Eating Disorders: Past, present and future care
To mark 20 years of service to all those affected by body image issues and eating disorders, our new podcast looks at the past, present and future of care. Sam talks to Claire Middleton, the desperate mum who started Butterfly from her kitchen table and in doing so changed hundreds of thousands of lives. He also talks to Shannon Calvert, who lived with an eating disorder for 30 years and has become a career advocate for the voice of lived experience. She currently serves on the Australian Government’s Eating Disorder Technical Advisory Group. Representing the future is Melissa Keller-Tuberg, a young Youth Research Council member whose mission is not only to break down barriers to help seeking, but to build a future that promises more inclusive and more effective prevention, intervention and support.
Sam Ikin 00:00
Hey there, it’s Sam Ikin, your host, I know you were expecting the theme music to kick off as soon as you hit play, but I just want to jump in and explain something before we kick off this episode. So we started this show in the middle of lockdown back in 2020 when the world had gone crazy, and everybody was worried about being face to face. So we do everything completely remotely, and we go to great lengths to get the best audio that we can with what we have. In this episode, however, we’ve fallen a little bit short of our regular standard, and I’m sorry about that. Some of the interviews we’ve done are a little bit scratchy, and one of them’s done over the phone. But this is a really important story to tell, and I promise you, it’s worth it. So that’s it for my disclaimer on with the show.
Shannon Calvert 00:48
Back in the day, we were looking at someone to blame for an eating disorder, whether it was within the family or by something that had happened in a person’s life.
Claire Middleton 00:57
Families were excluded from the treatment in hospital. They were treated appallingly.
Melissa Keller-Tuberg 01:03
It was almost voyeuristic and othering, and this strange perspective of almost morbid curiosity for an experience which was outside of the quote-unquote normal. It was not at all humanising. Not at all, holistic or person-centred, or any of these other words that we like to aspire to show in our care.
Claire Middleton 01:25
A friend rang and said, I heard x’s daughter’s got bulimia. And I said, oh, that’s terrible. Get her to ring me, and I’ll help her out. She said well, it’s hardly surprising. Look at the mother. You know, those sorts of comments.
Shannon Calvert 01:39
If I take a helicopter view of what’s happened over the past 20 years, things have changed significantly. And I think if we can achieve what we have in 20 years, I can’t wait to see what we can do 20 years ahead of us.
Sam Ikin 01:52
Over the past two decades, our understanding of mental health conditions, including eating disorders, has grown exponentially. This is Butterfly: Let’s Talk, I’m Sam Ikin, and this is a pretty special episode for us. This one’s being released in May 2022, 20 years after the butterfly Foundation was first created. And while we want to have a look back so that we can appreciate how far we’ve come over the last two decades, we’re also going to look forward to what could be in store in the next 20 years.
Claire Middleton 02:21
My name’s Claire Middleton, and I founded the butterfly foundation nearly 20 years ago, actually in 2002.
Sam Ikin 02:31
We couldn’t think of a better person to go first than the woman who pioneered the way in creating Australia’s first organisation representing people affected by eating disorders and negative body image issues.
Claire Middleton 02:42
And I have been a sufferer of binge eating, bulimia, anorexia, I have suffered depression and anxiety amongst all of that. And in response to my two daughters getting anorexia and discovering that there was absolutely no help that was effective, I could see lots of flaws in the system—and so started Butterfly.
Sam Ikin 03:09
If we go back 20 years and talk about what was the state of awareness and attitudes toward eating disorders 20 years ago, what was it like?
Claire Middleton 03:17
It was absolutely appalling. So when my daughter’s got sick, one before the other, I was just terrified because, having been there, I was saying, don’t do this. Please don’t do this.
Sam Ikin 03:32
Having been there from the very start, Claire Middleton has seen the best and the worst of how eating disorders are treated through the health system. She’s also seen a shift in the way that society views and talks about them.
Claire Middleton 03:45
I think a classic is after I’d launched and the press got ahold of, you know, the whole story and I got a request from a magazine to do a cover story on the girls and the foundation, and one of the questions was, “Could you please provide a photograph of your girls at their worst?” And I said, yes, sure, but you can do it yourself. I said, just print a black page. And she said, what are you talking about. I said you don’t understand an eating disorder is a mental illness. And that there worst it was like, it was so dark and so black. But I knew what she was wanting, wanting to focus on the physicality. And I wasn’t going to give it to her, and I didn’t give it to her.
Sam Ikin 04:32
Claire has always been aware of the stereotypes and the harm that they can cause. And that’s obviously what the magazine editor wanted to amplify, but the pictures. These days, we know that you can’t tell if somebody has an eating disorder by the way they look or by any other immediately identifiable trade about them. The misconceptions and stigmas around eating disorders are shifting, but there are still many hard-to-budge myths. While we’ve steadily been chipping away at those, we still have further to go with research, diagnosis and care to reduce the prevalence of eating disorders. So 20 years ago, what was it like dealing with treatment and recovery way back then.
Shannon Calvert 05:11
Trying to access treatment specifically for an eating disorder was so complex. I remember making several calls and had that many offices turn me down, saying, “Oh, we don’t treat eating disorders,” yet I was calling mental health specialists. So when it came to actually identifying what my initial concern or problem was, in terms of why I was actually turning up to appointments, it was really difficult at the time that you’ll even find someone to support that access to care to find treatments specifically for an eating disorder or even identifying as having an eating disorder was too complex. My name is Shannon Calvert, and I’m based in Western Australia, but I work across the eating disorder, mental health and palliative care sector statewide but also on a national level as well. And I guess my main area of expertise is around lived experience, advocacy and engagement.
Sam Ikin 06:03
Community awareness around the existence of eating disorders has increased significantly, and the understanding of those illnesses has evolved. Shannon, who works in the healthcare sector, also has a lived experience with an eating disorder herself.
Shannon Calvert 06:16
Personally, I lived with a severe and enduring eating disorder for, gosh, almost 30 years. So like I said, I’m 45 now. So I think pretty much most of my life was severely impacted by experiencing an eating disorder. And as with most eating disorders, I had the co-occurring and coexisting issues of other mental health challenges such as trauma and anxiety and depression. It certainly didn’t take 30 years for me to recover from an eating disorder. In fact, it was probably the last few years of really supportive interventions that got me to where I am now. I never even thought I’d be in a position to work in the field now. So yes, I had the privilege of getting to where I am now, knowing that there was important conversations that needed to be had.
Sam Ikin 07:00
So glad that you did because you’re still so heavily involved. Can we go back a couple of decades? What was the state of awareness like 20 years ago compared to today?
Shannon Calvert 07:10
I think for me, I think the internal stigma was quite profound. And I think it took a lot of insight and perspective-taking along the way to realise how much I blamed myself for my eating disorder. But I think back in the day, I remember, it was still clear people understood eating disorders to be a choice. We were looking at someone to blame for an eating disorder, whether it was within the family or by something that had happened in a person’s life. It’s not as simple as that, so to speak. It actually isn’t a person’s choice. It’s not someone’s fault, as well. It is just; unfortunately, it has a complex nature to it. And the wonderful opportunity of realising, though, that people can actually recover from eating disorders, and that any eating disorder as well. Whereas back in the day, I think it was too complex, and I think, very difficult for people to want to take responsibility and treating eating disorders now.
Sam Ikin 08:03
If we could only go back in time knowing what we know now. We now know that families and carers play one of the most important roles in a holistic recovery programme.
Claire Middleton 08:12
Families were excluded from the treatment in hospitals. They were treated appallingly. A friend once said to me who’s in the field. She said, “You know, Claire, when someone has an eating disorder, it’s not just the sufferer who has it’s actually the whole family.” And this was before we knew it was genetic, that there was a genetic component to it. And so, for me, to encourage people to listen to me at those early ANZED conferences where I was the only consumer, and I would just stand up constantly and put my hand up constantly and say, “No, it’s actually not like that. No, no, you’re looking at it the wrong way. You’ve got to include the family. Like, you know, no one’s to blame here. But everyone has an opportunity to be part of the recovery.”
Sam Ikin 09:02
In 20 years, we’ve seen some significant changes. One of the most profound is the introduction of residential clinics. For example, there’s Wandi Nerrida on the Gold Coast, and other similar clinics are either operating or in development all around the country.
Claire Middleton 09:16
People just put into hospital programmes like the Royal Melbourne, you know, One North, I think they called it, and it was almost that will make everything so uncomfortable until you eat. And then those kids are put into hospitals on the mother and baby unit. There was no designated eating disorder treatment. And even when people were so sick with anorexia and they needed specialist care, there was none, so they’d go to a medical ward, but no, none of the nurses, let alone the doctors had any specialist training in how to treat these individuals or understand them. Training people who have had a lived experience, training them to be coaches because they, I mean, sure, there are lots of health service professionals now who are specially trained, and have specialised, but just that sharing your journey, in a very healthy way in a positive way that has really changed the theme worldwide, I think. It’s respecting people who’ve suffered. It’s respecting that your journey is going to help others; you’re actually an amazingly important part of the healing of others going forward.
Shannon Calvert 10:31
I needed some critical interventions when it came to medical treatment, as well as mental health treatment. And unfortunately, I was put in a very complex under-resourced public service that didn’t know how to treat eating disorders. So at the time, and I had to believe that they were doing the best with what they had, I guess for them, they felt that the form of intervention that they that they followed was the best way to kind of contain or maintain my eating disorder, but it was probably more traumatic than anything else.
Melissa Keller-Tuberg 11:02
I’m a uni student doing my honours in psychology. I’m a speaker, advocate and writer, and I really like to share my lived experience of mental ill health and eating disorders on research, advocacy projects, and also the design of clinical programmes, really to help ensure that any decision that has been made in the mental health system includes the voices of the communities that they seek to serve.
Sam Ikin 11:28
This is Melissa Kelller-Tuberg. She works as an advocate for mental illness and eating disorders. As a 24-year-old, she doesn’t have two decades of lived experience to share with us, but she has experienced how deficient the system was, even in the past ten years.
Melissa Keller-Tuberg 11:43
I remember the first time that I was seeking care, which thankfully, my family was really supportive, and it was quite early on, but the doctor that I was seeing said, “Oh, this is this is normal for teenage girls to be being restrictive, I suppose, overly aware of their bodies.” And then yeah, then prescribe me medication for stomach ulcer, tablets, because he thought that it was more likely that my eating behaviours were due to some sort of medical reason, rather than a socio-cultural or, or some sort of mental health issue going on.
Sam Ikin 12:22
Now, mill has come up through the ranks quite quickly. And she’s one of the country’s most prominent eating disorder advocates. She has a really good understanding of the way things work, you know, back in the bad old days.
Melissa Keller-Tuberg 12:34
Yeah, in the bad old days, I think that’s an appropriate way to describe it. Yeah, look, I’d say the most insight that I can give about that, given that I’m 24, is what I knew about eating disorders growing up, especially before I developed an eating disorder myself, how its portrayed in the media, and even in some of these documentaries that we used to watch in health classes at school. And it was 100%, always only including emancipated white, upper-middle-class women, was almost voyeuristic and othering. And this strange perspective of almost morbid curiosity for an experience which was outside of the quote-unquote, normal, it was not at all humanising. Not at all, holistic, or person-centred, or any of these other words that we like to aspire to, to show in our care today. I do fit the stereotype of who an eating disorder impacts, and still, it almost felt like I had to prove that I could align with that in order to feel like I deserved care. And so sometimes I reflect on that whole experience, and it just makes me… it really moves me and makes me worried about the state of conversations in the mental health space, especially back then. I mean, if they made me feel that way, how they would make other people feel as well.
Sam Ikin 14:04
Thankfully, the bad old days are well and truly in the rearview mirror. Things have evolved for the better. But what can we learn from those mistakes that we made in the past?
Shannon Calvert 14:14
I think the fact that we have allies out there when it comes to those that work in the professional field, and there’s a lot of people that are really open to whether they’ve experienced an eating disorder or not or even are out there to support people with eating disorders. I think they’re making every effort to change the language and change the conversations at the table so that we, we are more vulnerable than were are more prepared to, to understand more, not only in the professional field but also in the community as well, which is so important.
sam Ikin 14:45
So it sounds like we’re on the right track, at least. But there are still massive challenges that health professionals face.
Shannon Calvert 14:52
I think the challenge with eating disorders is we do identify an eating disorder as a mental illness. However, it does have physical complexities and can impact a person’s physical well being as well. And I think to manage the two, it wasn’t black and white for some specialists to manage. And I think because people needed stronger interventions at times, you know, to get some support medically, as well as mentally, I think people find it was too complex, it was just too hard. Whereas now, I think more sectors are taking ownership, that eating disorders are indeed everybody’s business and that people also have with eating disorders will likely have co-occurring and coexisting issues. So it’s not just something that you don’t just kind of develop an eating disorder, and then get over it, you know, you may have other challenges that come into play. So you need access to sort of wraparound care, whether it’s for your mental or physical health.
Melissa Keller-Tuberg 15:46
If I was to pin that down into one statement, or one thing that could help fix all of that, it would be listening to the voices of people with lived experience. Because so much of the time, these really complex and difficult issues, if you ask and listen to someone who’s really been through this stuff, and has understood their recovery journey, or going through a recovery journey, they can provide so many valuable insights.
Shannon Calvert 16:21
If I take a helicopter view of what’s happened over the past 20 years, things have changed significantly. And I think if we can achieve what we have in 20 years, I can’t wait to see what we can do 20 years ahead of us. And I think the fact that we are bringing eating disorders to the table, and we are continuously advocating that eating disorders are indeed everybody’s business and that everybody has a right to access some form of support out there in the community, I just feel that the more we continue to respectfully use our voices and involve and engage with people with lived experience and that includes consumers that include carers, their families and supports, I think we will do some critical work and make some really important changes as well.
Claire Middleton 17:03
You’ve got to be really encouraged and taught how to improve your self-esteem, and really start to love yourself, and be proud of yourself. And that’s when you find your identity. And, and that is I think when people start to recover, when they start to recognise that they are worthy, they are equal, and they are deserving of living a life like all other people.
Shannon Calvert 17:29
We’re learning something new about eating disorders every day. Most importantly, now, though, I think it is becoming more evident that eating disorders don’t discriminate. And when I say they don’t discriminate by that, I mean, we’re identifying that there are various different types of eating disorders. You know, 20 years ago, I think we were still very familiar with anorexia nervosa and bulimia nervosa, but, you know, now we’re becoming more familiar, understanding their prevalence of eating disorders, such as binge eating disorder, in fact, that’s probably one of the disorders that impacts most Australians or even people around the world, it’s probably one of the most misunderstood. So you know, I think we’re just bringing more of that to light, and we’re starting to talk about the various different types of eating disorders, and the fact that it can impact anybody at any age and stage of their life, but also taking into account that it impacts men, impacts people with different sexual backgrounds, religious backgrounds, and cultural backgrounds as well. I don’t think we have really had those conversations so openly 20 years ago.
Melissa Keller-Tuberg 18:36
We definitely have made a lot of a lot of progress. I always feel like body image concerns and disordered eating or eating disorders is like considered to be some like weirdly specific, or like an added extra on the side of mental health conversations, you know, you’ll go to your GP, you’ll say, I’m struggling with my mental health, and they’ll get you to do a depression and anxiety questionnaire. But I think it’s less common for people to have conversations about body image early on, as just another part of mental health. It’s almost seen as we’ll talk about that when it comes to that or when we can, even sometimes when you look like you’re someone who we should talk to about that is literally everybody with a body has body image. So if you know if you’re going to talk about your overall health and well being it should be a part of the conversation as other mental health factors like depression and anxiety.
Sam Ikin 19:30
There’s no doubt we still have a long way to go, but we do need to acknowledge the progress that we’ve made. Every day we’re getting closer to where we need to be through groups like the National Eating Disorder Collaboration, Eating Disorders Families Australia, the Australian and New Zealand Academy of Eating Disorders, and of course, Butterfly. If you’ve missed any of those, don’t worry; there are links in the show notes. You can check them out when it’s convenient to do so. Focusing in on Butterfly for a second, we’ve seen the creation of the national helpline providing free, confidential, inclusive support and information from trained clinicians seven days a week. There’s a referral database to help you find the right professionals for your recovery team. There’s also support groups and programmes for people in recovery and their carers, and there’s youth programmes designed for people aged 18 to 24. These are just a few of the innovations and services that are already available.
Claire Middleton 20:21
I’m very proud of what Butterfly has become, very proud of how it has just so diverse. I just love the way that it reaches up to every single person, either with a disability or LGBQTI plus. I have loved watching that reach to different ethnicities, to people have a first met in the people of their first nations, everything I love. I love that they’ve taken it so far, and they’re there’s no judgement, just get out there and help anyone who suffers from these hideous illnesses.
Sam Ikin 20:59
It’s clear that eating disorders are complicated, multifaceted illnesses that require a unique and tailored treatment. And we know that people can completely and fully recover from eating disorders. By investing more into prevention, increasing services, reducing obstacles for seeking help, and learning to be accepting of body diversity, we can reduce the likelihood of body dissatisfaction and, as a consequence, reduce the incidence of eating disorders. But it’s possible that treatment and prevention 20 years from now will look completely different to what we see currently.
Shannon Calvert 21:35
One of the things that I am conscious of is we hear these great outcomes, which I’m thrilled about. But we don’t stop there, as we all know that this work needs to continue. And it needs to progress. We do need more access to care, but we also need to capacity for the community. So that community needs those resources as well to say, you know that we can support people with eating disorders, and we don’t necessarily just need to be specialised. I think that the development of further research, and I think this is something that’s continuing and I think needs to continue, especially when it comes to research and eating disorders. I mean, we know that evidence-based treatment is the key element to support somebody towards recovery.
Melissa Keller-Tuberg 22:15
When it comes to improving, say, for example, research questions, I think we need to do more research on experiences of transgender diverse and men with eating disorders. I mean, again, we need to listen to the community. That’s what they’re asking for. If you’re thinking about clinical services, I think we need to reduce weight stigma and weight bias in eating disorder services. And how are we going to do that? Well, we need to understand what are the experiences of people who’ve gone through this and felt that they have their carers impacted by weight bias, like, we need to ask what people are experiencing in order to fix that.
Sam Ikin 22:52
Another thing Mel mentions is the divide between mental health and physical health when really, they’re so deeply intertwined, we shouldn’t be separating them. Rather, we need to concentrate on overall health itself, both mental and physical, all at once.
Melissa Keller-Tuberg 23:07
Good mental health leads to good physical health and vice versa and making unwarranted comments, it just absolutely does not help when it comes to thinking about prevention in the future. What I would like to see is a consistent and cohesive message from public health as well as mental and physical health organisations, which is like advocating for concepts like intuitive eating, and good mental health in order to lead to better outcomes for everyone rather than this, I’m on the mental health side, I’m on the physical health side, and people are getting confused or leading, leading to more fatphobia to be frank.
Sam Ikin 23:51
There are millions of Australians who have at some point been affected by an eating disorder. And that’s not including the multitude of people who go undiagnosed. So while it’s still great that we’re going in the right direction and the sector is receiving funding, there are still things that need to happen to continue moving in the right direction.
Shannon Calvert 24:09
I think we need to capacity build the workforce as well. The healthcare system is incredibly stretched at the moment. I think we need to support GPs. We know that GPs are front and centre when it comes to diagnosing eating disorders and also have, you know, provided that early intervention. And if we can support people to receive earlier intervention, then I think that doesn’t become so complex and provide so much pressure on the sector as well. I think research is critical, and we do have incredible… the news about the Australian Research and Translation Centre for eating disorders starting, which is groundbreaking, and I can’t wait actually to see the work that will come from that.
Sam Ikin 24:47
That absolutely, I’m very much looking forward to that. I’m very happy you said about building capacity for GPs as well because that’s something that of the lived experience people that I speak to so many of them have just got this burning anger of having, you know, their first GP interaction, which was negative. But then again, the people who have run into a GP who has really helped them have just sung their praises and said it was the best thing that’s ever happened. And so turning that experience around and making sure that you know that weighs more in towards the positive than the negative, I think, is a massive step in the right direction.
Shannon Calvert 25:19
So the announcement of the research centre, the grant specifically, was announced earlier this year. And that was actually awarded to the University of Sydney and Inside Out Institute for eating disorders to lead the consortium. So the consortium and itself will be a collective group of top research facilities across Australia. But it’s also having an international cohort that will be involved in that process. But following a very strong lived experience ethos, and by that, I mean that they will integrate lived experience engagement and co-production of the work that they’re doing across all areas of research, even from the governance level with the research centre. So I know that it’s a work in progress at the moment in terms of its development.
Sam Ikin 26:02
All of our guests agreed that more research is essential and that including the voices of lived experience will be the key to better outcomes for everyone affected by eating disorders. But what else does the future hold for eating disorder prevention, diagnosis and care? I asked all of our guests to gaze into their crystal balls and tell me what they saw in the future.
Claire Middleton 26:23
What excites me the most is, I think, the medicine. You know, I think that there will be a cure, which is going to shortcut the recovery. I think so many people are working on it. And whether that’s going to be a medical treatment, or whether it’s going to be intervention directly into the brain, to a part of the brain, or more work in the genetics, you know, I’ve put putting my faith in science. But I think also what’s going to change is that more and more and more people who survive this, want to help other people because there’s this… It’s called the Secret Language of Eating Disorders. That was the title of a book when my kids were sick. And it is a secret language. And when you get well, because you understand that language, all you got to do is communicate that language. Communicate in that way to people who suffer, to encourage them to get well, to encourage them to engage with that multidisciplinary team. And it’s hard. You know, a lot of work is required of the sufferers, but a lot of work is required of the family. But you know, you can get there, and there’s always hope, always, always hope that you will reclaim your life, always. So for the next 120 years, okay, I hope it’s gone. I just hope that this is a treatment like any other chronic, terrible illness that young people get or older people get. I hope it’s; present to your doctor, and they treat it, and you get better. How good would that be?
Shannon Calvert 28:00
I think the more that we learn, the more that we understand about eating disorders and potentially look towards preventing eating disorders. I feel strongly that even the term severe and enduring or long term eating disorder, we think 20 years ahead. I feel confident that people with an extensive history like mine won’t have to say that they lived with an eating disorder for 30 years.
Melissa Keller-Tuberg 28:27
I’d like to see a system which is preventative rather than reactive, adding the resources on to the early intervention and prevention side of things, obviously, without taking away from more acute mental health care, but if we can get in early, and we can give a message that people are deserving and worthy of help early on, I think that will make a big difference. This is gonna sound pretty ballsy, but um, my wish for the future is that the DSM would change. I think the DSM totally fuels eating disorders, particularly with weight categories and the BMI and the phrasing around atypical anorexia. I’m like, “This DSM, it needs to include people with lived experience when they’re writing the new version.” If I could change something in the next 20 years, it would be the DSM because everything flows out of that around no access to services and diagnosis and all this sort of stuff.
Sam Ikin 29:25
I could listen to the insights of these amazing women all day long, but this is where we’re going to have to wrap it up. Unfortunately, if you’re not satisfied, please check out Butterfly’s Next 20 campaign on the website butterfly.org.au. If you’d like to find out more about our amazing guests, all the links that you need are in the show notes, and I’d like to say a huge thank you to Claire Middleton, Shannon Calvert, and Melissa Keller-Tuberg for their incredible input. For direct eating disorders and body image support, the butterfly helpline is there for you. 1 800 33 46 73 or if like me, you remember letters better than numbers, it’s 1 800 ED HOPE. And if you prefer to chat online, you can do that also at butterfly.org.au. That website is also the place to go to access the referral database that we talked about earlier. Butterfly’s compiled a huge list of all the professionals that you might need on your recovery team. They’d also love to hear from any professionals who would like to be listed on that referral database as well. And lastly, if you want to do something to help, I’d like to encourage you to advocate for support and change. Write a letter to your local MP and tell them that this is an issue that you care deeply about. And then encourage your friends who feel the same as you to do the same. And if you want to go even further, you can donate directly to Butterfly again. Go to butterfly.org.au to do that. Butterfly: Let’s Talk is an Ikin Media production for butterfly foundation. It’s produced by Camilla Beckett with lived experience support from Kate Mulray. The host that’s me Sam Ikin. My production assistant is Bronwyn Lisson. Editing and sound engineering is done by our sound magician Brendon Lenahan. To find out more about us you can go to ikinmedia.au. We’ve dropped the com. It’s just ikinmedia.au. I’m Sam Ikin. Thank you so much for your company.