telling them what to do to. It’s like this extreme body or being super skinny. It’s like an impossible task and it forces people to eat really low amounts of food which damages their body and obviously their mental health as well.

Sam Ikin 

So it all seems a little bit dark and gloomy at this point, but it will get better I promise. This seems like a pretty good point to take a body positivity break.

Ways to be #bodypositive

Tip number three: Say “thank you”.

Next time someone gives you a compliment, try saying ‘thank you’ rather than shrugging it off. If someone says, “you look great in that outfit”, don’t say, “Well, it only cost me $15”.

Say “thank you” and acknowledge that they just said you look great. And you know what, you do look great. So, take that compliment.

Showing gratitude can go a long way to improve how we feel about ourselves. For more go to Butterfly.org.au.

So, getting back to these really unhealthy behaviour patterns on social media Danni says it’s something Butterfly has been working with social media platforms on, but it’s a really difficult thing to police. Late last year Butterfly teamed up with Instagram to run a campaign aimed at supporting positive use of social media and helping people share their lives in ways that feel comfortable and authentic. It included a series of videos on the platform itself.

Instagrammer 

I love that Instagram’s being used to share some really valuable content and educate people about social issues.

Sam Ikin

It was a really successful campaign and it saw some powerful positive content go live. But while there’s more and more beneficial content being created, the negative practices are also bubbling along below the surface.

Danni Rowlands

Unfortunately, when a person is vulnerable or if a person is unwell and particularly experiencing an eating disorder, some people will actually seek out things that will drive their eating disorder behaviour, or keep that person in a state that is, unfortunately, really unwell. So, we are aware of that, obviously something that we need to continually work with, including with the platform developers, ensuring that there are safeguards. And ensuring that there’s a consideration that there are things happening behind the scenes that are, unfortunately, a barrier to people recovering and becoming well, or living a more healthy life as a result of being stuck in places which drive these behaviours and competitive aspects of eating disorders.

Sam Ikin

So, what can we do to protect kids from this kind of behaviour? Well, Dr. Sukunesan says that he’s currently in talks with major social media platforms like TikTok and Instagram to help them integrate mental health safeguards. But he says policing the competitive behaviour that we’ve just described is easier said than done.

You said that the platforms need to intervene at some point. And we know that they intervene in political discussions and in many other ways. Is the intervention there when it comes to eating disorders?

Suku Sukunesan

I would say yes, there has been a growing sort of steps taken by certain platforms. So, some hashtags are automatically barred. But then the problem is the text space. For example, we would like to bar the word ABC. What then users start to do is they start to use double A or double B, then it becomes AABC, which still then becomes part of the conversation and still allowed, and it’s not banned. So there needs to be a bit more intelligence in understanding this.

Sam Ikin

And that’s where the eSafety Commission comes in.

Cara Webber

All of our education and prevention programs around e-safety are focused on the health and wellbeing for the mental health of all Australians, but particularly young Australians.

Sam Ikin 

Cara Webber is a senior advisor with the eSafety Commission. But before we hear from Cara we’re going to take another one of our body positivity breaks. We’ll be right back.

Ways to be #bodypositive

Tip number four: Unfollow people who make you feel crap about yourself.

For a positive newsfeed, try following people who you admire who have different interests and different body shapes.

A little bit of careful curation and strategic muting or blocking can completely change your social media experience. For more go to Butterfly.org.au.

So back to Cara Webber from the eSafety Commission. It’s her job to devise ways to educate kids and help them build resilience.

Cara Webber 

We focus on that – predominantly through schools and through the types of education that we put forward via schools, but also through messaging and campaigning directly to young people and their parents and significant adults that they might work with in their lives.

Sam Ikin

Cara says the commission is really concerned about these negative competitive behaviours, and they’re watching them closely.

Is there anything anyone can do about this?

Cara Webber 

Yeah, it’s a really great question. And one of the challenges that we face is that so much of the content that gets hosted or posted happens overseas. So you’re dealing with cross jurisdictional issues. It’s not as easy – regulating globally. We can only focus on content that is produced and uploaded in Australia. So when it comes to young people seeking out certain types of information, again, it comes back to giving them the skills to understand that it’s okay to be curious, but certainly they might find themselves actually entering into spaces that make them feel uncomfortable. Or, if they are finding their sense of identity by being able to find other people—following hashtags or joining communities that they are—making sure that they are countering that by talking openly or candidly with adults around them about what they’re doing. Making sure that they’re given the skills to deconstruct what they’re seeing.

Sam Ikin

Every second, more than 9000 posts are published on twitter. In the space of a day, almost 100 million photos and videos are shared on Instagram. Cara says given the sheer volume of content going out every single day, no platform could be expected to have a team big enough to curate everything.

Cara Webber

Until we get that huge volume of human moderators, we’re going to see stuff slip through the cracks. With AI trying to identify and automatically remove content that may be related to harmful topics, it’s very hard for AI to actually read nuance and to necessarily understand a backstory or why certain images or pictures or posts may be detrimental.

Sam Ikin

Given the sheer enormity of that task, Danni says that it’s important we concentrate on the children and helping them build up a resilience or an immunity to some of these dangerous aspects of social media.

Danni Rowlands

We absolutely have to help young people to build their resilience and ensure that the experience they have on social media is a really positive one. Unfortunately, some young people don’t realise how the messages and the imagery is infiltrating and, and how the internalisation of ideals is actually affecting them. It’s kind of like, “oh, it’s all fun, it’s all okay”. We have to keep building the social media literacy skills in young people. But the platforms absolutely have a responsibility. If they develop the platform, they’re in control of the safeguards. It’s about supporting them to ensure that the platforms are safe and do no harm to the people who use them.

Sam Ikin 

Dr Sukunesan is looking for a more long-term approach. He’s trying to encourage the social media platforms to employ clinicians themselves to help build in another level of online safety, this time around mental health.

Suku Sukunesan

And this is where the tricky part comes in. How do you resource this and how to resource the clinicians? And how do you train clinicians to support cyber psychology warfare—which I call it if I could? And this is going to be the next five to 10 years, what we’re looking at.

Sam Ikin

Let’s check in with Jenna and Zak and see if they do anything in particular to look after themselves when they’re online. But first, it’s time for another body positivity break.

Ways to be #bodypositive

Tip number five: Look for the good in other people.

Looking for the good in other people creates positive vibes and it can help you focus on your own strengths.

You don’t have to be overt about it and publicly compliment or thank them but that’s great too.

Just appreciate the little things that others do that make you feel good about yourself. For more go to Butterfly.org.au.

So back to helping young people build online resilience. Cara says the first step is to teach them what their options are.

Cara Webber 

What we really need to continue to do is help young people to understand that there’s no shame in reporting or seeking support. So when it comes to removal of content, for example, around eating disorders, often the stuff that we have removed which could be deemed as harmful or offensive to a young person or potentially damaging, has come as a result of bullying that’s occurred after those images appeared. So, we’re dealing with an issue where you’ve got young people who may be posting that into communities. It’s later when those images are used against them in a form of bullying, that we are then able to remove that content. So once a young person has reported to us that they are being seriously harassed, intimidated or abused, and often it’s through images, then we can work to have that stuff taken down. So two things there we need to make sure that young people understand. The stuff that they post doesn’t necessarily leave the internet and can be used adversely down the track.

Sam Ikin

So, once the line is crossed, then you can take decisive action. But up until then, it’s about educating and putting in some processes that might help people to navigate that safely.

Cara Webber

That’s exactly it. That’s why you’re a journalist and I’m not. You speak so eloquently. You know, that’s exactly it. Young people are going to make mistakes and they’re going to do things that perhaps have put themselves at potential risk. We need to also make sure that if a mistake has been made, or a person has made the wrong choice, that we help them to understand that they’re not the sum of their choice, that we can continue to move on and grow from our mistakes. And that if we get a young person to the point where they’re actually removing themselves from likeminded communities or unsafe communities, that we’re actually replacing that with other communities where they feel a very genuine sense of belonging. Unless you do that, they’re going to be reluctant to actually remove themselves from communities that are making them feel good, or making them feel sane in a certain way, whether it is negatively or positively.

Sam Ikin

We’re going back to Zak who’s on the ground and would be on the receiving end of a lot of these campaigns. He says a lot of the work by Butterfly and the eSafety Commission and other national bodies are really starting to work.

Zak 

It’s a topic that I feel people are becoming more aware of with more campaigns and things that are put out there. But a lot of people are still blind to the fact that these marketing ploys or these like hateful comments are normal and they shouldn’t be following them because it’s not within their best interest. A lot of people are still blind to that. And it’s not really with anyone I know. Mostly people I know are pretty aware. But you see stuff on Instagram, or Snapchat, and you can definitely say that there is a sense of blindness around the topic.

Sam Ikin

Danni Rowlands says there is a pretty simple way to tell whether or not your social media experience is healthy or not. It’s as simple as asking yourself, “is this still fun?”

Danni Rowlands

It’s okay to have fun with these platforms. But if it’s no longer fun or if you’re struggling with what you’re seeing, or you’re not liking the feelings that you’re having—and it might not be to a celebrity or an influencer, it might be a friend or another family member that you have that window into their life and what they’re posting—is to action that and to seek support. If it is becoming all-consuming and if you are thinking of the way you look or your body is not right, that’s the stuff that you need support with, because your body’s not the problem. The way you look is not the problem. Engaging in healthy and positive behaviours is what will help you to feel good in your body. And I think that’s really important.

Sam Ikin

Jenna says that she’s now in recovery, and she’s found a nice happy place in her social media world.

Jenna

I told myself that I want to be completely authentic and that I don’t care what people say. Even if they don’t accept, if they don’t like or follow, because I’ll know I’ll be writing my truth and my story and adding value to the world. Those who stay will feel genuine and I’ll feel grateful. So, I started YouTube, I was making little vlogs and videoing my recovery journey and just writing and using art as well. That’s what I basically do now, I just write about how I discovered parts of myself and how I was letting go of my eating disorder and how I work through anxiety and trauma to healing.

Sam Ikin

How is Zak, who’s in Grade 10, managing his social media experience? Well, for him, it’s all about choosing very carefully who he follows.

Zak

I love my team sports. I play footy in the winter, and cricket in the summer. And then to look after myself, it’s mostly just preparing for those seasons. But in the best way, where I enjoy it, but also feel like I’m getting something out of it.

Sam Ikin

That seems like a pretty good place to wrap things up. But we do have one more body positivity break to take. So here it is.

Ways to be #bodypositive.

Tip number six: Hang with positive people.

Surround yourself with people who get you and encourage you to feel confident.

You’re the average of the five people you spend the most time with. I think I heard that in a TED talk once. Whether it’s in real life or online, find your network and let them help you feel better about yourself.

For more go to Butterfly.org.au.

If you want some help staying positive on social media, there’s lots of resources to help you on Butterfly’s website, Butterfly.org.au. You’ll find more on those #bodypositivity tips as well as some great toolkits from Instagram produced for #Thewholeme campaign for both parents and for young people. And now there’s some new Love Your Body Week resources for schools and families.

To talk about body image and eating disorders, the Butterfly National Helpline has counsellors who know the pressures that young people face. They’re committed to providing free, confidential, nonjudgmental counselling. The number to call is 1800 33 46 73 that’s 1800 ED HOPE. You can also chat online or email support@butterfly.org.au. To contact that eSafety Commission, Cara has the details…

Cara Webber 

They should go to esafety.gov.au. There are various sections on the website that will help them with different issues and there are also areas to report inappropriate or abusive behaviours.

Sam Ikin

If you want to talk about anything we’ve raised in this podcast, please reach out. If you haven’t deleted your social media accounts after listening to this, jump on your favourite platform and get in touch. You can find all the links for the Butterfly Foundation at Butterfly.org.au. You can look me up— I’m Sam underscore Ikin on twitter. And if you like the Butterfly Podcast, please tell someone that you think might like it. Subscribe wherever you get your podcasts. The Butterfly podcast is an Ikin Media production for Butterfly Foundation. It’s written, produced, edited and hosted by me, Sam Ikin, but I do have a lot of help from Camilla Becket, Mitch Doyle and Belinda Kerslake. The theme music is from Cody Martin with additional music from Breakmaster Cylinder. Thanks to Dr. Suku Sukunesan, Cara Webber, Danny Rowlands, Jenna and Zak.

This is the Butterfly podcast from the Butterfly Foundation, your national voice for people with body image issues and eating disorders. I’m Sam Ikin. In the last episode, we challenge the stereotype that eating disorders were only experienced by women. We showed you how prevalent they were among men. In this episode, we’re going to chip away at that misconception even further.

We know that eating disorders don’t discriminate. They could affect anyone regardless of age, post code, colour, culture, size, shape, gender, identity or sexuality. And it’s those last two categories that we’re focusing on in this episode; we’re going to find out why the LGBTIQA+ community is so overrepresented when it comes to eating disorders and body image issues and what we can do about it.

Tarnia

The system we’re living in isn’t designed for LGBTI people. There is this constant performance that happens every day.

Katie

I’m proof that you can completely lose control and be in a place where you would rather die from the abuse that you inflict on your body.

Kai

A lot of it was to do with hitting the wrong puberty and trying to sort of self-medicate, I guess, through an eating disorder.

Mitch

Someone very close to me perceived my coming out as a by-product of my relapse. Only on reflection, I realised how defining that moment was for me.

Host

Firstly, let’s talk about why it’s so important to break that stereotype that eating disorders are only experienced by young, wealthy white women. We already know that about a 1,000,000 Australians of suffering from an eating disorder right now, and almost one in 10 of us will in our lifetime. But a significant number of them don’t identify as having one because they don’t fit the stereotype. It’s so bad that only 25% of people who need treatment or specialised care actually look for help.

For the LGBTIQA+ community, the risks from these conditions are even higher. Same sex attracted men, for example, are seven times more likely to report bingeing and nearly 12 times more likely to report purging than heterosexual males. Two thirds of people who identify as trans or gender diverse report limiting their eating because of their gender identity. Even in teenagers there’s research suggesting that gay, lesbian and bisexual people are at a higher risk than their hetero counterparts.

Tarnia

We do know that minority stress plays into people’s self-image helping each, and that’s something that our community really faces.

Host

That’s Tarnia Lee. She’s the head of capacity building for Q-Life, which provides free and anonymous LGBTI peer support and referrals right around Australia.

Tarnia

So being a queer person who is facing all of these things every day, it would be really easy to let any of those health issues slide, particularly if you don’t feel that there is a safe or comfortable service to access. I think you’re right, with eating disorders being such a private thing that’s often hidden, I think it’s really easy for that one to slide. It’s not a health issue that your friends or family are necessarily going to notice, or feel comfortable, or have the language to have a conversation about. So I think it would be very easy for people to say “I’m going to deal with that later, there’s so much going on.”

Host

All the research suggests that this community needs more help with eating disorders and body image issues, but everyone and every group within the community all have different challenges of their own. This is not a case of one size fits all.

Katie

Being in a same sex relationship, I think, at least for me, has the potential to become a breeding ground for comparison and competition in a way that I’m not sure, for myself at least, would play out the same in hetero relationships.

Host

When she was growing up, Katie’s eating disorder was linked to the increasingly obvious fact that she simply didn’t fit the heteronormative model.

Katie

I first started to struggle with body image and food when I was in my last handful of years in high school, and I always felt a bit on the outer and also acutely aware that I didn’t feel like I fit in or that I was on the same pathway as my peers. I mean, in terms of getting crushes on boys or similar interests. Back then I genuinely didn’t understand why, I just convinced myself that there was something wrong with me and, you know, even magazines at that time aimed at teen girls, because they were gender binary, were all through a heteronormative lens, you know, “how to get boys to like you”, “special sections and instructions for moves that will drive boys wild”, “makeup tips”, “dieting tips”. Yeah, it was, I guess, loud and continuous confirmation that you don’t fit in with what society thinks you should be.

Kai

My community faces really high rates of eating disorders, but really low rates of seeking treatment.

Host

Kai identifies as gender diverse and for him, his eating disorder and his gender identity is directly linked.

Kai

I don’t think that I would have developed an eating disorder if I wasn’t trans, because for me, so much of it was this puberty is happening and it’s wrong, and whether I was sort of self-aware of it or not, I was really just desperate to stop that from happening. And unfortunately, when you limit your food intake and you’re assigned female at birth, your periods stop. You stop developing breasts. All the things that were causing me distress were things that I could sort of stop through really unhealthy behaviours, which, ideally, I wouldn’t have needed to do. And I could have gotten medical care that could have done that in a much healthier and less damaging way. It wasn’t necessarily conscious, but looking back, that was very much a part of what was going on for me.

Scott

What will often happen is that the individual transitioning wants to embody the gender to which they’re transitioning.

Host

At Melbourne University, Dr Scott Griffiths is the expert we spoke to in the last episode. He’s one of the top minds in the world when it comes to eating disorders among homosexual men and the trans community.

Scott

If you’re transitioning to a male body, then it’s pretty common that you want your body to reflect that as much as possible. And one way to do that is through diet and exercise. And you can imagine that all of that focus on dieting and exercise to build a particular body type can correct the sort of environment where an eating disorder can flourish. Not to mention that if you do transition that society expects you to conform to that body type if it’s the gender you’re going for. So it’s not even an issue off body image and appearance. It can become one of discrimination and personal safety.

Host

So a one size fits all approach when it comes to the LGBTI community simply won’t work. Dr Griffiths says it needs a tailored approach, and health care professionals need to have specialised training or even better, firsthand knowledge of these communities.

Scott

You really have to have a holistic understanding of what it’s like to be a trans individual and to be undergoing a reassignment and the current offerings we have are not tailored to that. There’s just not enough research and not enough in the way of resources for it yet. I think that’s probably the best example off a group that is drastically under-served.

Kai

A lot of it is stigma and the people in my community, already facing a lot of stigma from their existence and their identity, they don’t want to add any more layers to that. And people tend to think that trans people are inherently mentally ill because of who we are – when really there’s high rates of mental health issues because of discrimination and other factors.

Kai

Kai says that the stigma and that unhelpful stereotype surrounding eating disorders is a massive barrier to people in his community going and getting help in the first place.

Kai

In my head, you know, eating disorders were a girl’s thing and I am not a girl, so it can’t be something that I have, I just am sick and I’m dealing with it and it’s fine. But, I found it very difficult to accept the diagnosis label of that just because of what, in my head, that meant. Obviously it’s not true, not all people who experience eating disorders are women. In fact, a larger portion of people aren’t. But, you know, that’s the sort of the representation that I’d seen as a young person. Um, and it’s exciting to see that’s slowly starting to change now. And I think that would have made a difference to how early I reached out for help probably.

Host

The more we explore the relationship between eating disorders and the LGBTIQA+ community, the more we see how diverse these disorders can be. So when it comes to prevention, intervention, treatment and recovery, one size will never fit all but to tailor treatment plans and programs we need to understand the situation better, and to do that we need research and that takes funding, Dr Griffiths says there’s not a lot of data available for same sex attracted women.

Scott

That’s not to say that lesbians don’t also struggle. It’s just that we don’t run research with lesbians, so really we speak to the experiences off gay men, bisexual men and trans men and women.

Tarnia

There isn’t a lot of funding around for LGBT health research. There are a couple of great longitudinal studies that happened over the years. The Force Study, for examples, talks about same sex attracted women and drug use, drug and alcohol use. But there were no a lot of broader health studies for our communities. It is really hard to get that accurate data.

Host

So the research isn’t there yet. But that doesn’t mean same sex attracted women aren’t struggling with eating disorders.

Katie

I felt internal pressure or a jolt of anxiety when women I’ve been in relationships with have gone on a health kick, or started working out or critiquing their bodies, partly because it would be pretty easy for me to spiral backwards in an environment that’s slightly intimate and focused on body type. But also perhaps because we live in a world with the loudest messaging that women often hear focuses on, you know, the physical attributes that are associated with successful and attractive women. It takes a lot of self-awareness to recognise if I am going into a toxic place in a same-sex relationship, becoming too focused on how our bodies look different. Is my body bigger than yours? Do I fit in your clothes? Oh, I must be fat. Oh, I must be slipping. In a way that, like when I’ve dated men our bodies are so different anyway that it doesn’t… the wiring in thinking isn’t there for me.

Host

So not fitting the stereotype is one reason why people tend not to reach out. Another is because they have had poor health service experiences in the past. Experiencing discrimination, for example, they’ll have greater difficulty reaching out in future. Tarnia Lee says those kinds of experiences are really common in her community.

Tarnia

Many parts of our community have suffered forced medicalised treatment. If you look at intersex people within our community, they’ve had these really negative forced medical interventions. So there is already a fear and a distrust around medical practices in general. It’s something to bear in mind as well, working with people who have past trauma.

Host

A lot of the body image concerns for same-sex attracted men are initially adapted from heterosexual men, according to Dr Griffiths, and when the desire to retain that particular body type becomes pathological through diet and exercise, that’s when you run into problems. But, he says, there are more layers to it for the gay community.

Scott

There additional issues in the gay community around appearance, pressure and stigmatisation. If you don’t look a particular way, we get anecdotes and anecdotal reports all the time from members of the gay community of appearance based favouritism and discrimination that is often more than what you would say levelled against heterosexual men. There’s a sense of appearance, hot housing, that its value in gay male communities is conspicuously high.

Mitch

As a gay man. There are very rigid appearance ideals within that, and there is some degree some toxicity in the gay community around ‘if you don’t look this way, we’ll reject you’.

Host

We heard from Mitch for the first time in Episode two Men, we need to talk.

Mitch

There’s this intergroup kind of rejection that I’ve noticed, and particularly on certain apps like that, there is a lot of language and dialogue around, if you don’t look this certain way within we’ll basically just reject you.

Host

As we heard in the last episode, men are reluctant to ask for help because it doesn’t conform with their notion of masculinity. Asking for help can be seen as a sign of weakness and those unhealthy ideals are also present in the gay community.

Scott

I think gay men often proffer reasons that are similar to that of heterosexual men for not seeking treatment. But we talk about traditional notions of masculinity and we think reflexively of heterosexual men. But there are masculinities in gay culture, gay male culture as well. And whilst they differ from the masculinity ideals in heterosexual communities, there are some similarities, and some of those are being self-reliant, being in control of your emotions, having your shit together, and being independently able to take care of yourself. These are present in gay masculinities is as well, and to the extent you believe in those, and you start to feel like you’re coming undone by these appearance related, diet related, exercise related issues, you might be reluctant to go and seek

help because you really just want to get on top of it yourself. It’s from where you derive up your self-worth and self-esteem and identity being able to do that. So that is a very common reason why gay men won’t go forward for treatment.

Mitch

Reaching out for help was was challenging because it was admitting A) that I had a problem and as a man, sometimes problems are perceived as weakness and that we should be stoic in the face of those challenges and get up, get on with it, get over it. But for me, it was a very gradual process of reframing what I perceived to be strength, what I perceived to be weakness. And I have always said, and I will continue to say, that I believe making an attempt to seek help and seeking help is one of the greatest demonstrations of courage, strength and resilience that not only a man, but a person can do because it’s really leaning into that vulnerability and saying, ‘I need help. I don’t know how to navigate my way out of this by myself, and I need someone else’s eyes on that’.

Host

And while getting over the manly reluctance to ask for help was a big deal for Mitch, he also had to face some very confronting opinions from people that he loved.

Mitch

It was a very challenging point, and I’ve only really been able to reflect on that in the past couple of years on how challenging that was, to come out during a very intense relapse because someone very close to me perceived my coming out as a by-product of my relapse. And that was incredibly hard to navigate. Again, only on reflection, I realized how defining that moment was for me to understand what my sexuality meant at that point. And it was completely shameful at that point, to come out to make that leap, to come out in an already vulnerable period of my life, and to have someone dear in my life put it down to it being a by-product of an eating disorder. It just angers me now, and I’m still working through the resentment towards that moment, because it’s not that. There’s nothing wrong with my sexuality, absolutely nothing, and to put it down to it being a by-product of what was the most harrowing thing in my life, it dims the light on just how proud I am to be a gay man.

Tarnia

The services that are out there are mainstream services. There are no LGBT specific services and the way that they are promoted does have a really feminine skew. It’s more than just sticking a rainbow sticker on the door to get people in it. Really, that work has to be done really broadly across the service, and then, through word of mouth. Our communities will always go the other LGBTI people first for information and support so it’s then getting word of mouth out there that services are safe.

Host

Gender and sexuality are really complex issues. When those issues are compounded with mental health issues like eating disorders, we can get an understanding of how the LGBTIQA+ community is so badly affected and why it’s so important to provide safe, accessible and specialised care.

Tarnia

It’s often a health condition that stays really secret to people. There is a lot of shame connected to it, so I think the first thing that we need to do is make our community members feel safe to talk about this amongst themselves. I think the way we could do that is by starting conversations on social media, by cross promoting services together like this, by making podcasts and interviews like this available and having the conversation within communities.

Host

While we’re working on creating a safer future, the advice we can give to people who are struggling right now is that talking helps, talking to someone, anyone, is the first step towards recovery. But if you’re not ready to talk yourself, listening to others who have been there before is the next best thing.

Mitch

In terms of being a gay man, I think there are long standing kind of systemic and societal influences in that as well, that make reaching out for health care challenging because we don’t know the health professional’s stance on homosexuality on what it means to be an LGBTQIA+ person. You know, it was up until 1973 that homosexuality was a diagnosable mental disorder in the DSM, so there is still, in my mind, a lot that we need to do as a culture around facilitating meaningful and inclusive interactions on both parts; on both the health professional and the systems in which they belong, because there is a still a perception that if I disclose my sexuality to someone, am I going to be pathologised? This is challenging when you’re going there to try and get them to help you.

Katie

Everyone carries a story and if you keep your story to yourself, if you’re if you’re the only one critiquing it, to be able to put it out there and to get others’ perspective on things, I think it can be a breath of fresh air. For me to share my story and invite other people to share their story or to kind of reflect with me on my experiences, helps me to learn and grow and maybe understand myself, how I have arrived at certain places in a in a bit more depth. If I kept it all upstairs in my head, I wouldn’t have that same opportunity.

Kai

I share my own personal experience to try and encourage more people to get the support they need. My own experience informs the research and interest that I have in the academic side of all of this that, hopefully, once we understand more about eating disorders in LGBTIQA+ people we’ll be able to streamline the kind of treatment that people receive. That’s been sort of my fight for a couple of years now – doing lots of presentations on eating disorders amongst LGBTIQA+ people, and particularly trans people, to all the health professionals that will listen to me, and all of the academics that will listen. I’m just trying to get that understanding out there that this is a common issue that people need to be prepared for in their clinical practice.

Host

Making that first step to reach out and tell somebody that you need help is really hard. And if you’re at that point right now, I see you and there are services that make no assumptions about your story and will not discriminate. Q Life provides anonymous free LGBTI peer support and referrals for people in Australia who want to talk about sexuality, identity, gender, bodies, feelings and relationships. Each state and territory has their own services. If you look up Q-Life, you’ll find one near you.

To talk about eating disorders, the Butterfly National Helpline has counsellors who receive regular LGBTIQA+ training, and they’re committed to providing free, confidential, non-judgmental counselling. They can provide referrals and information to anyone experiencing an eating disorder or body image issue as well as friends and family. The number to call is 1800 33 4673. That’s 1800 ED HOPE. You can also chat online or email support@butterfly.org.au. If you want to talk about anything that we’ve raised in this podcast, please reach out. If you’re a social media butterfly, then jump on your favourite platform and get in touch. You can find all of the links for Butterfly Foundation at butterfly.org.au. You can look me up. I’m Sam Ikin on Twitter. And if you like the butterfly podcast, please tell a friend and subscribe wherever you get podcasts.

The Butterfly Podcast is an Ikin Media production for Butterfly Foundation. It’s written, produced, edited and hosted by me, Sam Ikin, with an exceptional amount of help from Camilla Becket, Mitch Doyle and Belinda Kerslake. The theme music is from Cody Martin, with additional music from Brakemaster Cylinder. Thanks to Dr Scott Griffiths from the University of Melbourne and Tarnia Lee from Q-Life. And special thanks to Kai, Katie and Mitch.

Sam Ikin:

This is the Butterfly: Let’s Talk Podcast from the Butterfly Foundation, your national voice for people living with body image issues and eating disorders. Research tells us that when people think of someone with an eating disorder, they tend to think of a young, wealthy white woman. And while many people who do fit that description certainly are affected, it really doesn’t tell the whole story.

Sam:

In this episode, we’re going to challenge that stereotype and look at how eating disorders and body image issues affect men and boys; and why they in particular find it so hard to talk about this destructive mental illness.

Brock McLean:

It just became a really unhealthy, sort of, obsession. Just spiraled into, I guess, worse behaviors and really unhelpful behaviors.

Braiden Fitzsimmons:

It’s honestly, it’s still a daily battle. The main differences is that I’ve got three or four years of therapy under my belt now.

Mitch Doyle:

I was diagnosed with anorexia when I was 11 so it was a very crucial point in my life.

Sam:

I’m Sam Ikin, and like more than a million other Australians, I have an eating disorder. Eating disorders and body image issues come in heaps of different forms. Most common ones are bulimia, anorexia and binge eating disorders. That last one, the binge eating one, that’s me.

Sam:

Even saying it now, in the safety of my studio, reading it from a script that I wrote myself, I still feel a twinge of shame just saying the words. It’s been so deeply conditioned from a really young age that my weight is a massive personal failing, and that talking about eating disorders is not something people want to do. And it’s that stigma that makes this such a difficult category of mental illness to assess. But people affected by eating disorders are as diverse as the spectrum of disorders themselves. This illness doesn’t discriminate and while the stereotype is a young woman, boys and men are just as susceptible; we just don’t want to talk about it. There’s something built into our DNA that makes us just want to suffer in silence and hope that it all goes away; but of course, it won’t. Without getting the right help, it’ll probably get worse.

Scott Griffiths:

Men are really reluctant to go and see a doctor in the first place.

Sam:

That’s Dr. Scott Griffiths from the University of Melbourne. When it comes to eating disorder research in Australia, he is like one of the best minds that there is.

Scott Griffiths:

I run the Physical Appearance Research Team, which runs research on all things to do with physical appearance, including the psychological disorders that people can develop when appearance becomes a big problem for them, including eating disorders.

Sam:

He tells me that study after study shows that men are reluctant to engage, not just with a doctor; but with their friends; or with a psychologist; or anyone at all.

Scott Griffiths:

One of the easiest things to point blame at is masculinity and adherence to traditional ideas of that which discourage help-seeking, because self-reliance and being emotionally equipped and in control is a part of that traditional masculine archetype. And sure enough, the dudes who have muscularity-oriented eating disorders; they are particularly adherent to those ideals of masculinity. And I think that is a large contributor of why the eating disorder field just does not see those men.

Sam:

According to figures from Butterfly about 36% of people known to be experiencing eating disorders, identify as male. But Dr. Griffiths says it’s really difficult to get an accurate assessment.

Scott Griffiths:

If we assume that the eating disorders that we see and know about now are all that are out there, then men are a minority of eating disorder diagnoses; except perhaps for binge-eating disorder, when men account for approximately half.

Sam:

But he say’s we’re slowly starting to see the emergence of a larger pattern.

Scott Griffiths:

What research teams around the world are finding, is that if you accept that how eating disorder’s manifest differs depending on the population you’re looking at, it would not surprise me if there are many more men with eating disorders out there; we just don’t see them because we’re not ready to look for them; they don’t come and see us.

Hamish McLachlan:

It’s Brock McLean. He’ll kick from 30. He’s got the ball. McLean takes it. He runs in. He’s kicked! And it’s a goal!

Brock McLean:

My name is Brock McLean and once upon a time I played AFL. I played at Melbourne for six years, and I think 94 games. And then at Carlton for five years, and I think I played 63 games there, so finished up at the end of 2014. And since then I’ve been on, sort of, a roller coaster ride, I guess you could say, in terms of my mental health.

Sam:

Brock McLean is one of three men who have taken the brave step of speaking openly and publicly to us, about their struggle with eating disorders. Next, we have Mitch from Sydney. He’s been struggling with an eating disorder since his early teens.

Mitch Doyle:

I was diagnosed with anorexia when I was 11 so it was a very crucial point in my life for experiencing something completely horrendous; but also experiencing something horrendous that is perceived as female.

Sam:

And from Geelong, Braiden says he’s been experiencing his eating disorder since he was eight years old.

Braiden Fitzsimmons:

I could just physically see around me that I was bigger than a lot of my mates. Yeah, and I guess that then introduced the thoughts around, “Well, why am I bigger than my mates?”. And it was made quite clear early on that this was a bad thing. So, it was always constantly, growing up, something that I thought I had to change. I always thought I had to change my body in the way of losing weight.

Sam:

Body dissatisfaction is a huge risk factor for eating disorders, especially among younger men and boys. And remember, high-performing athletes in male competitions tend to be young men. Brock McLean describes himself as an all-or-nothing kind of guy; whether it was study, footy training, or nutrition. If Brock perceived at the time it was worth doing, he was all in.

Brock McLean:

There was a period in my career where I was injured a lot and my leg speed, which wasn’t great to start with, became even more troublesome. So, part of my solution was to strip a bit weight. I was naturally a big solid guy; I wasn’t overweight or anything, I was just very…a stocky build. Myself, and the clubs that I were at, just felt that if I shed a few kilos, that would really help me I guess, with my running capacity. Maybe also help out with a bit of my speed as well. So, my diet became integral to, I guess, that aspect of my life.

Brock McLean:

I was a very all-or-nothing person so, when it came to dieting and eating the right food, I took that very, very seriously. And I became quite obsessive. A lot of weighing food and depriving myself of some of your junk food, or your bad foods, just so I could say to myself that I was doing everything in my power to do the right thing in terms of my diet and it just became a really unhealthy obsession. It just spiraled into, I guess, worse behaviors and really unhelpful behaviors.

Brock McLean:

I mean because I’d told myself in my head that if I ate anything sort of bad, or that wasn’t nutritious or healthy, that I was going to put on weight. In effect that was going to affect my football career and things were going to get worse, and eventually I wouldn’t get picked for the team. And that would be my downfall. So, it just became this really, really unhealthy obsession. Just very out of touch with reality and playing a really unhealthy story out in my head that if I ate anything bad, that that was going to negatively affect my football career.

Sam:

So Brock’s experience is from when he was a young adult, but there’s increasing data telling us that body image issues are affecting people much younger. A recent study found 55% of boys aged between 12 and 18 wanted to alter their body in some way. While another found half of 14 to16-year-old boys were taking muscle-building supplements.

Sam:

Earlier, Mitch told us he was diagnosed with anorexia at the age of 11. And for him, it compounded from there.

Mitch Doyle:

11 is incredibly young and we do know that eating disorders are manifesting in young people which is heartbreaking. Childhood is such a vulnerable period of development and, in my mind, it’s a period where kids should just be allowed to run free in the world and be innocent. And to spend what was the better part of my childhood and adolescence and early adulthood, in a place of negative introspection where, everything I articulated about myself was negative and how I looked and how I appeared to the world – and coming out as gay in that instance. I remember I came out first when I was 16, which was at the peak point of quite a significant relapse for me. Those years were like a rogue firework in a tin shed. It was everywhere and it was loud and it was noisy and it was bright and it was weird. Things did get bad there for a period of time, particularly in my early twenties.

Sam:

For reasons that we’ll get to shortly, men are far less likely to ask for help with eating disorders than women. For Braiden, that reluctance to reach out almost had tragic consequences.

Braiden Fitzsimmons:

I did everything wrong in the sense of, I bottled it all up and it got to the point where it was very unbearable, and I felt like taking my own life was the only way out of this. And obviously I was unsuccessful in doing that, but from there I was taken the hospital, and then that’s where it was all brought to my family and my close friends’ attention that I was really unwell and really struggling. And then that’s how I got the support that I needed.

Sam:

Back in the research lab at the University of Melbourne, Dr. Griffiths tells us there are lots of ways that men and women differ in the way their eating disorders present. So, if we’re looking for the stereotypical behaviors usually associated with women, it’s easy to see how eating disorders in men could go unnoticed.

Scott Griffiths:

Men on average tend to be quite different. It stems from the types of bodies that men and women want for themselves. If you take a hundred boys and a hundred girls, and you say, “Hey, what do you want to look like? What stresses you out? How do you think you should look?”, they’ll give very different answers. Girls will describe wanting to be thin or skinny or toned. They probably won’t mention things like their height, for example, or to be conspicuously muscular. But boys will. They’ll use terms like, “I want to be stacked”; “I want to be built”; “I want to be tall”. And the basic thesis is that eating disorders reflect the differences in how people go about trying to get those bodies for themselves.

Sam:

Brock said he had a lot of trouble accepting that he had a problem in the first place, and he was reluctant to make that first step and just reach out and tell someone that he had a problem. As far as he was concerned, it was a sign of weakness and football players need to be strong.

Brock McLean:

I was never someone who was comfortable with talking about feelings or what was going on inside my own head or my own body, let alone something as serious as an eating disorder. That was always a real struggle for me, and on top of that, I grew up in a very old school family. No complaining. No whingeing. It was just…anything that happened to you, you just had to suck it up and get on with it and just deal with it. Having that added unseen pressure that I put on myself: that I’m old school, the family’s got to see that I’m tough, I can’t complain – that just compounded everything as well.

Brock McLean:

It all just started just by going to a psychologist, that was over three years ago and even then I was very reluctant and very hesitant to speak openly and honestly. Just because of the stigma; if you speak up and ask for help, that it’s a sign of weakness. In fact, it was the complete opposite. To go to someone you don’t know and put yourself in a really vulnerable position, say “Hey, I’m struggling here”, “I’ve got this going on” or “that going on”, is a huge sign of strength. So, changing the storyline in my head was something that took a lot of therapy to get to a point where I could see it as a sign of strength and not as a sign of weakness.

Sam:

Mitch from Sydney also struggled with the stigma that comes with being a man. But as a gay man, there was another level of complexity.

Mitch Doyle:

There were these compounding elements of eating disorder, masculinity and the conflict between that; of experiencing a disorder that is predominantly seen as female, which threatens that masculine aspect, but also at the same time, not identifying with the masculine aspect because of my emerging sexuality. So, there was all of these things that acted as a melting pot to an experience which was just confusing and complex and overwhelming.

Mitch Doyle:

What drives eating disorders and what drives negative body image are distorted thinking patterns around body image, around how we think we look, and how we feel about our bodies; how we compare ourselves to others; the societal impacts of pumping out unrealistic appearance ideals into the culture and saying, “As a male, this is how you should look”, “As a gay male this is how you should look”, “As a straight male this is how you should look”, “As an athlete this is how you should look”, “As this, this is how you should look”. And we know that’s not the case. We know that there are so many unrealistic expectations placed on young people and people of all ages that cause, or at least contribute, to negative thinking about their appearance. Because we do compare. We’re wired to do that to some degree, especially when we compare and say, ” I’m less than that”. But that image that I’m comparing myself to is actually fake. We’re fighting a losing battle.

Sam:

Back in Geelong, Braiden can relate to both stories. He says the stigma was a major factor in his reluctance to seek help until it was almost too late.

Braiden Fitzsimmons:

‘Taking the Mickey’ out of your mates about the way they look, and how you greet them: “Hey, how are you going big fella?” All that kind of stuff emphasizes the anxiety around talking about it because a lot of people, a lot of blokes… If it is seen as more of a woman’s problem to talk about the way you look, it just gets all bottled up and then gets to that point where you just don’t know how to bring it up, or how to talk about it, so you just suppress it for as long as you can. I think as I got older and the longer that I dealt with the eating disorder alone, that the harder it got to reach out for help.

Braiden Fitzsimmons:

And I guess the stigma side of it was: For me coming from a particular sporting background, where there’s so much focus on your physical health, and how you’re performing on the field or on the court, and what you look like while you’re doing that, that there’s never any room for a conversation about how you’re actually going mentally. It was definitely a real struggle to even just comprehend that I could get help. Because I think for a long time, I didn’t even know that there were services available, things like Headspace and that, that are free for kids and for youth and that. So, it was also just that knowledge of just not even knowing that those things even existed.

Sam:

Overcoming these issues and encouraging men who are at risk to come forward and ask for help requires a bit of out-of-the-box thinking, according to Dr. Griffiths. In order to reach men, you have to go where they already are. He says one of the most successful surveys taken recently was called Gay Bodies Worldwide, and to reach their target audience, they used a platform they already knew was being used by gay men. They ran advertisements in the hookup app Grindr. And the results were record breaking.

Scott Griffiths:

Ultimately recruited 8,000 people into that study, which is the largest longitudinal study of gay men in history. We did that on a $30,000 budget.

Sam:

So they found the platform that they would use to reach the target audience, and then they designed the campaign. But how could you apply that logic to other demographics? Or to reach a broader category of men? As an example, Dr. Griffiths points towards a group on the social media platform, Reddit.

Scott Griffiths:

This is just where men congregate to talk about steroids and their reasons for using them, and how to do it safely. And advertisers won’t touch this subreddit because it’s involved an illegal activity. The only advertisers doing anything there are advertising supplements and, largely fake, steroids. If someone wanted to reach a community of 80,000 individuals, of whom a very substantial proportion are going to have the type of thinking and worries that characterize eating disorders, that could be done.

Sam:

For people who are concerned that they might have a problem, the best place to start is the Butterfly Foundation. I’ll throw out their contact details at the end of this episode. For example, they could put you in touch with a psychologist near you who specializes in eating disorders. Wherever you do go for help though, that first step needs to be: reaching out and telling someone what’s happening. Each of our guests for this episode struggled to take that first step, and the stigma played a huge part in that. But when they did, it opened up lots of possibilities for recovery. For Brock, it was the body whose job it is to look after the wellbeing of football players, the AFL Players Association.

Brock McLean:

I got in touch with the AFLPA who have been absolutely fantastic for me in my recovery journey, and they’ve provided all the psychological services and mental health, wellbeing services; they provide all those to their ex-players free of charge. So that was the first step; and then seeing my current psychologist; and then eventually seeing a psychiatrist; and my two stints in the Melbourne clinic, which is a psychiatric clinic here based in Richmond. So the AFLPA pays for all my stays there, so they’ve been absolutely amazing and instrumental. But reaching out to them, first and foremost, got the ball rolling. And got me started on my mental health recovery.

Brock McLean:

The biggest thing: I’ve always been a very impatient person, so my mindset when I started seeing my therapist was; I just want to be fixed; I just want to get this done and dusted. And really, it’s not just going to happen in one or two or six sessions. I’ve been seeing a psychologist every week for over three years. So, you can get better; you can unlearn bad habits; you can rewire your brain; you can remold your brain; but it just takes a lot of time and hard work and effort; and patience; and taking a long-term view approach to getting better. I think the one thing that people really need to realize is, as I spoke about before is a holistic approach. You’re going to have to make changes in your life. But first and foremost, find a psychologist or whoever your therapist is that you really resonate with and you really connect with. Because from what I’ve read and what I understand, from my own personal journey, is that’s the most important thing in your recovery efforts: The connection you have with a psychologist.

Sam:

For Mitch, it took a long time to find that path to recovery. But now he works for the Butterfly Foundation using his experience to help others take that first step to tell someone about it.

Mitch Doyle:

My lived experiences is something that I’ve learned to harness, and use, for the better sense of the word, use for a purpose of good; and to educate; and to advocate; and to use as a point of empathy too. Because I understand when I’m hearing people’s stories, that I can say, “Oh, that would be tough”, but to actually really understand how tough that is, offers a sense of “I’m here with you in that”. And because I know how vulnerable it can be for people to share their stories and I know how nerve wracking it can be because, as we know, an eating disorder and body image difficulties are incredibly insidious and shrouded in a deep sense of shame and guilt, and it’s exactly those feelings of shame and guilt that, to some degree, prevent people from wanting to share their experience. And sharing their experience could be with anyone. It could be with…the first time that they share with a health professional, a friend, a family member, a partner. So being able to actually draw upon my own lived experience to say, “I know how tough that is”; it offers accurate and empathy and a chance to actually get on the same page as someone and know what they’re experiencing, to help them push through that nervousness and anxiety around sharing their experience.

Sam:

Braiden found his road to recovery when he finally reached out to a psychologist who helped him identify the problem, and then helped him find specialised care. But he says, it’d be much easier for young people if more celebrities and people who already have a platform, people like Brock McLean, spoke publicly about their struggles.

Braiden Fitzsimmons:

If you’ve got people with a following, whether they’re athletes or actors or whoever they may be, I think when we look at those people, we put them on that pedestal that they’re almost not human, and that they don’t struggle with mental things that you can’t see; And that’s because they’re so good at what they do, or they have all this money. And I think if more of them were to come out and talk about their experiences in a real educational way, I think it definitely normalises these thoughts that we have, and bring people together, and understand that: One, there is help out there. Two, you’re not alone; and, three, something can be done about it. You don’t have to live like this the rest of your life.

Sam:

Having those conversations, providing a platform and allowing people to speak publicly about their experiences is what we do here at the Butterfly: Let’s Talk Podcast. But looking to the future, Dr. Griffiths says we need a large-scale change in attitude, or what he calls, “a reckoning”.

Scott Griffiths:

We’re approaching the point where technology is allowing us to shape our appearance in increasingly radical and permanent ways: whether that’s advances in plastic surgery or the advent of gene editing for embryos; things that allow us to shape our appearance to be more in line with an appearance that we value, but which is largely, I would say, co-opted by what society values or deems attractive. So, if we’re going to reconcile with these technologies, we have to reconcile with how important we want appearance to be in our lives, because it is just unfair to have people valuing their appearance and to manipulate their body weight, and then to turn around and call them vain or tell them to outright stop, when all of society clearly values it so much. I think it useful for a reckoning where we decide, hopefully, that it ought to be a lot less important, because unless we do that, people will still get caught in this bind.

Sam:

If anything from this episode sounds familiar, or you think you want to find out more about eating disorders, I really encourage you to reach out. The Butterfly National helpline is free, safe, and confidential. It’s open to everyone. Call 1-800-ED-HOPE. That’s 1-800-33-46-73. You can also chat online or check out all the resources available at the website, butterfly.org.au, or you can email support@butterfly.org.au.

Sam:

Now we know that recovery is possible, but effective services are essential. So that number again, 1-800-ED-HOPE. That’s 1-800-33-46-73. The butterfly podcast is an ICAN media production for the Butterfly Foundation. It’s hosted, edited and produced by Sam Ikin. That’s me. With the assistance of Belinda Kerslake, Camilla Becket and Mitch Doyle. The music is from Cody Martin and Breakmaster Cylinder. With special thanks to Brock McLean, Braiden and Mitch, for taking the huge step of sharing their stories. If you know someone who you think could benefit from hearing this podcast, we’d really appreciate it if you could share it with them. Or subscribe to Butterfly: Let’s Talk wherever you get your podcasts.