Under-diagnosed and poorly treated: EDs in larger bodies

Sarah Cox 00:08

You have a medically enduced eating disorder, and he actually turned around to me and said, “Doctors caused this illness and I, as a doctor, I’m going to step up.”

Fiona Willer 00:18

We’re trying to treat the issue of an eating disorder by telling people to do more of the same. This is not a logical approach. Hurting people trying to heal them, but continuing to hurt them, essentially.

Leah Brennan 00:32

You don’t go to the GP and get told to get younger in order to improve this health outcome.

Melissa Hawkins 00:37

It was missed by I guess, everyone, nobody considered that an eating disorder could be something that was experienced for me, particularly, I think, because of my body size.

Sam Ikin 00:48

There’s this phenomenon I like to call the higher weight paradox. It’s similar to the happiness paradox that Aristotle first wrote about that many others have since. Essentially, it says that the more you strive for happiness, the less happy you end up. There are a whole lot of podcasts dedicated to it. And this isn’t it. But my higher weight paradox goes along similar lines, the more a health professional instructs a patient with an eating disorder to take direct action to lose weight, the worst problem gets. It sounds quite simple, but people who are in a larger body are told to lose weight every single day, regardless of whether or not they’re at risk of an eating disorder. And people who don’t fit the eating disorder stereotype are often invisible when they ask for help. This is Butterfly: Let’s Talk I’m Sam Ikin and thank you for being here.

Leah Brennan 01:41

We have a problem where the the image of somebody who has an eating disorder is somebody who is it’s very thin, often, often young, often female. So that’s sort of the typical image that we see.

Sam Ikin 01:52

This is Professor Leah Brennan. She’s a psychologist and a professor in psychology at Latrobe University.

Leah Brennan 01:58

When people see somebody who fits that stereotype, they automatically think that there may well be an eating disorder at play, whereas we don’t think about eating disorders actually happening across the weight spectrum. And we often people aren’t aware that actually, the prevalence of eating disorders is higher in people who are up higher weight.

Melissa Hawkins 02:17

It was missed by I guess everyone, nobody considered that an eating disorder could be something that was experienced for me, particularly I think, because of my body size. It was more encouraged, I guess, my symptoms. The My name is Melissa Hawkins. So I have a lived experience and an eating disorder and a large body. I’m 28 years old at the moment, and I am a youth counsellor.

Sam Ikin 02:42

Melissa says she had a diagnosable eating disorder from the age of 12, but she didn’t ever consider that it was even a possibility for her for more than a decade.

Melissa Hawkins 02:52

I was actually in a training on eating disorders when I was 23, for my study, I was a social worker, and I remember sitting in the trading room and listening to them describe the symptoms and the behaviours and I was just like mentally ticking them off in my head. And that was like the first time I actually felt like, oh, wait, this could be a thing that’s going on for me. It’s like I’ve heard about eating disorders in the past, but like, it was never kind of like that it was kind of like I guess, like a light bulb moment, then that this could be something going on for me. Early intervention would have been helpful. I think it could have avoided a lot of long term issues for me.

Sam Ikin 03:30

Unfortunately, Melissa’s experience is an isolated, the stigma around being higher in weight leads to criticism of someone’s lifestyle, instead of an investigation into why it’s harder for this person to fit the accepted norms. They also end up believing it’s their fault, and that if they keep trying the things that haven’t worked for them over and over again, eventually one day it will work.

Fiona Willer 03:54

Dieting is so normalised and dieting is what people with eating disorders very commonly do. And so instead of being met with concern response by a GP or any other health professional, really at this point, they’re met with “oh, well, good on you keep going, I guess you know, you that’s, that’s good that you’re doing that because you’re larger bodied,” all of these very, socially, normed kind of narratives come out of health professionals as well. But again, that’s that red flag just walking straight past you.

Sam Ikin 04:24

Dr Fiona Willer is a dietitian and a size inclusive health advocate. She says people who are at the higher end of the weight spectrum are treated differently than people who are not when they go and see a health professional. And there may be valid reasons for that. But the outcome is that people in this category are less likely to seek help.

Fiona Willer 04:43

The mainstream approach for larger bodied people, unfortunately, is still that higher body weight is problematised, rather than being accepted as a unique part of that human being, because as soon as we start messing with what is shape, that means we’re messing with eating and we’re messing with moving in by messing with thinking, and that’s really the core problem.

Sam Ikin 05:04

What’s the effect of this kind of approach?

Fiona Willer 05:08

They don’t go to the doctor. I mean, you don’t go places where you know, you’re going to get shamed, right? And so the effect of weight centrism, particularly in primary care, is that people will delay going to the doctor until they can’t avoid it, you know, the problem that they’ve got, has to be seen, but often that they’ll delay until later than another person might. And then when they’re in at the doctor, they often their weight is blamed for whatever their presenting complaint, whether it’s a sore foot, a sore tummy, tired nurse, you know, the, you need to lose weight is kind of the I-don’t-know-bucket, typically.

Melissa Hawkins 05:46

I avoid it as much as I could, like a lot of other people’s experience, I would go in there for something that was not weight related, such as a common cold, or even just a certain injury and be told to lose weight. You know, that was just the normal for me, so I would avoid medical treatment, unless it was like absolutely necessary. And I still do that, to this day.

Sam Ikin 06:08

Not everybody who’s classified as obese has experienced an eating disorder. But around 90% of the people who are diagnosed with binge eating disorder have experienced obesity. But the people who fit the medical criteria for being obese would never consider that there was a condition beyond their control that had caused it, whether it’s an eating disorder or something else. Instead, they think it’s their fault for not being able to fix it. Meanwhile, the prevalence of eating disorders is increasing in people of all body types, particularly people of a higher weight.

Fiona Willer 06:39

The effects is, particularly for people who believe that their body size is a problem, you know, the government’s telling them, it’s a problem that doctors telling them, it’s a problem, their family might be telling them, it’s a problem. But I really truly believe that it’s a problem, no one has said, “hey, hey, hey, hey, hang on, your body is doing the best it can. And nutrition, nourishment, eating well, living well, being fit for purpose, these things are going to actually, you know, give you the kind of health outcome you desire, rather than chasing numbers down the scale.” So the effect is that people diet harder, essentially, if they believe all of the narratives that are that are weight centric, and dieting, particularly for weight loss because of the extreme negative energy balance that’s required for significant weight loss to occur, those people are running towards malnutrition, essentially. And malnutrition is much worse for you than any of the other chronic diseases that we’re commonly concerned about at a public health kind of level.

Melissa Hawkins 07:41

I was definitely in denial that that was something that was going on for me. And I think particularly, I struggled with my particular diagnosis. I think that that was, yeah, like I said, kind of really difficult to kind of comprehend. And then for health professionals to also not had that understanding or that, you know, I guess that stigma around it as well was really difficult.

Sam Ikin 08:05

So far, it sounds like we’re being quite critical of your average family doctor, but we need to make it clear that there are a growing number of GPs who have seen the evidence firsthand, and have changed how they work. They’ve adopted a size inclusive work ethic. And they’re seeing that this works much better.

Dr Samantha Wyton 08:24

I’ve been a GP for the last five years. I think I need to be really intentional to flag that I’m a safe, inclusive space, and that includes weight inclusive care.

Sam Ikin 08:34

This is Dr Samantha Wyton. She’s a GP who practices in Hobart, Tasmania, and she has a lived experience of an eating disorder herself.

Dr Samantha Wyton 08:43

If you have any patient facing resources or that sort of thing being mindful of stigmatising language. An example of that is the word obesity. I consider that to be a slur actually. So I don’t use that with my patients at all. Sometimes I use it in medical speak, because it’s necessary if I’m talking to other colleagues or that sort of thing. But you know, that’s a commitment that I’ve made to my patients is not to not to talk about that with them, because I think it’s it’s not helpful to refer to them in that way. Referring to obesity as a disease is probably the biggest thing that we’re told in medical training. And I don’t agree that you know, I don’t agree with the word obesity at all but I don’t agree that obesity is a disease. I think we have a wide variety of shapes and sizes, and that is just part of the human condition. And it doesn’t make you diseased. Now you may have some medical conditions for sure that it may be linked with being higher weight potentially, but that doesn’t necessarily mean that the weight itself is a disease.

Sam Ikin 09:45

The risk factors which are generally associated with obesity include high blood pressure, type two diabetes, heart disease, some forms of cancer, and there are others ask your GP I’m sure they’ll be able to tell you.

Dr Samantha Wyton 09:57

We do have evidence that has proven over and over again that there is a strong correlation between being higher weight and certain diseases. But the my argument there is what are we actually going to do about it? And what are the harms of recommending intentional weight loss, which can be significant?

Sam Ikin 10:14

So as a GP, this puts you in a tough situation, right? I mean, how do you handle that?

Dr Samantha Wyton 10:20

How it works for me is I consider weight to be a non modifiable risk factor. So other non modifiable risk factors are things like family history or sex. So if a man came in to see me right, and had no other risk factors, and I, you know, one day I had a man, they were both the same age and I had a woman come in the next console, both looking at their risk of cardiovascular disease, that man would be a higher risk because of his sex, but I’m not going to say go and change your gender, you know, or you can’t even you can’t change your birth sex, you’re still you know, you’re still high risk, whether or not you identify as male or not, because of the hormonal differences from baseline, that’s not something that I can change, you know, in order to modify their risk. And so I consider weight to be the same in the same category there.

Leah Brennan 11:04

I do believe that weight is related to health, perhaps not as strongly as perhaps we’ve been led to believe in the past. And there are a whole range of other factors that can explain that leg, particularly weight stigma. So there is a relationship, but it’s not necessarily a direct relationship from adiposity to to well being. It’s not quite that simple. So that’s sort of how I make sense of it. And I guess the other idea that I really like, is the idea that weight is a non modifiable risk factor. So just like age is a non modifiable risk factor, you don’t go to the GP and get told to get younger, in order to improve this health outcome. The vast majority of health professionals that I work with including GPs are on board with bears, they’re trying to make a positive difference. They’re trying to work well, with the with the patients that they’re working with across the weight spectrum. So I think the intentions are good and there are some excellent GPS and other health professionals doing really great work in this space. But often, they’re individually having to grapple with these two different paradigms, if you like this obesity, medical paradigm around weight, and then the eating disorder and mental health paradigm that has a different understanding. And they’re they’re quite the incompatible, it’s quite hard to pull those two things together. So in most cases, I think intentions are good, people are trying to do the right thing and it’s actually really hard to integrate those two different fields.

Sam Ikin 12:33

The first paradigm Leah’s talking about here is what we’ve already called the traditional or the mainstream approach. If we break it down into its simplest elements, it goes like this weight is highly correlated with health, improving weight will improve health, every individual has the capacity to improve their weight and the best way to do that, is by going on a restrictive diet.

Leah Brennan 12:55

The alternative paradigm, where we hope we’re moving and certainly some professionals are already in this space, is the idea that weight is perhaps not as strongly related to health as what we have traditionally thought. That weight loss is not achievable for the majority of people, and so it’s not really a good strategy for improving health. And actually, that is focusing on health behaviours, and quality of life, and self care, and well being is the pathway to better health, rather than weight loss being this sort of thinking that weight loss is is a pathway to get to those better health outcomes.

Leah Brennan 13:33

You can’t really put those two paradigms together, but their principles I contradictory. And I think that’s a really hard space that we’re in at the minute,

Dr Samantha Wyton 13:40

I have heard from my patients previously, that they’ve gone in for an issue that’s not at all related to their weight, and have come out with a weight loss, a prescription for a weight loss medication or advice regarding, you know, diet and lifestyle or just an assumption that their medical problem, you know, they could have broken their arm or something, and that was solely related to their weight when we know that anyone can trip over and break their arm at any time. And it’s not necessarily related to the weight at all. And so I see that quite a bit.

Sam Ikin 14:09

We hear from a lot of people who say that doctors should be telling patients they need to lose weight because they have the patient’s best interests at heart. But as we’ve already discussed, that’s not necessarily the case. The medical sectors obsession with weight loss is firstly not working. Just look at the National obesity statistics. And secondly, it’s causing actual harm to people who are at risk.

Sarah Cox 14:33

My name is Sarah, I am 34. I live in Queensland. I work in the education field. It started with an anesthesiologist actually I was about to go in for surgery and an anesthesiologist said just before she put me under, “Just so you know your weight so bad, you could die in this and I really should have known about that beforehand. You should really do something about it.” And then I fell asleep for the surgery. Then just medical professional medical professional just telling me basically “You will die,” were the words that you use “if you don’t lose weight.” And that was in my 20s. And that led to basically, as the story went on, I developed anorexia nervosa and required significant support.

Sam Ikin 15:16

You being treated for something eating disorder related?

Sarah Cox 15:19

No, I had never been treated for anything or eating disorder related before.

Sam Ikin 15:24

Do you feel like you were treated differently to everyone else?

Sarah Cox 15:28

Absolutely. The first time. First of all, they, they didn’t care about my numbers, except for my weight. They said, We don’t care that every other lab is healthy, you need to lose weight. I had a lot of pressure from medical personnel telling me “You need to lose weight, you need to lose weight, you need to lose weight.” And then when I started doing it, and I realised that it was getting out of control, I actually went to my GP, I remember very, very clearly going to my GP and saying to them, ” Look, I get dizzy all of the time, when I stand up, I, you know, have had all of these symptoms happening, that are very significant.” And my GP turned around to me and said, “That means the diets working and you should keep doing what you’re doing.” And then proceeded to prescribe me with a weight loss medication. So I saught help a number of times initially, and was basically told, “You can’t have an eating disorder, you are overweight.” I was in hospital referred by my GP because she was concerned about my medical stability, and I literally had a member from the mental health team come down and the words they said was, “We are sending you home, you cannot possibly have an eating disorder because you are overweight, you need to go home and continue to lose weight, like your doctor has told you to.” After the fourth time that I ended up in hospital and they realised our look, all of this bad stuff is happening, she’s having all of these symptoms, we need to admit her, that was when I got the diagnosis, but it was about, I would say 12 to 15 months after I started health seeking, and it was about the ninth or 10th health professional I had seen in order to get the diagnosis that anorexia and even then they were like, “Oh, it’s a typical anorexia, you can’t have real anorexia because your BMI is too high.” You know, I’d had other hospitals send me home after an inpatient medical refeeding with a weight loss plan.

Sam Ikin 17:31

I think we’re starting to get an idea of why eating disorders in people have a higher weight underrecognised and undertreated.

Leah Brennan 17:39

When people fall for weight loss treatment, we are telling them to restrict what they’re eating, exercise more, perhaps limit the types of food, the amount of food, the macronutrients, whatever it might be. So we’re telling them to restrict their eating largely. And then when someone presents for treatment for an eating disorder, we’re telling them to do the opposite. We’re telling them to eat flexibly, and don’t apply these dietary rules, and, you know, in a way that fits with your lifestyle. So really diametrically opposed advice. Depending on the reason you present all the settings.

Fiona Willer 18:17

Usually, on the path towards their eating disorder, there is some weight concern in there. And so if we’re trying to treat the issue of an eating disorder, by telling people to do more of the same, this is not a logical, a logical approach, and like hurting people trying to heal them, but continuing to hurt them, essentially.

Sarah Cox 18:42

I was ready to take my own life. One of the biggest struggles with my treating team was my inability to get the higher level support that I needed, led to me becoming suicidal, because I felt like I would never get better. I was completely hopeless. I was like, “If this is my life, if no one is willing to treat me, and I can’t stop this, and my only other alternative is, you know, gone back to my out, like, what’s the point in being alive?” You know, it was just that real cycle that I couldn’t get out of.

Sam Ikin 19:27

It’s diffcult to work out how big this problem is, because we don’t know how many people who are of a higher weight are experiencing an undiagnosed eating disorder. Finding that out would take a lot of money and a top notch research team, and currently, that’s not being done. What we do know is that

what’s being done right now simply isn’t working. Is it possible that they should at least try and rule out that somebody has an eating disorder before start telling them to lose weight?

Fiona Willer 19:55

Oh yes, they absolutely should. So I think we should clarify to, that although people with binge eating disorder, and of course, there is a distribution here because there are many people with low weights that also would fit the criteria for binge eating disorder. We also have to remember that there are a lot of people in larger bodies in Australia, lots and lots more than half in body size that the government would like to deem as unacceptable. By no means is everyone in a large body have an eating disorder either, so we’re talking about a piece of the population here. And you can’t, as you know, Sam, tell if somebody’s got an ended disorder by looking at the person, no matter what size their body is, so that the issue is really in primary care, particularly so that’s at the GP clinic that GPs don’t tend to want to pick up the signs of an eating disorder, actually, regardless of whether somebody is thinner bodied, or larger bodied, and that’s really the the gatekeeping to eating disorder treatment is is the GP. So yes, they should absolutely be screening everyone for eating disorders, particularly if somebody expresses a concern about their body shape or concern about their eating habits. They’re two red flags that every GP in Australia should have their ears out for.

Sam Ikin 21:15

Sarah’s story does end on a more positive note after she found someone who could see what was going on for her.

Sarah Cox 21:23

One of the psychiatrists that I ended up seeing when I did eventually get help, who is one of Queensland’s best psychologists was very clear and said to me you have a medically enduced eating disorder. And he actually turned around to me and said, “Doctors cause this illness and I as a doctor, I’m going to step up and help you get better.”

Sam Ikin 21:40

Outside of the medical industry, there are also a bunch of societal factors that are preventing people from looking for the help that they need. Now I need to make it clear that I use the word “fat” as value neutral descriptor. It’s a word I used to describe myself among plenty of others like strong, powerful, creative, caring, attractive. I have many adjectives. But we have this fat stereotype, that is someone who is lazy, defective, and has given up on life. And that’s extremely unhelpful. And it’s incorrect.

Leah Brennan 22:14

A lot of the people that I have worked with, over the years have a history of losing a lot of weight, which requires a lot of, of effort, and commitment and motivation, and then ultimately regaining that weight. We know that there are environmental and biological reasons why that happens. But certainly, the vast majority of people I work with have have demonstrated kind of commitment and motivation and capacity to change behaviour. It is a spectrum, it just like there is regardless of body weight in terms of people’s motivation and laziness, or whatever, in terms of whatever it is they’re working towards.

Sam Ikin 22:55

I guess the big question is, how do we fix this broken system, especially when there were so many other broken systems competing for attention? The good news is that our experts think things are beginning to move in the right direction. And there are lots and lots of people who are trying to move it in that direction.

Leah Brennan 23:12

We’re in a really awkward spot where they’re starting to be recognition that the old model isn’t working, is it delivering what is intended to deliver or perhaps even doing harm. There’s starting to be awareness of this new alternate model. But at the moment, we’re still at a spot of what let’s try to straddle the two. And as I said before, they’re really based on often opposing principles. So it’s kind of hard to hold on to the old and bring in the new. It really feels like we’re at a point where we need a paradigm shift in that space. We’re not there yet. What is it that you’re trying to achieve with weight loss? And let’s work to that directly? So is it mobility? So if so, let’s like what works for improving mobility? Let’s do that. Is it improving cholesterol? Okay, let’s what works with improving cholesterol, let’s actually do that. Kind of take weight loss out of the picture and work on the end goal and work on the strategies that we know are going to get people to the end goal.

Melissa Hawkins 24:11

I would wish that they would look at treating the person rather than the weight. So for example, the same type of treatment of someone in a thin body compared to a large body, regardless of our weight. You know, I think that it’s important to have the knowledge and expertise and hopefully you know, if you’re not aware of this stuff to go out and seek extra training around it to make the experience more accessible because I can just imagine so many people who will also have gone through the same thing and being misdiagnosed or discriminated against and it’s just they’re not receiving the level of care they deserve.

Dr Samantha Wyton 24:49

It is not your responsibility to advocate for yourself if you can’t do that. It is our responsibility as physicians to recognise and learn about weight science and weight stigma, and a lot of people don’t do that. And we shouldn’t be putting the work on our patients to be doing this educating for us. If they say, no weight’s really important, and you know, we have to talk about this, and this is my obligation, well maybe they’re not the right doctor for you. And it’s okay not to come back. If you’ve had that experience.

Sarah Cox 25:20

If you are sitting here feeling like you’re hurting yourself, whether physically or mentally, in order to control what you eat, whether it’s by a large amount or a small amount, or you feel like you’re eating is in any way not out of control, find someone that is reputable and knows what they’re talking about. I would suggest using either ANZAED or Butterfly’s, finder, where they have trained eating disorder practitioners. Reach out to them and have a chat because you have nothing to lose by having a chat. And if you have a chat, and you feel like actually that really solved what I was feeling, then great. But if you have a chat, they might help you realise that there’s a lot more going on.

Sam Ikin 26:07

Those referral databases that Sarah was just talking about can be found on the Butterfly Foundation’s website butterfly.org.au or on the website for ANZAED that’s the Australian and New Zealand Academy for Eating Disorders, which is anzaed.org.au. The Butterfly National Helpline is 1 800 ED HOPE. That’s 1 800 33 46 73. It really is the best first step that you can make. Butterfly: Let’s Talk is produced for Butterfly Foundation in partnership with Ikin Media, with the support of Waratah Education Foundation. Our executive producer is Camilla Becket. And as always, please leave us a rating and a comment in the app where you’re listening to this podcast. We’d really appreciate that. I’m Sam Ikin, thank you so much for your company.