Sam

Age at interview: 25

Age at diagnosis: 16

Brief Outline:

Sam experienced bulimia since his teens. He never had counselling for a long period of time but through other forms of support and life changes, the bulimia gradually faded when he was around 18. He is now fully recovered and describes the time with eating disorder like 'a previous life'.

Background:

Sam is 25 and runs the only UK charity for men with eating disorders; 'Men Get Eating Disorders Too'. He is single and lives on his own. White British.

More about me...

Sam was badly bullied since the start of secondary school. He was clever, didn’t fit a typical male stereotype and became a constant target for bullies. As the bullying got more severe, Sam started skipping lessons and his grades dropped. In school he used to hide in the toilets and comfort eat. After a while, he started making himself sick after eating as he felt so uncomfortable. Binging and purging soon became a habit which Sam describes as “a fulltime job with overtime”. He would purge daily, at home and in school, but he kept it discreet so nobody around him had any idea. 

 

Towards the end of school, Sam was feeling depressed, anxious and suicidal. One weekend he decided to contact the on-call GP at the local hospital. The GP took him very seriously and wrote an emergency referral to CAMHS (Child and Adolescent Mental Health Service). However, CAMHS couldn’t treat him without parental consent, and as Sam didn’t want to tell him mum, he decided not to go back there.

 

Sam’s school referred him to a life skill’s course. His tutor was very supportive and Sam could tell her about what was going on. Around that time, Sam also came out as gay. As Sam’s home life had been unstable, he moved to live with another family as a form of supported living which he found very beneficial. As Sam turned 18, he decided to contact his father who he had never seen and eventually moved across the country to live in the same town with him. Sam lived in supported housing for people with mental health issues during which time he started doing volunteering with LGBT (lesbian, gay, bisexual, and transgender) youth groups. Sam says he didn’t make a conscious effort to recover but gradually the bulimia started fading when he was between 18 and 20. Many of the factors that had earlier fuelled the eating disorder had now disappeared from his life, and he was building a new life. 

 

Sam had become interested in volunteering and in 2008 set up his own campaign to raise awareness of men & eating disorders as he realised there existed no specific group or charity for men. The campaign attracted a lot of media and public interest, and soon grew into a registered charity ‘Men Get Eating Disorders Too’ (MGEDT). In the past three years, Sam has seen a change in attitudes about men’s eating disorders and is seeing more and more men coming forward wanting to share their experiences and seek help. A key aim of MGEDT is to work towards gender-inclusive attitudes and service provision in eating disorders so that, firstly, men feel able to seek help and secondly, once they do, they are taken seriously and get the help they need.

 

Extended bullying over years was a major factor in triggering Sam’s bulimia.

So of course a lot of that over time sort of built up and it’s the bullying, like a lot of bullying if often spreads, it’s like a disease. You know once one bully you know gets away with it time and time again other people join in, and before you know you’re getting ganged up on. You know and that was the secret of the school yard, it could be even in lessons, you know if the teacher couldn’t quite control the class. So for about two years, years 7 & 8 it was just constant teasing and you know I probably just about coped with it, and then in Year 9 I think that was when everyone’s hormones sort of seemed to kick in, because it seemed to, you know become more intense. The bullying was more it became almost more violent. 

 

Of course as the bullying continued, the bullying became more frequent, you know, I’d not just binge and purge at school but also at home, when I got home particularly, you know there was a sort of window period between me getting home, my mother getting home with my brother and sister. So I used to just binge and purge frantically in that period which really just became every day really.

 

Sam had always thought bingeing and purging was just something he'd invented. The first time he realised it might be bulimia nervosa was when reading an agony aunt column.

I think the first binge would have been at 13, which then evolved into purging as well. I can’t really sort of; it probably was at 13 as well, I mean how I found out about, that I had bulimia was at 15, it sounds odd but I was just reading an agony aunt column in my Mum’s magazine, and I was completely bored one day clearly, and it was a good thing that I did read that in a way because there was a letter from a mother who had just split up from her husband and their kids and she was setting out to become a single parent, couldn’t cope, so in the evenings when she put the kids to bed she would binge and purge.

 

Now how she described it in that letter was very much what I did and I sort of thought, “Hang on a minute, this is a bit familiar,” and you know I’d never at that point seen it as a problem. Didn’t think it would cause any damage as I say so it kind of alarmed me and of course I read the response from the agony aunt, it was basically saying, “You’ve got bulimia.” This was a whole new word for me; “This is what you must do. You must speak to the doctor. These are all the health consequences,” which were all quite scary, it was like you know you could have cardiac arrest and digestive problems and all this sort of thing. And I was just like, “Oh my God.”

 

I thought I made it up myself, you know, I thought I was, you know something that only I did, you know I never thought in a million years this was something that lots of people did, and deliberately did to cause damage to themselves. You know it wouldn’t have crossed my mind.

 

As I say I think I was really quite naïve at that age, and I think you know I really genuinely thought that because you know you’re sick at the time that you’re ill and that makes you better, so what makes the difference if you make yourself sick. You know and because I felt I was going to be sick anyway, it was a case of get it over and done with. So no, not at all and, yeah I think you know it’s probably that in other people as well, you know I get the sense that it, you know it can often be sort of self-invented if you like which is not unusual.

 

Sam decided to start running peer support groups for men at MGEDT. It was hard to get people to attend, but once they had they often came back.

We have piloted a face to face group last year in [City] for a year. It was a bit of a tricky one to be honest I mean we did get quite a few guys you know contacting but not necessarily coming to the meetings despite all the tricks in the book to try and get them there. And of course it is very daunting for any man, particularly when they’re not getting help anywhere else, to put the step, feet through the door and take part in a group. It’s quite scary particularly when they might still be very much within their eating disorder and not that at that point of recovery or willing to recover. 

 

But once we got men through the door it’s quite, they kind of got a lot out of it and actually came back to meetings so there was, it was quite successful in that sense. I mean we hope to sort of re-visit that again at some point in the future.

 

MGEDT hosted regular online chats for men with eating disorders. Sam describes them as online drop-ins where people can come and go anonymously.

At the moment we’re piloting live chats, because you know it means that we can reach out to men, wherever they are. They haven’t got to leave the house, you know it’s very anonymous, confidential, supportive space that is not, and you know so intimidating as going to a group. And hopefully that will kind of be a bit of a link between those men that are not getting help, hopefully through reduced isolation and that online community they build and those supported relationships from that group will then encourage them to go and get help elsewhere, whether it be counselling, whether it be them joining a support group or whatever.

 

So that’s, that’s the idea. And as I say it’s very much in its early stage of its pilot so I can’t really sort of say how successful it’s been so far, but you know it’s looking promising and I suspect that’s something that we’ll do long term.

 

And do you have sort of facilitators in the live chat? 

 

Yes.

 

How does it work?

 

I mean it’s very, very informal. Each session has a theme, just so we’ve got a point of discussion, there is two facilitators who are anonymous, just to protect that anonymity of the group so people don’t think that they have to identify who they are, because I think that could put people off. Of course we would have user names instead and you know it’s just very sort of, it’s almost like an on-line drop in, so people can come and go and take part in a discussion and you know and then just leave at any point. You know so it’s very sort of flexible.

 

Sam didn’t want to tell his family about eating problems. His mum found out when, a counsellor...

Of course, you know I’d never told my mother or my step-dad about the bulimia, so of course I didn’t want them to know. But you know the counsellor was very he couldn’t really you know advise me that you know you couldn’t go for treatment unless you have parental consent because I was under the age of 18. So that put you know a bit of a, it was a bit of a problem for me. And I decided to say no really because you know I just wasn’t prepared to tell them just yet. Or if at all.

 

But they did phone anyway and they left a message on the answer machine, of course my mother was quite sort of surprised, and didn’t know what it was about, and I think I did tell her and she didn’t really sort of respond to it.

 

Sam was bullied in school since he was 11. Teachers had no control over it. Sam started comfort eating which eventually turned to purging.

Well I guess it really began when I was 11, it was, I was in year 7 the first year of High School and from the word go you know I was bullied quite badly, mostly teasing, for lots of different reasons. It was partly because I was very clever, that was very obvious I was in the top set, I was called “swot” quite a lot, and various other words like “boffin.”

 

And it was probably quite apparent to my peers that you know I was not conforming to the typical male stereotype. You know I didn’t, wasn’t interested in football, wasn’t interested in girls, and wasn’t interested in any of those things. And it was often assumed that I was gay. And I was called all those different names that were quite derogatory and of course that bothered me, but at the time, I didn’t know what gay was, because of course the word itself is often misused. Just because I am something that’s not good or un-cool, as in that is gay. So of course I had this sort of slightly odd idea about what that word was, and it wasn’t the true meaning.

 

So it meant that you know I couldn’t, and certainly at that age I didn’t, you know, it wouldn’t, I didn’t obviously think that I fancied men, you know, so that I was too young really to sort of make those, you know realisations, and least of all that connection between the word and what, what it really meant.

 

So of course a lot of that over time sort of built up and it’s the bullying, like a lot of bullying if often spreads, it’s like a disease. You know once one bully you know gets away with it time and time again other people join in, and before you know you’re getting ganged up on. You know and that was the secret of the school yard, it could be even in lessons, you know if the teacher couldn’t quite control the class. So for about two years, years 7 & 8 it was just constant teasing and you know I probably just about coped with it, and then in Year 9 I think that was when everyone’s hormones sort of seemed to kick in, because it seemed to, you know become more intense. The bullying was more it became almost more violent. 

 

I remember on one occasion in Year 9 I think it was like the first geography lesson, and a bully decided to pick on me that day and I think I reacted to him by saying, “Will you please go away,” or something and he said, “No,” and I threw something at him because you know I was just so annoyed, and of course you know I was really beginning to not be able to cope with it, you know, I was quite anxious, it was the beginning of the school year, so I just stormed out of the lesson.

 

And that’ s what I frequently did at that point, but where I would go, you know it was the boys’ toilets, locked myself away in a cubicle because it was the only place you knew you wouldn’t be found. And I don’t really remember the first time but I used to sort of just comfort eat, partly from boredom but partly for comfort. And you know that used to make me feel better but sometimes you know I’d eat so much in such a short period of time you know I’d feel quite uncomfortably full. Of course there’s all that bit of tension and anxiety, so that whirling in the stomach sort of feeling, and you know I really wanted to get that out. And I felt like I was going to be sick anyway.

 

Through running peer support groups for men, Sam has noticed that men don't always recognise the signs and symptoms of eating disorders.

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.

 

Sam believes that if he was a woman, the GP would've diagnosed him with bulimia nervosa. His GP thought he was suffering from depression and prescribed antidepressants.

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.

 

Sam decided to set up the UK's first charity for eating disorders in men. He describes the success of MGEDT (Men Get Eating Disorders Too).

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.
 

Sam describes how, thanks to increased media coverage, more men are coming forward with their stories of an eating disorder.

[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.