The difficulties of being a man with an eating disorder

The idea of the stereotypical person with an eating disorder being a thin middle class white girl can be damaging for those seeking help who don’t fit that narrow mould.

Even though males make up roughly 25% of those affected by them, men and boys are often shunted to the wayside when it comes to conversations around eating disorders.

James Downs, 31, unfortunately had to deal with extra societal issues that came as a result of being a male with eating disorders, as well as the disorders themselves.

He says it’s isolating that, in the years he’s been getting help from eating disorder services, he’s seen one other male patient, and has never been treated by a male member of staff.

He tells ‘I think often men with eating disorders end up in a niche place.

‘It’s often not centre stage, and needs to be sometimes, because we have this stereotype that doesn’t really help anybody.’

He adds: ‘If you have anorexia, then you become the opposite of what society says is masculine, and that can be really difficult for people.’

James, who lives in Cambridge, was diagnosed with anorexia when he was 15, and is currently in the process of recovering from bulimia.

He was first diagnosed with OCD and depression when he was around 14, after having struggled ‘for quite a long time’.

James says: ‘I’d always stood out for how I looked because I had puberty really young. I physically changed before everybody else did, and I had quite a lot of bullying based on my appearance.

‘I was really tall, lanky, had very long hair, glasses – geeky. I think that told me appearance was really important. That in order to fit in, you have to look acceptable, and I thought I’d looked hideous.

‘So there’s quite a lot of body dysmorphia involved in that. I would spend a very long time washing and getting ready for things – it really impacted my quality of life and my ability to even go to school in the end.’

Unfortunately, when he did start trying to get help for his depression and OCD, at first things got worse instead of better.

He says: ‘I was told “You’ll be able to sort that out really quick because you’re really bright.”

‘And “You’ve got X number of sessions, and then you’ll be fixed and off you go.”

‘Actually for me, it’s much more than just having faulty thoughts. It was about how I felt in my body.

‘It was all about emotional things and fitting in and these big questions, and there was no space to talk about any of that.

‘Instead, I had these things I viewed as ways of coping which taken off me, and so I replaced them with food and eating.

‘It shifted from being about my outward appearance to specifically my weight and my shape. That’s when it all started to escalate.’

On top of that, James says he had to deal with ‘a lot of stereotypical attitudes’ even from the professionals he turned to for help.

He says: ‘Maybe psychiatrists found it really difficult to think that it was a boy with anorexia, and thought that it must be something else,’ adding: ‘They were going around the houses with this diagnosis that left me feeling really confused, and they refused to see the obvious.’

Sadly, James found himself having to face up to the possibility that the professionals he’d turned to in a time of desperate need were simply not able to help him.

He tells us: ‘When I was diagnosed, there were no specialist eating disorders services at the time in Wales, and looking back, I think they didn’t really know what to do with me.

‘That was really scary, because I’d gone for somebody to help me and support me, and there was just nobody there.

‘You wonder “Who’s going to step in”, and at some point, I realised that nobody was going to step in. And that was really scary.’

When James’ eating disorder progressed to the point that he ended up in hospital, he was told staff could ‘probably’ keep him alive, and he began to wonder: ‘”Who am I waiting for? An expert to come and understand me?” They didn’t seem to exist.’

There was a moment when he realised that, if no one was going to step in and help him, he had to do the absolute best he could to help himself.

While that moment was a catalyst for James to start getting back to a healthier weight, he didn’t magically recover completely.

Ultimately, it was six and a half years before he was able to have specialist treatment because he was at different times told he was either ‘not underweight enough’ or ‘too underweight’ and therefore supposedly unable to cognitively engage with treatment.

In those years, he had what he describes as ‘a really poor quality of life.’

He says: ‘What we really need to be doing is giving people more options.

‘It wouldn’t be acceptable for someone with another condition to wait over six years.

‘I got into Cambridge to do music and I couldn’t take up the place because I was too ill, so I didn’t play music for eight years because it was too emotional.

‘Then I went to medical school when I was 21 and dropped out of that as well, because I was spending more time on the eating disorder than I was on my job or my studies.

‘I never gave up wanting to try to do things, but I could never sustain doing anything if I didn’t have the health.’

At last, after he’d left medical school and moved back home because eating disorder services had started being offered there, James finally began to get help.

However, that wasn’t the end of his journey and, after such a long wait, he feels that his issues were ‘entrenched, and so much more difficult to treat.’

It can feel particularly crushing when you reach out in some of your darkest moments and, instead of getting help, you’re met with misunderstanding and ignorance.

James says: ‘When you get into that really vulnerable place of recognising there’s a problem, it then takes a lot to go and ask for help. And I think that’s a massive act of bravery. 

‘In that moment, somebody is really vulnerable, and there’s a great potential to do good. I think we don’t talk about that enough.’

‘But,’ he adds, ‘there’s also potential to do harm.’

James says one doctor even asked him “Why do you want to have anorexia?”

‘As though I’d just chosen it for the day,’ he tells us.

‘”Why do you want to have anorexia because boys don’t want to look skinny, they want to be muscly”.

‘I was like: “Well, for starters it’s not a choice.” I didn’t just want to have it.

‘It just shows that there’s such a feminised view of eating disorders and what they’re about.

‘Actually, we know that in a lot of men there’s a big relationship between the drive for muscularity, muscle dysmorphia, over exercise, even bulking up and all these kinds of things that have got nothing to do with anorexia or nothing to do with the stereotype.

‘It’s strange, because when I was very, very underweight people were like: “Oh that’s an eating disorder, and that’s not masculine.”

‘And now that I’m a normal weight and I still have an eating disorder, but I’m quite fit and toned, people say: “Oh, you must be well”.

James adds that there could be lots of men out there who might not even realise they have a problem because, rather than giving attention to the men who have unhealthily restrictive habits with their diet and gym routine, ‘we have a dominance of anorexia in our understanding and in services.’

He adds: ‘We’re not even asking those people “Do you think that might be a problem or an eating disorder?”, because we’re saying “Well done for going to the gym, you’re doing really well, you’re smashing it, this is the ideal.”‘

James believes the idea that people have of the person with an eating disorder needing to be someone who’s shrinking isn’t enough to encompass all that an eating disorder can be.

He says: ‘It’s not about that image of shrinking at all, but the one thing that does happen is that your life shrinks.

‘The guy in the gym, who won’t go socialise because the gym has to come first in the schedule – I think that is a narrowing of your life. There’s less freedom.

‘Disordered eating can really impinge on your freedom to do things and make your life smaller.

‘It’s not necessarily about your body becoming smaller, although that’s really drummed into us.’

In James’ experience, he also hasn’t found treatment to be geared very much towards men, explaining how treatment settings were ‘feminised’ with butterflies and quotes from inspiring women and female celebrities on the walls.

‘Like, “You don’t need a thigh gap”, “You don’t need a bikini bridge”, all this kind of stuff,’ he says.

‘I feel uncomfortable with that, and I’m not particularly masculine, so I wonder how would somebody else feel. Would they feel really excluded or really patronised?

He adds: ‘I didn’t really get it explained to me how the body changes specifically for a man. Whereas I did get information given to me about menstruation.

‘I did get given books which had only female pronouns, like “she will experience this”, “she will experience that”, and that felt very excluding to me.

“I felt like “Well, what I’m going through is niche or weird, or it’s not real, or it’s not a valid eating disorder”.’

When James was growing up, he says he didn’t see anyone who looked like him in the media who had similar experiences with eating disorders, and that only served to make him feel ‘much more isolated and alone.’

He points out how eating disorders can be isolating experiences in and of themselves, due to the fact that so much socialisation revolves around food and drink, and says that not being exposed to anybody who’s going through anything similar can be even more alienating.

‘I think that was when it was at its worst for me,’ he says, ‘when I felt like what I was going through wasn’t real, because there were no other examples of people who’ve had the same experiences, or examples where it got better, or any sort of inspirational stories to look up to that would give me hope.

‘I felt that I had no hope that I would ever get better, and then treatment services told me “You’re going to live with this for the rest of your life”.

‘I was told that as a teenager, which I think is awful. I wasn’t provided with that hope.’

He adds: ‘I felt that there must have been something uniquely bad or mad about me, and that wasn’t the case.

‘It’s just that I wasn’t seeing other people who were struggling, but they did exist, and they do exist.

‘Knowing that you’re not alone isn’t therapy, but it is something that can help.’

‘It’s something that can can at least stop you from feeling even worse.

‘I think there’s some power in that, and it can provide you with hope’

One of James’ concerns is that he wonders whose voices are not being heard because they don’t fit the stereotypical idea of what someone with an eating disorder looks like.

‘The more we can dismantle this image of eating disorders as a skinny, white, middle class girl,’ he says, ‘the more we’ll be able to understand everybody’s experiences.

‘That stereotype doesn’t serve girls, it doesn’t serve people with anorexia, it doesn’t serve anybody. But if we keep perpetuating it, then we keep missing people out.’

When asked how he’d like things to change in future, he explains that, as well as a need for more training among healthcare professionals and more funding for eating disorder services, we have to make sure people who need help aren’t spending so much precious energy trying to be understood when they need to be focusing on getting better.

He tells us: ‘We like to think that recovery is all about individual strength, and your own personal determination, but I think my recovery has been as much about all the people who’ve helped me along the way – about my friends, my family and those professionals who have helped me along the way.

‘I think that it was really damaging to think “You’ve just got to do this all on your own because nobody’s going to be there to help you”, and that made it really difficult for me to ask for help again.

‘Even now I find it hard to go to the doctor and ask something because I’m scared of them not understanding.’

These days, while James is still in the midst of recovering from bulimia, he’s feeling ‘much better’ than he ever has.

As well as teaching yoga and barre, James is a mental health and eating disorder campaigner, writer and researcher, and says finding yoga was a ‘massive turning point’ because he now enjoys nurturing his body rather than ‘just punishing’ it.

Part of his work around mental health also involves raising awareness in professional environments.

He tells us: ‘They always ask me about “What can we do for men?” and “What’s the men’s perspective?”

‘And I’m like: “Well, for a start, there is no one man’s perspective, because all men are really different.

‘Also why am I so niche? Why do I represent diversity? Because I don’t in many ways, but they think “Oh, we have this really special niche thing”.

‘That shouldn’t be the case, because a quarter of people with eating disorders will be men.’

He adds: ‘I think that we need to get better at telling a range of stories.

‘Not just that eating disorders can affect people from different backgrounds like men, but also the different kinds of experiences of disordered eating.

‘Because the more we just repeat the same story, the more people are left out.’

Crucially, James now speaks as though he has hope for the future.

He says: ‘You don’t have to be completely recovered to be able to talk about these subjects.

‘You can still have struggles and have a life that’s got meaningful things in it.’

He adds: ‘I’m very confident that I’ll recover.

‘It’s just about finding the right pieces of the puzzle to come together to give me the right environment and the right skills to not need this behaviour anymore.’

Even though it’s been difficult, and it’s not the life he expected to be leading, James says: ‘I am so glad that I did decide that I had to keep going.

‘That’s a story I probably would have liked to have heard when I was really struggling.

‘Actually people can find a way through, and you can build a really meaningful life that you love.’

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