Myths about eating disorders

People often came up against misunderstandings about eating disorders from their family, friends, the general public, the media and health professionals. Young people we spoke with described how incorrect ideas about what eating disorders were could make their experience worse:

  • People who had an eating disorder themselves, family and friends sometimes being unable to recognise signs and symptoms of eating disorders.
  • Feeling bad about themselves for not fitting with others’ ideas of what people with eating disorders look like.
  • Being thought of as ‘vain’.
  • Not being taken seriously by family and friends (or by themselves).
  • Finding it difficult to talk to others about their thoughts and feelings.
  • Finding it difficult to get access to services.
  • Not being listened to or being taken seriously by health services.
  • Being wrongly diagnosed.
The following are some of the most common myths young people wanted to clear up:

Myth 1) People with eating disorders are underweight

The most common myth that people talked about was the idea that eating disorders were only about weight and appearance. People had come across unhelpful ideas that people with eating problems were always underweight and obsessed by their appearance; or that people with eating disorders could only be ‘skinny’, ’emotional teenage girls’. Jasmin stressed that eating disorders were first and foremost about coping with emotions and often linked to low self-esteem and depression. She described how she had struggled just as much when she was underweight as she did after she put some weight on, because the underlying issues were the same.

Jasmin’s doctor didn’t understand that even if she didn’t look underweight she was still unwell…

Age at interview 19

Gender Female

Age at diagnosis 17

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I think one misconception that, I have struggled with, because I know that a lot people would think it is that everyone with eating disorders are really underweight. Because at times where I was struggling, when I was like recovering and I had regained weight but I was struggling, but I’d be too worried to talk to people about it because I felt like they’d think I was overreacting or something because I wasn’t underweight. I know one of my teachers, one of my dance teachers who had noticed me; she was the first person to say something about me losing loads of weight. And then I’d, once I’d regained it I then was struggling again but as I, they’d already regained this weight and then she spoke to me, she was like, I don’t understand because, you know, you seem so much better lately, and you look really healthy so I thought you, you know, I thought you were better She just assumed that I was suddenly better and obviously you go into recovery you regain weight but you’re not better for a while there’s a lot to deal with.

I even had a problem with a doctor when, the relapse happened I had to go back to her a couple of times because, you know, I was still waiting and, it was really bothering me but she was like, Well you haven’t lost any weight and you look fine And it was almost as if, you know, she was like you need to deal with it’, and was quite insensitive about the situation just because I looked fine, and it’s like, well I might look fine but it doesn’t mean that I am’, I might not be losing weight. So just the fact that yeah that’s a main one cos it almost made me feel like I need to lose weight and then go back to the doctor for her to take me seriously.

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The idea that eating disorders were about wanting to lose weight, and looking a certain way, made it harder for some people to realise that they might have an eating problem. Maria had always thought that eating disorders affected ‘silly girls who fussed about their appearance’. Neither she nor her family realised at first that she was suffering from an eating disorder. People also said that the focus on weight in eating disorders made it harder for them to talk about their problem. Hannah Z was afraid to go to the doctor’s in case she was judged for not being underweight. Laura described feeling ‘a fake’, despite years of struggle with eating disordered behaviours because she associated eating disorders with ’emaciated’ people.

‘I always had the attitude that people with eating disorders were very skinny, very kind of fragile girls, teenage girls, very emotional about things. But to be honest all my friends that have their eating disorders aren’t the typical stereotypical life-form of what somebody with an eating disorder is.’ Nico

Myth 2) Eating disorders only affect women

The numbers of men with eating disorders are rapidly increasing partly due to increased awareness among support services and men themselves. However, community-based epidemiological studies (such as Adult Psychiatric Morbidity Survey, 2007) suggest that as many as 25% of people with an eating disorder are male (National Institute for Health and Care Excellence – NICE May 2017).

Despite this, people still commonly think of eating disorders as ‘a woman’s illness’, as Andrew put it. People talked about the gender stereotypes of ‘a macho culture’ where men ‘don’t speak’ or ‘seek help’. Craig thought that being diagnosed with an eating disorder might threaten some men’s sense of ‘masculinity’.

Jamie felt that people don’t understand how eating disorders can affect men. He says the media…

Age at interview 19

Gender Male

Age at diagnosis 14

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I find it difficult cos like there are people that don’t even realise, they think, Oh, eating disorders only affect women. That’s, how it is. Like I’ve found, I find it quite offensive like there’s been loads of articles and stuff like that like against photo shopping of women’s photos. I’m like, Yeah but they do it to men to make them muscly and stuff like that. You ain’t gonna stop that, cos like most of the people that complain, quite a lot of them are women. It’s like; they’ll like, Oh well we want to see that. We want to see scantily clad muscly men in magazines. I’m like, Yeah but, that’s like a contradiction, that’s like a double standard for different people, and I’m like, You can’t have that.

Like on a TV programme I watched recently, there was a competition with men in swimming trunks or something, who looked the best one. Like you wouldn’t have women in bikinis would you? No cos that’s just not how they’d do it. They’d say, Oh that that’s offensive, or they’d turn round and say, Oh we’re appealing to a market. I’m like yeah but, So what? You know it’s not right message to give out. It’s just like, I just find it quite frustrating that they think it doesn’t, they don’t think of men with eating disorders as much, they just think, Oh eating disorders, they just think a woman.

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Men often said they had never realised what they had could be an eating disorder. They themselves only associated eating disorders with women, particularly younger girls. Some believed that doctors didn’t take them as seriously or diagnose them as readily as they would do a woman with the same symptoms. Men pointed out that much of the information about eating disorder symptoms could be alienating as it focused on periods, female hormones and fertility (ability to have children).

Through running peer support groups for men, Sam has noticed that men don’t always recognise the…

Age at interview 25

Gender Male

Age at diagnosis 16

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Last year we ran a face to face peer support group in the city, and there were lots of guys that were coming along that wouldn’t label themselves as anorexic or bulimic or binge eating even though when they talked about their behaviours it was exactly anorexic or exactly bulimia. You know and often quite severe, so that kind of makes me think that you know when I think about the e-mails that we get through all the time you know it kind of makes me think that men are aware that something’s going on, but just can’t connect it to you know as an eating disorder. And I think that is partly to do with the lack of awareness obviously but you know I think you know it also shows that you know if men were more aware you know we probably would see a lot more men coming forward and getting help. And that’s the whole point of our awareness raising efforts all the time because we want to see those men get help. Otherwise they will live, you know, lives you know with eating disorders, very isolated, causing significant harm and damage to themselves in lots of different ways and potentially even die from it.

You know so it’s a really serious issue that we really want to sort of, and this is why I think it’s so important that service provision you know is sort of, you know better in the sense that you know gateways to support are easier. So if a man goes to the doctor and they you know, the doctor is aware that yes men do have eating disorders as well, you know they’re not looking at their, you know, you know cos if you look at the diagnostic criteria for anorexia one of the key symptoms is the loss of periods, you know of course, you know what I mean it’s still gender biased in that sense and I think there’s a lot of change that needs to be done on all different fronts really. I think it’s gonna take a bit of time.

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Jamie never had any information about the impact of an eating disorder on men’s health.

Age at interview 19

Gender Male

Age at diagnosis 14

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Have you been given information specifically about men and eating disorders?

No like. I think there’s like a few things, but I’ve never really seen much like, like you hear like the side effects of having an eating disorder on like women. Like they can become infertile and stuff like that but I’ve never seen any for men. So I like went and was like, Look, well what are they for men? Cos like that I could like have a side effect and I wouldn’t know

Like I think, I think I read somewhere that men can become infertile by it, and I’m like, Yeah but no-one tells you that They need to like tell you this could happen, that could happen. Like you can get, I know you can get like osteoporosis which I’ve only seen like written about women, which is obvious it could happen in men as well. So it could lead like some people to think, Oh there’s no side effects for men When there is and it’s just not, I had to like scroll through the whole of the internet trying to find bits of information. Whereas if you try, like side effects for women sort of they all come up and it’s like, Well why haven’t you done this for men? They need this like something this important you need to know.

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Sam believes that if he was a woman, the GP would’ve diagnosed him with bulimia nervosa. His GP…

Age at interview 25

Gender Male

Age at diagnosis 16

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So at eighteen I went to the doctor, I didn’t know the doctor cos I was obviously new to the area, and I spoke to her quite confidently about my, what I was going through, because by then I was very aware and the doctor said to me, , You haven’t got Bulimia, you’re just depressed.

And I’m guessing and I’m probably quite confident in saying that that was probably because you know I was male, you know I didn’t live up to the stereotype of being young and female, and because my, it had sort of had nothing to do with body image or weight or anything like that. I think that might have confused the doctor a little bit you know. It was just purely because you know I couldn’t cope and all that pressure that you know that had just been ebbing away at me, I mean for all those years, you know had obviously built up to that point, and so I was really hopeful that you know I’d get a referral, and I didn’t. Instead they put me on Prozac and you know I did actually get a referral to the counselling, but that would take about a year or two years, I can’t remember now, to get to the top of the list. So I didn’t bother with that.

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David said eating disorders can affect anyone. Information targeted only at women is not helping…

Age at interview 22

Gender Male

Age at diagnosis 19

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Whereas if a guy was to turn around and say that, I do this, I don’t eat. I starve myself Or, I make myself sick And there’s a very real stigma attached to that. So it’s all about, it’s also just about the awareness being there, that actually it’s a real struggle for a lot of people. I don’t think people understand, you know it’s not, it may start out as a choice, you’ve chosen to do it, or go down that route, but you’ve done it for so many reasons that people don’t quite comprehend. And once it becomes a habit I think people forget how much it can control your life. And that is the same for men as well as for women. And just because you’re a man and you’re meant to be strong and that it doesn’t mean that that doesn’t take over your life in the same way that alcohol addiction or gambling addiction, it doesn’t just affect, it doesn’t just affect women it affects men too, if you know if not more so.

Anyone can be affected by anything. I don’t think the awareness is there at all, let alone necessarily the information on what you do or how you go. The only thing that is there just seems to be aimed at the, you know at the teen or the female market. it’s not helping anyone in general.

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Men who had been inpatients had all been the only male on the ward. Rob said it was strange at first but that the ‘similarities [in their experiences] outweighed any differences’ between him and the others. James had his own room but it was hard being under observation by female staff even when going to the toilet or shower.

It was sometimes thought that only particular ‘types’ of men developed eating disorders. Sam noted that eating disorders could affect all men, across age, ethnicity, social class or sexuality.

‘Men of all ages, backgrounds and sexualities can get affected by eating disorders, and we really need to challenge those almost secondary stereotypes. The primary one being about gender, the secondary one is that men with eating disorders are either young or gay and it’s not the case at all. Eating disorders are indiscriminate full stop.’ Sam

Sam, the founder and director of the UK’s only charity for eating disorders in men, ‘Men Get Eating Disorders Too’ described the main aim of the charity being to work towards ‘gender inclusive services and attitudes’ in eating disorders. He called for a ‘2-tier approach’ so that men can seek help ‘without fear or anxiety of not being taken seriously’ and, when they do, health professionals are fully equipped to diagnose eating disorders in men, and men and women have equal access to help and support.

Sam decided to set up the UK’s first charity for eating disorders in men. He describes the…

Age at interview 25

Gender Male

Age at diagnosis 16

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Well it must have been 2008 now. Very early in 2008 I think it might have been January. I was already involved in a project called Experience in Mind, and it was a young people’s and mental health advocacy type group. They delivered training for professionals and created lots of different resources and you know I frequently spoke about my experiences of eating disorders, you know being from the men’s perspective.

And I was always quite surprised by the surprise that I got when I spoke about those experiences from professionals, so I thought, What’s going on here? You know I thought men and eating disorders wasn’t that much of a big a deal. And it kind of bothered me and you know I was involved with lots of projects at that point, I thought it would be quite nice to do my own project, but I had no ideas of quite what I wanted to do and I think one day I just got this idea of thinking, Oh I might get involved with eating disorders charity. I’m not sure who, there must be a men’s charity somewhere. Just assuming it would exist.

And I went on the internet and of course there was nothing. And it kind of sort of bothered me a little bit. I looked on some other sites, you know the eating charity sites and there was men’s pages but it just kind of directed you everywhere else but that there was nothing on their site as it, you know if you were a man, there was you know. Instead it sort of referred you elsewhere. So I thought that well that kind of bothered me. I thought you know if you’re a man, you know, it shouldn’t really matter really if you’re a man or a woman you should be able to get help regardless and that be acknowledged.

So I thought why not set up a site myself. But at the time it was really just intended to be a personal story site, it wasn’t really going to be anything more than that. But of course like any idea it evolves and develops and you end up thinking, Oh let’s have information. Let’s have a forum; let’s have lots of stories from other men; you know, it became it grew and grew and grew that idea. I applied for funding and didn’t get it, so for about a year nothing really happened and then eventually ITV Fixers, just virtually out of nowhere, and told me, I don’t know if you know about ITV Fixers, yeah you do know. So I ended up getting in contact with them, by that point I’d already done a little bit of media told my story so they were quite interested. You know I’d already sort of you know quite major media at that point, Gay Times and something else, it was New Magazine at that point. And they said, Yeah, great, let’s support your project. Let’s get it off the ground sort of thing. And I did a mini documentary with them, which went out on the Meridian Tonight programme, interviewed my Dad about his perspective of having a son, so it kind of really started off just intending to be a website, a media campaign. But it, the day that it launched I gave a radio interview to Five Live, it was quite funny because they actually used it on Radio 1 but I didn’t know anything about it, and that ended up sort of being disseminated throughout the media. We got loads of media requests and it just, for about six months was just constant media with radio interviews and bits of TV and magazines and stuff. And of course more men came forward and they’d sort of tell their stories so the project literally overnight you know kind of exploded.

And then at that point there was talk about should it be registered as a charity. Now I know even though I’d worked for charities, I was employed by a charity I knew nothing about how they were run and I had no intention of setting one up.

And then various other people got on board at that point which became the trustees, so I thought well why don’t I set up the charity and ITV Fixers paid for a consultant to help me to do that, and I had lots of different ideas about how it might develop, by having online support and face to face support groups, to create a training package for professionals, which we have all done now. So you know that was crucial because if we were a registered charity and we had to get funding and so to cut a long story short, you know, it’s happened in quite a short period of time really and you know it feels like a lot longer than it has in one sense, but then you know it only felt like yesterday that I probably thought of the idea.

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Myth 3) Eating disorders are caused by glamorous images of celebrities in the media.

Despite what is often said in the media, developing an eating disorder is never simply about people wanting to look like the celebrities in glossy magazines. However, people felt that media played big role in promoting unrealistic images of what was ‘healthy’ or what a healthy body looked like. Katie said the media commonly showed successful people as being skinny. Emily criticised the media for putting across the message that ‘skinny is better’ through regular features on dieting tips and celebrity bodies. Georgia said that, although the media couldn’t be blamed for people developing an eating disorder, it could add pressure for people to look a certain way. Some also felt that the media portrayed eating disorders as an illness that ‘famous people’ had. Lauren never thought that she, with ‘a normal life style and a good childhood’, could get an eating disorder.

‘I never really think I’ve been the typical person that would get anorexia and I think everyone thinks that like. You think it wouldn’t be you. It’s just these really famous people or something. I don’t think people realise just regular people just get it and it’s so common.’ Hannah Z

Sam pointed out that the media could also have a positive impact. When handled well, the media can help raise awareness of eating disorders and help to raise the profile of the aspects of eating disorders that are not well understood.

Sam describes how, thanks to increased media coverage, more men are coming forward with their…

Age at interview 25

Gender Male

Age at diagnosis 16

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[Awareness of men and eating disorders] it’s been a lot more. I think partly cos I think there’s been a lot more media coverage. I mean there was hardly anything three or four years ago. If you researched the internet you just didn’t get anything at all. Whereas now you know every six months there seems to be a new story that, that seems to emerge in the media, about men and eating disorders. Like last year the mannequins’ debate was I don’t know if you heard about that? That the mannequins were based on 19-year-old-bodies for menswear. And that kind of raised a lot of debate and so there seems to be a little bit more awareness around that, because of those stories that have come out in the press. So it kind of helps us to get our message out there as well. And obviously their message is the same anyway cos obviously what we’re trying to address is the fact that men do have eating disorders and that you know is not unusual, it’s not rare as you might think.

So yeah we’ve definitely seen a change, and I think what also indicates the change is the fact that we getting a lot more men willing to talk about their experiences. Of course you know it’s still very hard for those guys to talk about their experiences, but you know I remember a year ago we had about ten men that were just talking, you know just ten. Now at least we’ve got 40 to 50, men of all ages, and all localities. So that is promising and that shows that men are feeling more willing to talk about those sorts of issues that are very, very personal really. And for anybody that’s difficult, particularly when you you’re stigmatised and not living up to the stereotype people might expect. You know it’s very difficult to sort of talk about that.

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Myth 4) The only types of eating disorders are anorexia nervosa and bulimia nervosa

People we spoke with had experienced anorexia nervosa, bulimia nervosa, Other Specified Feeding and Eating Disorders (OSFED), Binge Eating Disorder (BED), ED-DMT1 (‘Diabulimia) and varying degrees of undiagnosed disordered eating. Many had, and were diagnosed with, more than one type of an eating disorder. The experience of these people changed over time, from bingeing (eating excessive amounts) to restricting (limiting food), for example. Some said that they had found it easier to talk about anorexia nervosa than bulimia nervosa and that there were more services available for people with anorexia.

Suzanne said most people associate eating disorders with anorexia nervosa and bulimia nervosa…

Age at interview 16

Gender Female

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If you said eating disorder to someone, in my experience people think about people starving from Anorexia or a bulimic, bit like sticking their fingers down their throat and vomiting. They don’t really think about the in-between to look at me it’s not obvious that I have an eating disorder. And even if you knew me it’s not obvious, because and I don’t starve myself and I don’t binge. I don’t vomit deliberately. I don’t exercise excessively. I don’t engage in any of the stereotypical behaviours associated with eating disorders, the behaviours that people think that if you have an eating disorder you engage in. And it’s because I think people don’t know that much about eating disorders. If you, if you don’t do this, if you’re not a certain weight or if you don’t make yourself vomit or you don’t starve yourself then, Oh no, you can’t possibly have an eating disorder

it’s in the same way people tend to think that females only have eating disorders, you don’t really think about guys having eating disorders. And it’s just basically misconceptions and lack of information, which means that unless you’re the extreme, then the chances are people aren’t gonna look at you and automatically realise, and even if they do know you the chances are they’re not gonna realise.

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Hannah Z set up a campaign Hungry for Change’ with her friend. Their aim is to dispel myths and…

Age at interview 18

Gender Female

Age at diagnosis 14

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I’ve set up my own campaign called Hungry for Change with my friend and she suffered from anorexia and bulimia so we wanna kind of dispel the myths that surround eating disorders and like concentrate on the fact that they’re mental illnesses and not so much on the physical side of things.

So tell me more about the Hungry for Change campaign. What is it about?

it’s about raising awareness of like all eating disorders and like the less known ones and to also take, to dispel the myths surrounding them and changing people’s opinion of eating disorders because it’s kind of like a taboo subject a lot of the time so we kind of wanted to, we kind of wanted to take control in a positive way and that kind of happened through our campaign.

And what sort of activities do you do?

Well, we’ve set up this Facebook group and we’ve got a website and we get a lot of the people involved in the Facebook group with the campaign. And you know we ask for their opinions of stuff like what we should do next and we’re setting up like fundraisers and stuff like that to raise money to go towards B-eat yeah so we’re very pro-active in that respect.

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Myth 5) Eating disorders only affect young people

It is widely and incorrectly believed that eating disorders only affect young people. Although eating disorders are most commonly diagnosed in teenage years, it is estimated that one third of eating disorder cases become long-term and can last through middle age and beyond.

‘The stereotype is teenage girls, but really it’s not because, because when I was in hospital there was women that were in their sixties there. And you know, there was all different ages, all different backgrounds, races, it didn’t matter.’ Rebekah

Zoe was the youngest patient on the ward. Seeing older patients whose lives had been ruined by…

Age at interview 23

Gender Female

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I was the youngest and in a way, it was quite nice because all of the other patients were quite kind of mummy-ish over me. They sort of cared for me and they were and they were sad to see this young thing, cos this was then twenty years ago.

And that was the thing, you know. My parents, I mean it was tough for my parents cos they would come in and see, you know, forty-year-old women who’ve who were had had anorexia all their lives and had their lives ruined by it and they thought this was, this was gonna be me. And I so it was quite a strange environment for someone quite young and quite new to the illness to be in. It was, yeah, I mean we weren’t messing around anymore. This was the real the real side of eating disorders. And I learned a lot about eating disorders whilst being in there about actually, I, you know, I had this awful disorder and I thought, you know, God, I’ve got a really bad eating disorder But it wasn’t until I was in there that I realised, actually, mine was just, you know, another case of anorexia. It was nothing special. It was nothing particularly bad, well, in terms of how far anorexia goes.

Everyone there had had it all their lives. They were, you know, a lot of them were lower weight probably, I mean I don’t, but I remember thinking, I’m not actually that underweight The sort of things that people got worked up about and upset about were, you know, really minor things and I sort of, because I was new to the illness, the people who’ve had it for a lot longer seem to, their whole world was eating, anorexia. Whereas I still had, you know, I still had friends coming in. I still had a boyfriend. I still had school. I was still working when I was in the hospital. I had all my books in there and I was adamant that I would not fall behind. So I was working all the time.

And these other people, they were just anorexia was their life and it was interesting to see that and to see the real anorexia illness, not this kind of snippet I had experienced. So it was a really interesting time for me. For someone who didn’t know anything about anorexia to be in that environment was very, very odd.

Very, I don’t know how to describe it, it was bizarre. You know, I was just a normal, you know, a few a few months ago I was just a normal sixteen-year-old girl sitting my exams and the next thing I know, I’m in this strange environment. But it was I mean the care was brilliant. It really was. I cannot, the care was brilliant.

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Myth 6) People choose to have an eating disorder to get attention and can ‘snap out of it’

Overall, people felt it was not often understood how serious eating disorders can be. Of all the psychiatric illnesses, anorexia nervosa has the highest mortality (death) rate (BEAT 2018). People felt that they often didn’t get help early enough, because they were unwilling to seek help or because they hadn’t been diagnosed. Some had been accused of ‘attention seeking’ and Rebekah didn’t ask for help because she was worried that she wouldn’t be taken seriously. Sometimes people were only offered treatment when already dangerously ill. Annabelle has lost three of her friends to eating disorders.

‘I think far too often you only get help, the right help is only given when it has got serious.’ Annabelle

Georgia reminds people how important it is to remember that being underweight is just as…

Age at interview 18

Gender Female

Age at diagnosis 15

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I don’t really think people understand it. I think in the media it’s kind of show as people wanting to be thin, and look like models. But I’ve never really found it’s much about that. it’s kind of like the amount the media kind of talks about it because of size zero models and stuff, I think it kind of puts more of a pressure on people to look like that. Whereas that often wasn’t really the problem in the first place, might have just, it probably hasn’t helped but I don’t really think it caused it.

And think personally I’d say like the obesity things by the NHS have affected me more than models cos they’d just kind of be talking about how bad it is and I’d just be like, I’m going to be obese if I don’t do somethin. So like stuff that comes out from the NHS and like you’re taught to kind of believe that, but there’s not really that much that comes out about why it’s bad to be underweight. It just kind of all talks about why it’s bad to be overweight.

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People commonly felt that talking about eating disorders wasn’t easy and some said it was still a ‘taboo’ topic. Eva felt that there was ‘stigma’ around eating disorders meaning that there are negative ideas or judgements about people who have eating disorders. She was careful when and with whom she talked about her experiences. Some said that there was stigma around mental health problems particularly among older people, like their grandparents.

Eva says people don’t understand eating disorders and she is careful who she tells about her…

Age at interview 17

Gender Female

Age at diagnosis 14

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And because there is a lot of stigma attached to it, lots of people are so not understanding, and they think oh you’re an attention seeke and things like that. And I don’t want them to think that of me. So that’s why I’ve not really, because I know declaring it, because I know there’d be stigma attached. So I’ve only really said it to the people I trust.

So you can just focus on doing stuff and being friends rather than going through it?

Yeah. And because like I want people to see me as being normal as well. I mean I think oh I don’t want people to look at me and think, Oh there’s Eva, that anorexic girl I want them to think, Oh there’s Eva, she’s the one that likes fashion She’s a, you know, I don’t want them to see me as that.

I think people might have, I don’t know whether or not my friends from my old school probably thought that of me at times like oh, when it became me and there was nothing else to me, they’d think, Oh Eva the anorexic one They wouldn’t, because I didn’t indulge in any of my other hobbies, they all became non-existent. When I had to give up like doing my martial arts and stuff because I got chilblains and it hurt too much to run on the floor, things like that. But now I’d want people to look at me and think, think of me because of what I like and who I am, not what the anorexia’s made me.

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