Episode three: Eating disorders with The Butterfly Foundation
“What we’re trying to do at Butterfly in our prevention work is help everyone to feel comfortable in their bodies, accepting of their bodies.”
EPIC is passionate about raising awareness relating to mental health disorders, particularly in young people. We look for ways we can discuss the physical and psychological factors relating to mental illness, signs that young people might be affected by a mental health disorder, and how parents and carers can best support young people to wellness.
The Butterfly Foundation is recognised in Australia as a leading expert in concerns related to eating disorders and self image. This EPIC Conversation features Helen Bird from The Butterfly Foundation to discuss how parents/carers can support their young person affected by an eating or body image disorder.
Madeleine’s top take outs from this conversation:
The Butterfly Foundation helpline is the only designated helpline that supports body image and eating disorders. Together with the Butterfly website, podcasts and awareness campaigns, Butterfly are dedicated to supporting people affected by eating disorders and body image concerns.
Function over form. Look at what the body can do rather that what it looks like.
Never think it’s not serious enough to talk to anyone. Trust your instincts. Reach out for support.
Roberta’s top take outs from this conversation:
Average age for onset of an eating disorder is 12 to 25 years
Boys that mature late are at a higher risk of body dissatisfaction, a key risk factor in the development of eating disorders.
The Butterfly Foundation can help parents navigate more positive social media usage with their teenager.
Q1. Helen, can you please give us a bit of information about The butterfly foundation?
H: Butterfly is Australia's largest national charity for eating disorders and body image concerns. We do lots of different things. We deliver awareness, advocacy and fundraising campaigns. Lots of people know us because of our national helpline. So that's the only designated national helpline that supports body image and eating disorders. And we speak to over 30,000 people through that helpline every year.
We also provide a range of individual and group based programmes for people in recovery, their families, their carers, their loved ones. And last year we opened Wandi Nerida, which is a recovery centre on the Sunshine Coast, which is piloting a really different and innovative model of care here in Australia. We're super excited about that.
The other thing that we really try to do is amplify the voice of the lived experience. That's a really important part of our work we incorporate into overall programmes and services, particularly when we're advocating for things like better treatment, better care and better support.
Q2. Helen, what's your role within The Butterfly Foundation?
H: I've been lucky enough to be at Butterfly for something like eight years now. I look after all the education and prevention work we do out in the community. All of our work in schools, all across Australia, alongside a really small but dedicated team. We've got a long history of working in the prevention space here at Butterfly, we've been operating since about 2006. Our programmes address the risk and protective factors for body dissatisfaction and eating disorders. We provide workshops, presentations, seminars, resources around prevention and early intervention to parents, professionals that work with young people and young people themselves. And in that time, we've reached over 1.5 million young people and trained something like 15,000 professionals and parents, so we've pretty big reach for quite a small team of people.
Q3. The startling statistic that's on The Butterfly Foundation website states that over a million Australians are living with an eating disorder, and less than a quarter of those receive treatment or support. This raises two questions, and one of them is, are young people more likely than adults to be affected with eating disorders?
H: Yes, eating disorders can affect anyone of any age, any ethnicity, any backgrounds. But we do know that the average age of onset for an eating disorder is between the ages of 12 and 25. The way that eating disorders develops is really complex and different for everyone. It's usually a mix of sociological, biological, and physiological, psychosocial factors. And whilst the risk factors transcend all ages, there are several risk factors that are particularly pertinent to young people and the more risk factors you're exposed to, the greater the risk. So for example, we know that a risk factor is puberty.
Young people coping with hormonal changes, and rapidly changing bodies can be particularly hard, and especially for young people that are maturing at a different rate to their peers. For girls, that may be maturing early. And for boys actually, those that mature late, that's a particular risk factor. Bullying and appearance related teasing, and comments, often kind of presented as banter in the playground or, you know, not too harmful. It's actually a really significant risk factor. For an eating disorder, body dissatisfaction, which can lead to an eating disorder.
We did some research amongst people with the lived experience for a project that we were doing. And a lot of them could point back to comments that were made during their primary school years as having a really profound impact on how they felt about their bodies.
The other big one that's really playing into young people as a risk factor is social media. There's lots of research to support the fact that the more time that adolescents spend on social media, particularly those image based platforms, which are about, you know, posting or editing selfies, curating or creating your own kind of lifestyle, the greater the risk of body dissatisfaction. And of course, that's not to say that eating disorders and body dissatisfaction didn't happen before social media, but it's definitely been a game changer, a real kind of rocket fuel to the fire. And I think it's the extent to which ideals are reinforced through social media, whether those ideals are about beauty or bodies, or health or fitness. And the extent to which young people can compare themselves to other people on social media. It's those two things together with the comparison factor and the reinforcement of ideas that really kind of explain why social media can be, you know, so tricky when it comes to body, body image and body dissatisfaction.
EPIC: It's such a minefield, isn't it? Because from a parent's perspective, this generation of parents are the first cohort of parents experiencing children that having social media and not having had it ourselves. And it's, it's really, tricky. I think, schools are struggling, everyone's really struggling. So it also has its good points as well.
H: Absolutely. It's one of the things that we focus a lot on in our work with young people around how to have a positive experience or maintain a positive body image whilst online. And we also guide parents around how they can support social media use in their young person without instilling that fear of missing out, young people have a really strong fear of missing out. So it is about helping them to use it in a way that's supportive rather than triggering or unhelpful.
Q4. Does The Butterfly Foundation have any ideas why maybe a quarter of the people living with an eating disorder, don't receive treatment?
H. There's lots and lots of different reasons why people don't access treatment, I think one of the big things is, as with most mental illnesses, there's a lot of stigma around eating disorders, a lot of misconceptions about what they are and how they present and what they look like. And also really just that low level of awareness.
Butterfly conducted some community insights research back in 2020. And that pointed to really low levels of awareness and stigma when it came to body image concerns and eating disorders. We know that stigma and judgement, really do act, whether that's perceived or real, as barriers for diagnosis and care.
I think the other thing that plays into the issue is that by nature, an eating disorder can be quite secretive illness. It's an illness that works hard to try and isolate somebody from support structures. And many people experiencing an eating disorder don't feel like that they're worthy of support or treatment. And again, they may also be really unsure or just not able to recognise how unwell they are. And there can be a real reluctance sometimes to let go of eating disorder behaviours, because it means losing an aspect of either our habitual behaviours or an aspect of our identity even.
Coupled with that people experiencing eating disorders can often experience low self esteem, and therefore they feel like maybe recovery isn't achievable for them that they haven't achieved success and other aspects of their life and so that maybe that they wouldn't be successful at recovery.
So on top of all those kinds of individual factors, we also know that there is a lack of understanding about the treatment and support services that are available and obviously, Butterfly is working hard to address that. We also know that there is a real lack of capacity within the system. This has been particularly a problem as a result of COVID and persistent lockdowns. There really isn't enough practitioners or treatment providers to cope with the demands.
On top of that, you've got the economic and geographic issues. We have always known that rural and regional areas have really suffered from a dearth of services. Unfortunately, eating disorder treatment is complex, and it can be quite a lengthy process and relapse is common and it's expensive, potentially. So there's many reasons why people aren’t receiving the treatment that they should deserve it.
EPIC: I mean, that explanation is just so fabulous. And it touches on so many of the other things that parents that we come across are struggling with it. And in regards also to things mental health wise and addictions and that the stigma, the awareness, the secretiveness, the not feeling good enough. It's just the way that you put that into words was really great. Thank you for that.
Q5. Eating disorders and negative body image are serious mental health illnesses, are you able to explain how eating disorders and body image concerns are different and how they're related?
H: Well, you're absolutely right, they are different things. But I think most people don't really appreciate the role that body image or supposed body dissatisfaction plays within the development of an eating disorder. And that it's a significant risk factor. So often, people experiencing an eating disorder will say, well, it's not about body image. And then, and I think they mean in that stereotypical sense of everybody being really vain or wanting to, you know, look like a supermodel. But things like trauma, abuse, bullying, dieting, which often do play a role in the development of an eating disorder often means that a person has a poor relationship with their body.
So our body image is essentially about our thoughts and feelings, and attitudes towards our body. And those feelings and behaviours exist on a continuum. On the one hand, we've got people living, thriving in their bodies genuinely feeling good and accepting of their body, eating in a way that's about pleasure and enjoyment, taste, nourishment, and fuel through to sort of more problematic feelings and behaviours through to that disordered space. And then onto a clinical eating disorder. So what we're trying to do at Butterfly in our prevention work is help everyone to kind of feel comfortable in their bodies, accepting of their bodies, although we know that it can be really challenging for lots of people, but generally, to have that positive relationship with eating and physical activity. So yeah, they're different things, but the body image definitely can play a role in the development of an eating disorder or body dissatisfaction.
Q6. So if a young person is experiencing negative body image concerns, how can it affect their everyday life?
H. You often talk to people and they might go, body image, it's just, you know, everyone goes through that everyone, everyone feels rubbish. Well, you know, actually, the problem is, the reality is that weight and worth and appearance are so closely connected in our society, that actually really does lead to really significant challenges for young people. So it impacts and distracts them from their studies, their work, their friendships, and it can lead them to engage in other risky harmful health behaviours, such as early sexual activity, drug use, it can cause them to withdraw from social activities and extracurricular activities. So it's not something that we really need to ignore, because it really can stop young people leaving really the healthy and fulfilling lives.
We know that body dissatisfaction can start young. And we know that it can hold firm really through out adolescence and into our adulthood. So we really do need to kind of, if we want to stop these being lifelong concerns, we really need to kind of address them early. And something like 75% of people who report some level of body dissatisfaction throughout their life engage in behaviours to try and manage that. And we know that when people feel dissatisfied with their body, they tend to really and it can turn to really unhelpful things, like trying to shrink their body or diet or develop muscles or, you know, really unhelpful things. So we need to try and prevent that.
Q7. Is there anything that you feel that parents and carers might be able to do to support their child if you can notice this sort of behaviour?
H: Well, I suppose, the first place to start is well, what does body dissatisfaction really look like in a young person. It can be all sorts of things, but you might see and hear, hear them acting differently. So they might be starting to criticise their body a lot. And articulate that verbally. Or you might notice them continually comparing themselves either to a sibling or a friend or to, you know, an influencer or somebody online or a celebrity. Their social habits might change, they might not want to be leaving the house, they might stop socialising with friends in the same way. They might avoid doing either activities that they previously loved, or they just don't want to try new things anymore. You might notice a lot of body checking. So spending a lot of time looking in the mirror, a lot of time on grooming, fixating on certain aspects of their appearance and viewing parts of their body as flawed. And just maybe obsessing around things like weight, and food or those kinds of things.
I think the important thing is that our message always at Butterfly is do something earlier, rather than later. So have a conversation with your young person. And that can be difficult, but you need to try and explore and seek to understand and come from a place of concern and love. And remain calm, but alert.
And as a parent, you will really want to be role modelling those really positive attitudes and behaviours and be really mindful of the language that you're using around bodies, or weights or food and exercise. And being really accepting of body diversity and appearance. And, of course, lots of parents, we're not immune to all that toxic messaging that from diet culture, either. So we know that lots of parents struggle with this themselves. And so another message at Butterfly is that if you're finding that hard to role model in front of your child, and obviously do your best, nobody's perfect, but if that is a real, something that you would like, help with, definitely to reach out to Butterfly and we can support people around that. And I suppose going back to the young person, if you're if you're seeing that kind of body dissatisfaction continue and be quite sustained, then it really should maybe approach a GP and start having a conversation with a health professional and get some support.
EPIC: Really good advice. In fact, I was on a drive the other day listening to a Butterfly Foundation podcast. And a really good tip that I heard on there was to be able to concentrate on what your body can do, not what it is what it looks like. Wow, that's such a good message.
H: Yeah, function over form. Definitely. Yes. Celebrate all the things your body allows you to do. How it allows you to engage in the world. See it as the vehicle by which you travel through life. And you know, the it's the it's, it's the journey that's important, not what you're travelling in.
EPIC: I really appreciated that. I highly recommend the Butterfly foundation podcast.
Q8. What are some signs that a young person might be might have an eating disorder?
H: It's complex, because eating disorders can present in all different kinds of ways. Some develop slowly, some quickly. And you certainly can't tell necessarily if someone has an eating disorder simply by looking at them. And because eating disorders often present alongside other comorbidities such as depression, anxiety, OCD, Autism Spectrum Disorder, it adds to the complexity of identifying them and also treating them.
It will look different for everyone. But there are some kind of common warning signs. So physiological, psychological behavioural warning signs, so we might see an increased preoccupation around food and eating and body shape and weights, that distorted negative body image. Feeling anxious or irritable around meal times or avoiding voiding mealtimes and not wanting to eat in front of others. Or feeling out of control around foods.
So the kind of signs of binge eating you know, young person that's suddenly been very rigid and rule bound around their eating and seeing foods in very good and bad, you know, using that dichotomous thinking either using food for comfort or punishment you know, self punishment almost and applying some of those perfectionistic or OCD, OCD tendencies that they may have towards their appearance or their physical activity or their eating. You might see evidence of purging activities, so use of laxatives or diuretics or frequent trips to the bathroom after mealtimes. You might see evidence of, excessive amounts of food being eaten. So food wrappers being hidden in bedrooms or rooms or bags. Complete change in eating style.
Suddenly switching to clean eating or veganism that might be veiled as you know, ethical eating, but actually may have some other motivations behind that. Taking a great interest in what's been cooked. So suddenly being in the kitchen and looking at what's going into recipes, and maybe suggesting lots of healthifying or recipes or control over you know, what sort of milk or cream might be going into things.
And then obviously the physical thing. So you may see fluctuations in weights both up and down. Not all eating disorders are about being particularly low weight. There's lots of atypical presentations of eating disorders. Somebody may not necessarily be have to be at a very low body weight to have an eating disorder. Dizziness, faintness, maybe lack of menstruation in teenage girls, or stopping stopping of menstruation in teenage girls. I suppose the big message is, if you're concerned, as a parent, definitely trust your instincts, and learn more and seek advice if you're at all concerned.
Q9. The next question was going to be if the young person is experiencing an eating disorder, how can it affect their everyday life? Would be relatively similar with a with a body image issue?
Yes. So mean, it impacts every aspect of a person's life. And, you know, people with an eating disorder have, or some people with an eating disorders describe it, like living with a bully, a relentless bully, that is super critical, it's really intrusive voice, telling them that they're not good enough, encouraging them to get engaged in their eating disorder behaviour presenting as, as an ally and as a friend. And yet, despite all that, for some people can be really difficult to want to kind of give up. So it's, you know, if you've got a young person, it's going to affect their mood, it's going to affect their energy levels, their ability to concentrate, their, their cognitive function and their learning potential. You might see that their drive for perfectionism is directed towards eating or academic results, their immune system’s probably going to be compromised. They're going to find going to school or participating in everyday life, at variously difficult or difficult at different times. And they're probably going to be experiencing a lot of guilt, because they understand the impact that their behaviour has on the people around them. And yet taking steps to recover the recovery can be really terrifying for a young person or any person.
Q10. So how would we go about supporting them at that stage?
I suppose the level of support or what support is required depends on so many different factors. So their age, their diagnosis, how long they've been experiencing their eating disorder, the sorts of treatment that's available in their area, and what the family can afford or access. And, of course, there's lots of different treatment options available. And it's about finding the right thing that works for your young person. And that actually made it I don't want to trivialise it but it's a bit like finding a hairdresser. So you know, you've got to, you've got to maybe have to try out a few people first before you find somebody that you're really comfortable with.
And I suppose there's a lot of tension in the home potentially when somebody is experiencing an eating disorder, so it's hard to carry on with that normal life. But that's really what you you're trying to trying to do. You're trying to support the treatment process, but carry on with day to day activities and just be that that kind, caring, loving parents, which can be difficult when you're getting not getting necessarily your young person seems like they've disappeared and you can't find them and that they may be you know, highly stressed and difficult to engage with but you've got to get a key going but you know, seeking support for your young person is really critical.
And so you need to be that's got to be your focus making sure that you've got that support in place. And people like Butterfly National Helpline can support families finding local treatment providers and clinicians in their area, either through our helpline or through our online searchable referral database, which is available on the Butterfly website, butterfly.org.au where there’s lots of information, It's a really good place to start if you're not really sure where to begin. And again, the the helpline is a really great place because they will again, help you navigate through the system and the resources that are available.
Q11. And you mentioned it's it's a very, very stressful time for parents and carers and the siblings and the friends and all the loved ones when someone is experiencing someone that they love, experiencing a an eating disorder. So how can they be supported so that they're okay to be able to then support the person who's diagnosed with an eating disorder or has a negative body?
Yeah, it's that old adage, adage, really, isn't it, put your own oxygen mask on first before helping others. And then the problem is, that's really difficult, as a parent, at the best of times, let alone when there is an eating disorder in the family. You often put your own needs aside, but parents often feel really overwhelmed, and that they feel like they're not giving enough time to other family members or siblings or their relationships. And on top of that, they're really worried and concerned for their child who's experienced in the illness.
But I think if you don't take time for yourself, you can't care for others adequately. And what taking time for yourself or caring for yourself, will be different for everybody. And it may be just taking some time out to read that book, go for a walk, listen to the podcast, have you have a hot bath, listen to a meditation, go to yoga, experience or a massage or something like that, whatever works for you, and whatever you can fit in.
And I know that there is a lot of people would really recommend the benefit of peer support. So being supported by other families who either have been through the journey, or are going through the same experience as you. And again, Butterfly helpline can connect you into the support groups that we run for family members. But there's also organisations like eating disorders family Australia, which offer a really more wide range of resources and support groups. And so really encourage people to have a look there as well.
EPIC: Peer support is awesome. It's sort of it helps people who are going through the same thing, share what's happening, and we find that with Epic.
Q12. Is there anything that I've missed you think that we could add?
No, I just, I mean, I think our really biggest message, and then we've people take one thing away from listening to this is that, recovery is possible. But we know that's really aided with early intervention. So that can really reduce the length of illness and the severity of illness. So acting sooner rather than later is better. So never feel like it's not serious enough to go and talk to somebody. I don't think you'd regret regret that if that was the case. But always, you know, trust your instincts as a parent, you generally have a sense of when things are not sitting right. And so reach out for support. And if you need help in talking to your armpit young person and raising concerns with the then butterfly can guide you and having that kind of positive and productive conversation because the really the goal is to keep the communication going with you, your young person till maybe they're ready to acknowledge that there's a problem and they're ready to kind of proceed with support. So don't give up and be persistent and trust your instincts.
Great advice. Thank you so much Helen.
Q13. If people want to connect with the Butterfly Foundation, how can they do that for themselves and for the young person?
Well, the great thing is we do have a really extensive website, so it's butterfly.org.au and on that website, you can find details of how to access our national helpline which offers web chats, email support, and obviously telephone support. That's available 8am to midnight, seven days a week, every day of the year, except national public holidays, and the phone number, if you wanted to ring is 1800 33 46 73. But all the details are on our website. And so I'd encourage people to have explored all the resources and information that's there as a starting point.
Contact Butterfly via their website - https://butterfly.org.au/
Do you have suggestions, comments, questions relating to today’s conversation or have ideas for future episodes. We would love to hear from you. Send EPIC an email
Are you a care giver to a young person. Sign up for our EPIC Updates emails
