How do you know it’s an eating disorder?
It’s the most basic of questions and the one most often asked on the Butterfly Helpline: How do you know it’s an eating disorder?
“If you’re even considering that there might be an eating disorder going on,” says Dr. Simon Wilksch, senior eating disorders research fellow at Flinders University, “it’s likely there’s something happening that’s worth checking out.”
Why? The problem is that a key feature of an eating disorder is that the person experiencing it often hides their condition and doesn’t see it as a treatable issue. Meanwhile, left undiagnosed and untreated, an eating disorder can lead to serious and long-lasting physical, psychological, and social consequences.
Matthew knew little about eating disorders, so when his daughter began restricting her diet and increasing her exercising, at first, he believed her reassurances that she was OK. It was only when she had to be hospitalised for malnutrition that he and the family were galvanised into action.
Jane couldn’t relate to the typical symptoms, yet her eating disorder was ruining her life. When she finally broke down exhausted by years of distress and behaviours she got the help that she needed and fully recovered.
The good news is that there are resources that outline the signs, symptoms, and risks, and screening tools for frontline health professionals. First, listen to our new podcast to learn more about what is – or isn’t – an eating disorder.
Simon Wilksch 00:05
If you’re even considering that there might be an eating disorder going on, to me, that indicates it’s highly likely that there’s something happening that is worth getting checked out.
Jane Sullivan 00:14
I learned about eating disorders in a high school health class. There is anorexia and bulimia, but I couldn’t recognise myself in those, because I was larger, and had such terrible body image and self esteem issues that it didn’t really apply to me. It wasn’t until I was towards the end of university and so psychologically unwell and physically unwell at that stage that I actually went, no, no, I really am sick and, and I can say, I think I have an eating disorder.
Matthew Chun 00:55
We sort of looked at it as being well, she’s trying to be healthy, we sort of understand that. And again, we didn’t worry too much about it. Again, hindsight’s a wonderful thing, when you look back, you can you can sort of see the early signs.
Sam Ikin 01:07
It’s one of the most basic questions that people ask, “How do you know if it’s an eating disorder?” And that’s a pretty good question. So we’re going to answer it. This is Butterfly: Let’s Talk from your friends at Butterfly, Australia’s national voice for body image issues and eating disorders. And this is the first episode of our third season. And I’m really glad that you’re here for this.
Simon Wilksch 01:33
I think the main word to think about here is how much change is going on from how the person was beforehand. So you’re looking at changes across sort of behavioural, physical and psychological areas.
Sam Ikin 01:46
So let’s go through what we already know. Eating disorders have serious mental illnesses, people who suffer from them experience extreme emotions about food eating or their body, sometimes all at once. And these emotions often lead to extreme behaviours. There are different types of eating disorders, with different symptoms, but they’re all similarly driven by mental health issues. For someone who’s not an expert, they can be really difficult to diagnose. Experts usually look at three areas when they want to see if somebody has an eating disorder. Those are behavioural changes, psychological conditions, and physical changes. And so what does that all mean in practice? Well, let’s go ask an Expert.
Simon Wilksch 02:27
My name is Dr. Simon Wilksch. I am a clinical psychologist and clinic director of an eating disorder treatment service in Adelaide. I also have a research role at Flinders University where I conduct research looking at how we can prevent or reduce the risk of eating disorders, both in schools and online as well.
Sam Ikin 02:46
How do you know if something’s an eating disorder, or if you’re just you know, very keen on nutrition.
Simon Wilksch 02:51
One of the key features is how much is the person’s self worth determined by their control over food, and their weight and how they look basically. So if that has come to be a really important part of their life, that’s to me what kind of pushes this into more eating disorder territory, rather than just some changes to food and exercise behaviours.
Sam Ikin 03:14
As a society, I think our understanding of what an eating disorder is and what it looks like, it’s starting to evolve and change, because we’re starting to realise that it’s not just bulimia and anorexia, we’ve got all of these other diagnoses and in fact, binge eating disorder, from what I understand, is far more prevalent than some of the other diagnoses that are out there. What the known risks, like what puts somebody at risk of an eating disorder, and I guess, in a lot of cases, it might not be what you think.
Simon Wilksch 03:44
This is one of the interesting parts of the field. There’s been over 30 different risk factors found for eating disorders in terms of trying to prevent eating disorders, it’s working out what risk factors do you target. And there are some that fall under, you know, the kind of genetic area, family history of anxiety, depression, eating disorder symptoms, that risk factor, there’s more temperament or personality risk factors. So low self esteem, impulsivity, anxiety, those kinds of things. There’s what we call sociocultural risk factors. So having a lot of exposure to media content, social media now is increasingly being found to be associated with disordered eating, having experiences with being bullied about appearance, perfectionism as well is a really common sort of temperament that you see in someone who will go on to develop these problems. So I guess one of the challenges here is there’s no one neat, definite risk factor that causes this it’s a whole raft of different things. In terms of behavioural changes we’d be looking at, you know, is there restriction around food is there cutting certain foods out counting calories, avoiding eating after certain times? Sometimes they can be binge eating, but I think something that really is key here is the level of rigidity around the behaviours that is going on. If someone is starting to exercise a lot more, but they for whatever reason, they’ve got something that interferes with when they’d normally exercise, if that really bothers them, and causes a lot of distress and so on, it’s pushing us more down the path that this might be a clinical concern, this might actually be really occupying a lot of their life.
Jane Sullivan 05:17
I remember from a really young age, like some of my earliest memories being about being really, really dissatisfied with how my body looked. And over my childhood, that sort of solidified until when I was towards the end of primary school, I was completely sure that I was, you know, a hideous kind of bog monster thing. And I started partaking in behaviours that I thought would solve that. Hi, my name is Jane, and I have a lived experience with an eating disorder.
Sam Ikin 05:59
How did the eating disorder begin? What are your earliest memories of it?
Jane Sullivan 06:04
I had a pretty turbulent childhood. And I had a lot of adverse childhood experiences, which included a lot of negative focus from adults in my life, about my body and how I looked and that sort of thing I started restricting from when I was in the end of primary school. And by the time I was sort of towards the middle of high school had a fully fledged restrictive eating disorder. And that lasted for well over 10 years.
Sam Ikin 06:37
Did you know you had an eating disorder at the time?
Jane Sullivan 06:41
No, as a little child, I had no idea that this, you know, would have a name or anything like that. I think I learned about eating disorders in a high school health class. At the time, that was that there is anorexia and bulimia, and not what I now know, is a big spectrum of different behaviours and experiences. But I couldn’t recognise myself in those. And I was still in the mindset, though, that I was, you know, ugly and gross. And that even though I could recognise myself in those descriptions, that because I was larger, and had such terrible body image and self esteem issues that it didn’t really apply to me.
Simon Wilksch 07:32
Unfortunately, one of the key features of an eating disorder is that the person who has the eating disorder does not often see it as a serious problem. They often sort of feel like, no, there’s other people out there with the supplies much this is much more serious for them than what it is for me.
Sam Ikin 07:46
Shame and stigmatisation play a massive role in the diagnosis process. When I first went to see someone more than a decade ago, my first instinct was to lie about everything, because that’s what I’d done for as long as I could remember, because I was ashamed of it. It’s not uncommon for people to try to hide it, they might deny that they’re struggling and go to massive lengths to try to hide their behaviours. Others might simply not be aware that there’s anything wrong in the first place. This all makes the job of the carer or the health expert who’s trying to make the diagnosis all the more difficult.
Matthew Chun 08:18
My wife and I have been a carer of our, at the time, 14 year old daughter, who’s now 17, who was diagnosed with anorexia nervosa in mid 2020. My name is Matthew, I’m a father of four kids. Mimi is her name, she has always been a really happy and caring and sensitive girl, little bit shy, suffered from a little bit of anxiety. But, you know, really has been a pretty easy child, all the way through. The big thing that changed for her was COVID. So when COVID hit the things that she loved the most was sport. So that stopped. And then probably the other, she’s quite social, so missing, I suppose her social interaction, and then going to screens and doing it all through zoom and teams and all those things. She just became very introverted, and found it really challenging became really anxious. And it was that that really triggered as far as we can say. I’m sure there are other things that combined to it, but that was a trigger for her to, I suppose start doing things a bit differently, which then led to her being diagnosed with anorexia.
Sam Ikin 09:39
Denying the illness exists can be a problem, but it’s also a clear symptom of the disorder in the first place. It’s also something that the sufferer hasn’t necessarily chosen to do. It’s more of a compulsion. It’s part of the problem.
Matthew Chun 09:53
She completely denied she had many sorta she just said it was you know, she might have taken the exercise too far. So she right not to not to do as much exercise when she came home, she told us that she didn’t want to go back to that place hated all over the hospital food and the environment and all those things. And so we thought, ah, you know, she’ll be fine. It was just a little, just went off the rails a little bit, you know, there’s no real deep issues here. In hindsight, we were a little bit, again, naive, we trusted her. So we trusted her that, you know, she was eating whilst we were observing. We weren’t vigilant, I suppose. So we might be there on my take a phone call, we might look away and look back and there was finished and just assume she had eaten it.
Sam Ikin 10:39
Did she accept that she had a problem?
Matthew Chun 10:41
No, she was convinced she didn’t have a problem. And we were over reacting. She then started to be really starting to be a bit more picky about food. So started cut out sugar, started cut out red meat. And again, we sort of looked at it as being well, she’s trying to be healthy, we sort of understand that. And again, we didn’t worry too much about it. Again, hindsight to wonderful thing, when you look back, you can you can sort of see the early signs. But these were the early signs. And one of the reasons I’m doing this podcast, is to try and help other parents or carers who maybe face the same sorts of things, because I think, if we had picked it up early, then our journey may not have been as torturous and as long.
Sam Ikin 11:25
Well, I’m not a fan of cliches. But the old cliche An ounce of prevention is better than a tonne of cure is true when it comes to all mental health conditions, especially eating disorders. Once a patient ticks off all the diagnostic criteria, that condition can be much harder to treat. Simon recommends calling the Butterfly Helpline, and using online tools provided by Butterfly or the National Eating Disorder Collaboration. They’re a great place to start. He’s also a big proponent of the specially designed questionnaires that can give an indication of whether someone’s likely to be experiencing an eating disorder. There are a lot like the questionnaires that your GP will ask you to fill out if you’re testing for anxiety or depression.
Simon Wilksch 12:06
That’s probably the most highly regarded tool in the field. So the use of that, even though that might seem like a bit of paperwork to someone going to see the GP. As you mentioned, Sam, that is the pathway for most people to getting a referral under an eating disorder plan, which allows someone up to 40 Psychology sessions in a year and up to 20 dietetics sessions. So the benefit of that is that it’s a it’s a very useful tool for the health professionals to know what the symptoms look like and for, you know, the GP to then refer to a psychologist or mental health clinician.
Sam Ikin 12:38
The big indicators are things like extreme changes or fluctuation in weight, unexplained food intolerances, fatigue, low immunity, among other things. But that can also be behavioural things like rigid restriction and obsessive rituals around eating or avoiding social situations that could involve food.
Simon Wilksch 12:59
You will see some people start to avoid socialising trying to avoid being around situations with food. We can see changes of course in, in sort of weight in people feeling the cold, more changes to menstrual cycle, poor sleep, a whole range of physical changes.
Jane Sullivan 13:17
When I was in high school, I didn’t want to go and like, go off to school and have hot chips with my friends. That was absolutely not happening. I didn’t eat in front of anyone for probably five years. I didn’t date because I felt like firstly, I was so hideous that there was no point trying. And also that it would interrupt the disease that I was like committing my life to at that point. And then when I tried to form relationships, like friendships or anything like that, make connections with people inevitably, food comes up and I had to put walls up between me and other people because because if they knew too much, they might try and stop me and I felt like it was absolutely critical that I be able to do these awful things to myself. For me, the hardest thing about having an eating disorder was probably not how sick it made me although it made me incredibly sick. It was that it was like I had a secret second life that I couldn’t let anyone in on for years at a time. It feels like all I thought about and all I did was worry about food and worry about my body. I knew it wasn’t normal, and I knew that it If people knew exactly what I was doing, they’d probably get in the way of it. And so secrecy became a huge part of my life. And it got in the way of relationships, like with my family, with my friends, and it was really my life destroying.
Sam Ikin 15:21
We have completely different diagnoses but I relate to so much of what you’re saying. And I think, you know, a lot of people listening probably will as well. Can you take us through what finally led you to get diagnosed? And was it something that you tried to avoid?
Jane Sullivan 15:35
I was getting treated after having just this complete psychological meltdown, while I was trying to do my honours degree, by my GP. And I started to realise that my treatment for my depression wasn’t going anywhere, because I was struggling to regulate my mood, because I was, like, hungry all the time. I think everyone’s been hangry before. And I came to this realisation that my hanger was, was in the way of trying to reclaim my life from this, like, mental breakdown I’d had. And I went to my GP and I thought I was being so clever. I was like, I’m just wondering if someone had an eating disorder, like not me, but if someone had an eating disorder, could they get treatment for it? And my GP was like, we can get treatment for your eating disorder. I was like, okay. But once that was like, broken down for me, that barrier and I was like talking about it, suddenly, it for me, was a lot easier. Once I had the words and I was able to say them out loud.
Matthew Chun 17:04
I just thought it was the furthest thing that could happen to her. So we took it to a psychologist, basically the same thing, we then ended up taking it to a paediatrician. I then said, Look, she’s ridiculously malnourished, you need to take her hospital. And we took her to hospital and they admitted her straightaway, her heart rate was really low. That was when I suppose we knew that we had an issue. And we knew that there was an eating disorder.
Sam Ikin 17:33
But you knew that she did?
Matthew Chun 17:34
Not really, we thought, you know, she’d been shocked out of that experience. When we came home, we thought she’d be fine, because she didn’t want to go back there again, she’ll eat and she’ll recover. That was, again, naive thinking. We’d see her eat and thinking that that she was eating, but she was good at covering up. So whether it was going down the sleeves, you know, a whole range of different actions she was able to manipulate. And then we had weekly visits back to various different doctors and paediatricians and she wasn’t putting on any weight, so they’re getting really concerned. We became obviously significantly more aware and alert to what was happening, we became much more vigilant. But as we became more vigilant, she became more determined to not effectively.
Sam Ikin 18:22
And so this was just a couple of years ago?
Matthew Chun 18:23
Yeah, it went from March 2020 through to December 21.
Sam Ikin 18:29
And can I ask, How is she now? Is she any closer to being on the road recovery?
Matthew Chun 18:33
She’s thriving? She’s a different person.
Sam Ikin 18:36
What was it what led her to engage in the recovery process?
Matthew Chun 18:40
So I think every journey is different, every case is specific. So I don’t want anyone to think that this is a solution. But it worked for us. So I’ll just share it. So we decided to just after 18 months of constantly, you know, basically, we didn’t leave her alone for any minute of any day, since you know, me 2020, basically. So when she was in hospital, or she was home with us, and one of us, my wife and myself, would be with her virtually every minute of every day, because we’ve lost trust in here. And if we weren’t with her, she would either be exercising or she wouldn’t be eating. So we would we would need to be around her and just to manage her her mental state. So in this December 2021, when things were lost, we decided to give her a week of independence and a bit because we were just completely exhausted, to be honest. And we thought we had to try something different. We said well, why don’t we just give her a week and see how it goes and just give her some freedom? Because she’s completely distraught, and we were completely destroyed. That week, whilst she ate minimal food, but she did eat. So that was a tick. She’d didn’t lose enough weight to check back into hospital. So we then let her do it the second week. She was saying that she really wanted to be home for Christmas, because she wasn’t home for Christmas, the previous one. So that gave her a big incentive to eat a bit more. And we said as long as you keep eating, and as long as your wife doesn’t, I suppose reduce, we won’t take you back to hospital. And then as each week went on, we got to Christmas, January, and it just got stronger and stronger and stronger. And now it’s like a distant memory, she’s playing sport, she’s really happy, she’s back at school. She’s a different person.
Sam Ikin 20:34
So by just taking a step back, and letting her handle it herself?
Matthew Chun 20:40
Sam Ikin 20:44
The good news is that once the barriers have been broken down, and you’ve accepted the diagnosis, you can start working on getting better. Now, I’m not saying that’s the easy part by any means. But if you never start, it’ll never happen. In previous series, we’ve heard stories from people who’ve lived with an undiagnosed eating disorder for years or even decades, despite seeing doctors and other health experts. The good news is that the tools that are being used to help with diagnosis are getting better and better.
Simon Wilksch 21:11
But essentially, we at least just need to ask a few questions of people when they’re presenting. And so some of the some of the measures that have been found to be useful, include items like, would you say that food dominates your life? Do you believe yourself to be fat? When others say you’re too thin? Do you worry have lost control over how much you eat? And often, it’s a nice way to do it to just ask, you know, start off with how much sleep you’re getting on a typical night. And then what are you eating, when you first get up and almost ease into it a bit more, rather than jumping into those really sort of clear cut clinical questions. I’d encourage people to have a look at the National Eating Disorder Collaboration website. Butterfly, of course, has useful content on this. So go into that appointment with your GP, already armed with some information, and I think that will help it to go as well as possible.
Sam Ikin 21:59
Another thing that can get in the way of a diagnosis is when people don’t look like they have an eating disorder, at least not in the stereotypical kind of way.
Jane Sullivan 22:08
Everyone has to have a relationship with food. You don’t get a choice about that. Everyone on this planet has to have a relationship with food. And everyone has self image, body image, self esteem, that kind of thing. And maybe it’s something you don’t think about a lot. Or you could be on the far end of the spectrum like I was, and it’s a complete obsession, but it’s something we all have to do. But that’s one part of it. The other part is, is that as someone who is in a larger body, recovery was, at times really kind of traumatic. I remember, I was living in a regional town at that point. And my doctor couldn’t find a psychologist who specialised in eating disorders that she believed to would that she would trust to treat someone in a larger body and not re traumatise me. And I remember trying to get a referral to clinic. And they wouldn’t accept my referral because I was not within their BMI range. They had a range of BMI is that they would accept, which meant that people who were too large or too small, couldn’t get treatment from this clinic. And moments like that were absolutely devastating. And going from feeling like I couldn’t have this disorder, because of how I looked to again, the complete opposite of having to advocate for myself. I’m going no, no, I I really am very sick. On the same exact issue on the issue of how my body looks was so bizarre, and these were weeks apart. Yeah, that was awful.
Sam Ikin 24:12
That sounds like it would have been a horrendous experience.
Jane Sullivan 24:15
Yeah, it was. It was like the only word I can say for it is traumatic. Yeah. We know that. That having an eating disorder, and any kind of eating disorder or disordered eating, when you’re in a larger body is dangerous and can be life threatening. It doesn’t matter if you’re in that, that group of people, that’s maybe what you imagined when you first think of someone who has a serious eating disorder. No, it’s dangerous for anyone who has one. I couldn’t access treatment. It was horrible. And this is only a few years ago.
Sam Ikin 24:53
The system has got a long way to go even though we’re you know, in terms of treatment and acceptance. We seem to have come a long way. Would you agree with that?
Jane Sullivan 25:02
Yeah, I do absolutely. Something that came up at an event I went to recently was that the sort of less complex mental health conditions like mild to moderate depression and anxiety are really, really accepted now. I don’t think that it’s difficult to say I have, you know, mild to moderately severe of either of those conditions. When you start talking about severe depression or anxiety, or more complex mental health conditions, like eating disorders, or I also have PTSD and depression, were more back like we were 10 or 15 years ago talking about anxiety and depression. Which is, is shit, I would, I would like, I would like to be able to talk about these which are at their core, just medical conditions, without having to worry about shame and stigma.
Sam Ikin 26:07
Things like starting a strict diet or an exercise routine can be risk factors, but they don’t necessarily mean that somebody has an eating disorder. So let’s turn it around. How do we know if it’s not an eating disorder? How do we know that our friend or loved one is just on a diet or counting calories, say for health reasons. According to Simon, it comes down to the level of rigidity that the person has about these behaviours, and how much their actions occupy their thinking and their everyday lives.
Simon Wilksch 26:35
Say someone is going through a phase of being on a certain diet, if they, if they’re kind of going through that they’re doing it for health reasons, or they’re doing it, you know, just to improve their well being overall, but it is not occupying all of their thinking, not having a big impact on how they feel about themselves as a person, not stopping them from living their lives normally, then, then that sounds to me, like less risk of an eating disorder. I would say if you’re concerned at all, it’s probably an indicator that there actually is something going on because I, as I said, I tend to see people really almost downplay their symptoms or feel like there’s not anything important happening here. And that’s that’s not the case. If you’re even considering that there might be an eating disorder going on. To me, that indicates it’s highly likely that there’s something happening that that is worth getting checked out, and luckily receiving some help for.
Sam Ikin 27:26
We’re nearly out of time for this episode. So let’s throw it open to our guests. What advice would they have for someone who’s unsure if they or a loved one have a problem.
Simon Wilksch 27:36
The only other comment I would make is that if if you have a loved one that you are concerned about, I would encourage you to trust your gut instinct and gently raise this with them. Pick a good moment when, you know, they seem to be in a calmer mood, and there’s nobody else around I’d encourage you to speak in terms of “I” statements rather than “you” statements. So that’s things like “I’ve noticed lately,” or, you know, “I’m feeling really concerned that you, you might be doing it a bit tough at the moment,” rather than you statements which can be perceived as kind of being blamed. I’d keep in mind that no one ever chooses to develop an eating disorder, no one ever wakes up and thinks today I’m going to get sick with an eating disorder. So we need to, we need to keep that level of compassion and empathy very high. But again, if you have a concern, if you are concerned about a loved one, speak to them, speak to them sooner rather than later offer to support them, offer to go with them to the GP and and let’s get the process started of getting help.
Jane Sullivan 28:36
My advice for someone who has an eating disorder or thinks that they might have an eating disorder is that the journey is not easy, but it is worth it. I had several relapses and they would frightening every time they will probably more frightening than the first time I you know, had developed my eating disorder. But my life is awesome. Right now, I haven’t had a relapse in years. I’m getting married soon. I’ve got a partner which I like. As I said earlier, thought for years and years was absolutely out of my reach. I’m holding down a job. I’m not like sick and depressed and malnourished. You can do it, it is worth it.
Matthew Chun 29:28
One of the first reactions you have when your child is starving themselves and you become really frightened that you know it could lead to a permanent issue with their health or they could die, etc. Then you become really frustrated. And you say you can’t just say what you’re doing to yourself and and I think what we learned is that’s the worst reaction because it doubles down on their self esteem. And they feel that they’re not worth anything. So they have this low self esteem. You say, Why are you doing this? Don’t you see what you’re doing to us? Don’t you see what you’re doing to your family, that just increases the anxiety. So trying to flip that around and show them unconditional love through this journey, which at times can be really hard. But I think that’s another really important component.
Simon Wilksch 30:15
Because I really want people to know that recovery is the norm like that is what we’re shooting for. When I meet a patient, that’s what we’re working towards, and I’m yet to meet a person that I didn’t think could recover from an eating disorder. It is absolutely possible to get the help that you need and to be free from this.
Sam Ikin 30:33
I’d like to thank our expert for this episode Dr. Simon Wilksch. I’d also like to thank Matthew and Jane for being so open and talking about stuff most of us don’t really want to talk about. If you think you need support with an eating disorder of body image, the Butterfly Helpline that we mentioned in this episode, the number is 1 800 334 673 Or if you prefer letters, it’s 1 800 E D HOPE. For online resources go to butterfly.org.au or nedc.com.au That’s the website for the National Eating Disorder Collaboration. Butterfly: Let’s Talk is an Ikin Media production in partnership with Butterfly Foundation. It’s produced by Camilla Becket with lived experience support from Kate Mulay. I’m Sam Ikin your host. My production assistant is Bronwyn Lisson. Editing and sound engineering is done by DJ extraordinaire Brendon Lenahan. And to find out more about us you can go to ikinmedia.au. I’m Sam Ikin. Thank you so much for your company.