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 on the platforms below anywhere else you get your podcasts.

Episode 9: The tough truth about diets

Every January millions of us start a new diet or health program, and then abandon our new year’s resolutions by February. It can leave those of us who have dropped whatever regime we’ve chosen this year with feelings of failure–and possibly worse about ourselves than before. This has a lot to do with the fact that messaging around health and weight is focussed on thin, muscular bodies that are unrealistic for most human beings.

The dieting industry doesn’t allow for diversity in body size. Whatever the current language it uses, we’re still being told that our bodies are problems that need to be fixed with restrictive dieting and exercise programs. But the tough truth is that weight-loss diets don’t work. For one thing, they are a known trigger for eating disorders.

In this episode, we hear from dietitians Shane Jeffreys and Fiona Willer and others with lived experience who help people recover from their eating disorders by rethinking the impact of restrictive diets. You can feel good again, so let’s talk.

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.

Episode 8: A game-changing approach to care

Carolyn Costin swears full and complete recovery from an eating disorder is possible. For more than 40 years, she’s been changing lives through her revolutionary model of care. It was the basis for the Monte Nido residential treatment centres in the US, which have helped thousands to fully recover. Her treatment approach is also the basis for Australia’s first residential recovery centre, Wandi Nerida. It’s a place where people can create new beginnings.

In this episode, Carolyn tells our host Sam how she developed her model of care at a time when eating disorders were so misunderstood. Siena Armati, who travelled all the way to the US to attend Monte Nido after going in and out of Australia’s hospital system for years, explains why Carolyn’s approach saved her life. Wandi Nerida’s Zach de Beer and Butterfly’s Kevin Barrow explain why the centre is indeed a game-changer. Let’s talk.

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.

Episode 7: Navigating the festive season

It’s that time of the year again. Meeting family and old friends to celebrate over food and drink. But for many living with eating disorders, the festive season can be a minefield that sparks anxiety whenever we think about it.

The Butterfly Helpline reports a spike in calls from people looking for support at this time. Still, there are ways to navigate the festive season and thrive.

In this episode Sam finds how people in recovery prepare and deal with the all the seasonal triggers. He talks to Nicki Wilson from FEAST, Michelle Sperling, Butterfly’s Manager of Treatment and Support and three people who share their experiences from when they were struggling and how they learned to cope with the increased stress and triggers that can be part of this time of year.

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

We may not yet fully understand all the causes of eating disorders, but we do know that recovery is always possible. In this episode, Sam Ikin talks to people who have recovered from their eating disorders in order to find out what worked for them. Spoiler alert: It’s usually a bit of a multi-pronged approach.

After seven years, Mia lives in full recovery from her eating disorder and now works as a recovery coach to help others find their way to wellness too. Rupert suffered as a teenager and as a young adult, but once he decided to choose recovery, he became progressively healthy and is now living life free of his eating disorder.  Astrid lived with her eating disorder for almost 30 years before she finally committed to becoming well.

Recovery can be a winding road, but you can get there in the end, and there are things you can do that can make all the difference. Let’s talk.

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

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