Talk to someone now. Call our National Helpline on 1800 33 4673. You can also chat online or email

Talk to someone now. Call our National Helpline on 1800 33 4673. You can also chat online or email

Butterfly: Let’s Talk podcast

People affected by eating disorders often feel isolated and alone, because the conditions are not something we hear about much. But more than one million Australians are affected by them right now. Butterfly is a voice for change—because everyone deserves care and support.

Our podcast connects you with experts, people with a lived experience and their families and carers. Whether you’re personally affected, you’re caring for a friend or family member, or want to find out more about body image issues and eating disorders, Butterfly: Let’s talk Podcast is a great place to start.

Our host, Sam Ikin, wrote about his lived experience for the ABC’s The Drum website in 2014.

Listen here or on Spotify, Apple Podcasts, Google Podcasts, Deezer or anywhere else you get your podcasts.

Episode 5: Eating disorders - not what you think

What do you think of when you hear the words “eating disorder”? Chances are, they’re not what you think.

This episode is being released for Mental Health Month 2020. With the diverse ways in which eating disorders can occur—along with the many unhelpful myths about them—we’ve gone back to basics. We talk to Rupert about how his disorder evolved, to Astrid about what she learned about herself, to Christine about caring for a daughter whose illness progressed rapidly, and to psychologist Beth Shelton, who also directs the National Eating Disorders Collaboration.

Eating disorders are hugely under diagnosed, yet they can have serious consequences for both a person’s physical and mental health. Understanding the basics are key to diagnosis, treatment, care and recovery. Let’s talk.

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

Social media is a huge driver of body image issues and young people are particularly at risk. Packed with unrealistic images and ideals, social platforms can be an incubator for mental illness – including eating disorders.

In this episode we hear from young Instagram creator Jenna Abbasi who explains how social media affected her eating disorder. We also talk to Zak, a year ten student, about how he manages his social media experience to stay body positive. And we hear expert advice from Danni Rowlands, Butterfly’s National Manager of Prevention Services, Suku Sukunesan, expert researcher in Applied Social Technology at Swinburne University, and Cara Webber from the eSafety Commission. Let’s talk.

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.

Episode 3: Let’s Talk: Gender, sexuality & eating disorders

One million people in Australia will struggle with an eating disorder during their lifetime, and a significant number belong to the LGBTIQA+ community. Yet only 25% of those living with an eating disorder will ever seek help because they don’t fit the stereotype.

The history of discrimination against LGBTIQA+ people, along with not enough trained professionals to serve this community, is why many do not get the treatment they need. The good news is there are people working to change things. In this month’s Butterfly: Let’s Talk podcast, we talk to Katie, Mitch and Kai about their recovery, and Dr. Scott Griffiths and Tarn Lee from the National LGBTI Health Alliance who work in the space. Let’s talk.

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.

Episode 2: Men, we need to talk

Men, we need to talk. The stereotypical eating disorder sufferer is a young, wealthy, white woman, but there’s a lot of evidence telling us that the stereotype is inaccurate.

Based on current numbers, one in three people living with an eating disorder is male, and there are a lot of men suffering in silence. In this episode of the Butterfly podcast: Let’s Talk, one of the country’s top eating disorder researchers, Dr Scott Griffiths, says there could be a significant number of dudes with eating disorders we don’t know about.

“Men are really reluctant to go and see a doctor in the first place,” he tells us.

That rings true for the three men we profile in Episode Two of Butterfly: Let’s Talk, including Carlton and Melbourne Football star Brock McLean.

The truth is, anyone, from high primary school kids to middle-aged men—including sports stars like McLean—can get an eating disorder. This mental illness doesn’t discriminate.

Episode 1: Let’s Talk: the tyranny of distance

There is a critical shortage of adequate support for people affected by eating disorders who live in regional and remote areas. We can all relate to feelings of frustration and distress after months of living in isolation during the COVID-19 event. But for people who live in remote and regional areas, the experience of isolation from desperately needed services and treatment will continue long after the pandemic has passed.

In this episode, we talk to three people who all have very different lived experiences but who have all experienced the tyranny of distance. Butterfly CEO Kevin Barrow joins the show to give his insights into why someone’s postcode can make such a massive difference to their chances of recovery and what Butterfly is doing to bridge the gap