Eating disorders (young people)
Peer support
People got support in a number of ways. Besides formal help such as counselling or therapy, many people we spoke with had been to peer support groups to give and receive support and information from people who had been through similar experiences. Peer support groups for eating disorders are run across the UK by charities like Beat (Beat Eating Disorders), MGEDT (Men Get Eating Disorders Too) and Mind. Some universities and counselling services also run peer groups. Some people had attended groups during their stay in hospital. Meeting face-to-face wasn’t for everyone and some had used online support forums.
Positive experiences
“They are the only people who know what you’re going through.” Hannah O
Overwhelmingly, people felt that others who’d had eating disorders were the only ones who could really understand what they were going through. It could be easier to be honest and open with people of similar age and life situation than a therapist, doctor or a parent. Charlotte said in a peer group setting she could just be herself and “not have to pretend to be normal”. Suzanne said she didn’t want to burden her friends who didn’t have eating disorders with her worries.
Georgia found the Beat support group positive, focussed and helpful. She found it much easier to...
Georgia found the Beat support group positive, focussed and helpful. She found it much easier to...
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There’s a Beat support group that I go to which I think has been more helpful than like anything, anyone that I’ve seen. So that’s been the most helpful thing.
And they meet here in this town?
Yeah.
What happens there?
It’s kind of a group of people that get together and then talk about their experiences, and how they’re coping with things.
And had you before that met other people who’d had similar experiences?
Yeah. I kind of knew quite a few people I don’t know how but it just kind of like through friends and stuff I’d know other people but I think they weren’t really in, none of us were really in the best position to help each other ‘cos we were all struggling. Whereas the support group’s more positive and focuses on what can be done.
So is it led by peer..?
Yeah, there’s like two facilitators I think, and they kind of like lead it, but and then everyone else kind of talks, like together.
So what are the sorts of things that you feel like you’ve gotten from that?
Just like knowing that there is support there; and I like kind of felt that it’s understood more there. Like I don’t really expect someone to understand it fully if they haven’t got it, ‘cos half the time I don’t understand it, but there I kind of feel like they understand it more than the counsellors that I’ve seen.
And do you find it easy to talk there in front of the other people about what you’re experiencing?
Yeah. Like I found it very difficult I think if you asked the people that I saw they’d just, yeah I found it very difficult to talk to counsellors but it’s a lot easier to talk with people that kind of understand it. Like the same age, in and around the same age as you.
Nikki says its “healing” to be around people who have similar experiences.
Nikki says its “healing” to be around people who have similar experiences.
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I mean I love to kind of, what I’ve learnt probably the best thing I’ve learnt from out of everything is never stop learning. You can never ever stop learning in anything you do in life. And every young person and I’ve met a lot of young people along the way, a lot, but I’ll never ever stop learning and everyone you meet has something to give. And it’s strange, it’s kind of weird because you realise that everyone you meet you have something to give to. And that’s what I find quite nice that in these interactions with people that have their own experiences that happen to be similar to yours, you kind of give a bit of yourself and take a bit of them and, in a nice way [chuckle], not in a horrible way. Yeah no I find that, it’s quite healing. It’s quite a healing process to be around people.
Meeting others with similar issues helped people realise they weren’t alone and that they didn’t have to be secretive about their thoughts and behaviours. Suzanne said it’s important just to know “I’m not the only one”. Maria said it was “comforting” to know that others had “comparable experiences”.
Peer support could also help compensate for family support if it wasn’t available or wanted. When people felt isolated in hospital, support from the other patients could be essential. Georgia said that peer support was one of the biggest factors in her recovery. People often continued to be friends with other members after they had stopped attending groups.
Rebekah goes to an 'outstanding' self-help group. She doesn't have much family support and says that without support people can become isolated.
Rebekah goes to an 'outstanding' self-help group. She doesn't have much family support and says that without support people can become isolated.
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But at the moment I’m involved in a self-help group for eating disorders and it is, it’s fabulous, it’s excellent. The support that I get from them is just, it’s outstanding, and I find it, you know ‘cos I don’t get support at home, like my home life is pretty rubbish, and so getting the support off them daily, it’s just great because you know, you know where you are with them, and that it’s really like informal so, and they’ll tell you like if, you know, if I’m having a really rubbish day I can just say that I’m having a rubbish day and they’re there, send me a text, give me a call. And I’ve made really amazing good friends in the group, and they’re just great. And I think, and especially after you’ve come out from hospital, you, I think you always need that sort of like back up seeing the consultant, seeing like the help, the therapist etcetera, because you can’t just be set, just be gone back into the, step back, not step back, but step out into the world again without any help, because I think you can become quite isolated again and you know you need the support.
Looking back on their experiences, many felt that the support groups worked best when people shared the same mindset and were at a similar stage of recovery.
Supporting others
“Because I knew how hard it was for me I didn’t really want other people to be in the same position.” Maria
Supporting others could become an important part of people’s own recovery. People said being able to support and advise others made them feel good about themselves and gave them a sense of “worth”. Volunteering helped Catherine feel that her “life is worth something”. Hannah O felt that after all the help and support she got when she was ill she “owed” it to now help others. People felt that what they had been through gave them a unique perspective to help others. Through helping others, people felt their difficult experiences hadn’t been “a waste” and their past had a meaning and purpose.
Jasmin is a Beat Ambassador and says that it makes things easier when people were surrounded by...
Jasmin is a Beat Ambassador and says that it makes things easier when people were surrounded by...
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I feel like there is a reason for everything and as horrible as the whole experience has been there’s a reason it, it’s made me a much stronger person I think, and a much happier person now. Because I’ve learnt so much about myself, and I just think from this I’d like to be able to do something positive with it. I’d like to be able to help other people or raise awareness, because I think raising awareness is, that would help a lot more people… just, I think, for people in recovery if they’re surrounded by people that understand, it would make it a lot easier. It would make people feel like they could be a lot more open about it. The way doctors deal with it I think if doctors were more aware of it, so yeah that’s just kind of why I chose to want to be an Ambassador for them because I just want to help do something good with the experience and help other people.
Volunteering by supporting others or running web campaigns, for example, could also be a positive distraction and a way to channel energy towards a good outcome. Georgia said being active in a self-help group helped her focus on “what you can do, not what you can’t”. Fiona-Grace said that talking to others can help you “listen to your own advice”. Volunteering could also help boost confidence and help people learn new skills as well as gain knowledge of the health care system. People also wanted to voice their concerns on behalf of those who were too ill or shy to speak up.
Becoming a Beat Ambassador helped Hannah Z in her own recovery because she felt understood for...
Becoming a Beat Ambassador helped Hannah Z in her own recovery because she felt understood for...
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I was nearing the end of Sixth Form, I kind of like took the decision to like really recover like I’d never kind of like, I wanted to kind of like, have a new start with University and stuff and I just thought, I really want to get like involved in campaigns, I want to like raise awareness and everything. So then I like became a Beat ambassador and that really benefited my recovery cos that, for the first time, I kind of felt like other people understood. Like we were all sat in a room kind of thing and everyone else like had a same experience, not the same experience as me, but they understood what I’d gone through and stuff like that. And I made really good friendships in that, so we always talked to each other, we keep each other going and we know when people are struggling so we kind of like help them through it, that’s really helpful.
Do you find it easy to be sort of honest and upfront with them about what’s going on?
Sometimes I do, but then I feel a lot of responsibility and I don’t want to trigger them in anyway cos, you know, with saying too much information, you can sometimes be triggering so I feel like there’s certain things that I should just keep quiet about but, but like with the whole mind-set aspect of things, I feel I can probably say anything.
The limits of peer support
Face-to-face support groups didn’t suit everyone and some people preferred to use online forums or just speak to their family and friends. Often people didn’t want to burden other people with their problems.
Face-to-face support groups didn’t suit everyone and some people preferred to use online forums or just speak to their family and friends. Often people didn’t want to burden other people with their problems.
David felt peer support groups were not for him. He felt his problems were personal and he didn’t...
David felt peer support groups were not for him. He felt his problems were personal and he didn’t...
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I’m not sure it’s entirely for me. I, you know it, I understand for some people you need, you need that. I think that for me, you know it’s just being comfortable with myself and being happy with myself is a very personal thing. It’s me. It’s for me to be comfortable with myself. So it’s being comfortable in my head. And I have many issues with partners and friends where they have always thought I’m crazy for how I feel about myself, or if I feel big. So having someone tell me I look good, I already know that actually has no effect, or, not telling me I look good but having telling me, having someone sit there and telling me that I, that I look skinny or when I think I don’t doesn’t actually have any effect on me. I know that from experience and I’ve probably driven a lot of people crazy with arguments to that effect. So yeah, I just don’t think for me it’s, it’s something that I need to sort out in my head, you know, myself.
I’m, and again it’s that hating to be a burden on someone, I don’t want to take up someone’s time sorting me out, while you’re like, I just feel that’s not who I am as a person. I think I prefer to do; I like to help people out and listen to them and support them when I can, and I hate taking it back off people I think. And that’s again that’s an issue that I just need to address for myself I think.
Hearing other people’s experiences could be difficult. Some were worried that if people were at different stages of recovery they might bring each other down. Particularly inpatient groups could become competitive or people could learn “bad habits”. Craig chose not to attend support groups because he said he might feel guilty or “fake” if he saw others who he thought were more ill than him. Attending groups could be emotionally hard and some ended up taking too much responsibility for others’ wellbeing while still trying to recover themselves.
Sam, who ran a support group for men with eating disorders, said that coming to support groups might at first feel “daunting”, especially for those who’d never spoken about their experience before.
Sam decided to start running peer support groups for men at MGEDT. It was hard to get people to...
Sam decided to start running peer support groups for men at MGEDT. It was hard to get people to...
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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.
Because of lack of resources, peer groups cannot be always run in all areas of the country. Some people were very keen to attend a peer support group or see a support buddy but there was nothing available in their area. A few people had helped set up a group in their town or university with help from Beat.
Online support groups
Both Beat and MGEDT host web forums and run online support and live chats. Online support is easily accessible and some preferred being anonymous. However, people had to careful online because it wasn’t always easy to know which websites were trustworthy. Jasmin found it much harder to find safe recovery sites than pro-eating disorder sites.
Both Beat and MGEDT host web forums and run online support and live chats. Online support is easily accessible and some preferred being anonymous. However, people had to careful online because it wasn’t always easy to know which websites were trustworthy. Jasmin found it much harder to find safe recovery sites than pro-eating disorder sites.
Jasmin started her own recovery website to help others. She covers information about eating...
Jasmin started her own recovery website to help others. She covers information about eating...
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I’ve started a website because I found recovery websites helped me a lot because I was actually hearing from other people that had been through the same experiences and they’re saying, “This has helped.” And, you know, I, they just have a, a lot more ideas about things that might just kind of help you get, because if you’ve been through it yourself then you can say, you know, “I tried this and this helped me.” and I kinda wanted to be able to do that for other people too. So I’ve started one and I have put some of diary entries on there throughout recovery because I think that’s one thing you don’t, when you’re in recovery you don’t, have any idea, you don’t know what recovery’s going to be like.
I think on a lot of, pro-anorexia sites there are links to loads of others, whereas the recovery ones cos there aren’t as many you can’t, it’s hard to find links to them… but, I kind of, with mine I’ve tried to do it with all the different things that I found helped me and not just make it about eating disorders I’ve tried to put a bit about depression and things on like that on it, advice for friends and family so that they can kind of understand a bit more… but I, yeah there were some that I found that just… just, like things you can do like writing lists of all the reasons to recover or affirmations, different, different things you can say to yourself. Or different kind of recovery project things you can do, just whenever, you know, I was feeling a bit down I could go on and read them and there would be positive quotes and things like that and, it just makes you think if they can recover then so can I and, gives you a better idea of what to expect.
Even though people often found advice and information from other peers comforting and reassuring, they could be left with specific questions or wanted more information about a particular type of eating disorder. Many men said they had struggled to find relevant information and had really appreciated the MGEDT website and support forum.
MGEDT hosted regular online chats for men with eating disorders. Sam describes them as online...
MGEDT hosted regular online chats for men with eating disorders. Sam describes them as online...
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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.
Pro-eating disorder forums
Pro-eating disorder (called pro-ana, pro-mia or pro-ED) forums have been criticised for appearing to present or even promote eating disorders as a lifestyle choice rather than as a mental health issue. These sites have been criticised for seeming to encourage their members to lose weight by sharing tips on restricting food intake, dieting, vomiting and secrecy and by promoting ‘thinspirational’ images. Some of these websites do also include recovery information.
Some people we spoke with had come into contact with pro-ED sites. Others had never visited the sites and actively avoided them. Those who had used them had done so at times when they were ill. People described these forums as “dark communities”, “stupid”, “scary” and “lonely”. They had found the sites “extremely triggering” meaning that they can encourage eating disorder habits and make people with eating disorders feel worse. This was because people on these sites were describing their behaviours in a positive way and encouraging others to restrict or binge & purge. The detailed discussions about weight loss, calories and photos could be also triggering. The use of pro-ED sites often increased as the eating disorder became more serious. Typically people would spend hours on different forums every day, keeping online diaries and reading those of others.
Rebekah said it was easy for a 13-year-old to get involved in Pro-Ana sites. What started as a...
Rebekah said it was easy for a 13-year-old to get involved in Pro-Ana sites. What started as a...
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I kind of kind of caught up in all that whole sort of pro-anorexia circle, and it was only until, only when I guess, ‘cos you know the whole internet was a big thing and it was easily accessible and for a 13 year old girl it’s really you know, it’s so, when you’re on the internet and you come across it it’s like, “Oh okay.” And someone that’s already struggling with their, with their body and their weight and body image issues, it’s like, “Okay well I can do this, I can do that,” and so that became a real big issue for me.
But I got out of that while I was fifteen, even though I still, ‘cos I kind of realised well, whoa that’s a problem, I can’t, this, you know it’s not right, it’s kind of, it’s disturbing. But my eating disorder was still going on and it was, I just wasn’t involved in it anymore and, now it’s just like, I can’t, just can’t even believe that I was actually ever involved in that sort of situation.
I did, I just had to leave because I think it became, you know, from what sort of started as sort of like a support system, kind of ended in like a competition between girls, and posting their weight, their calorie intake, so it was so extremely... and I thought, “Well I can’t hack this. I’m not here for, not here for competition, I’m not here to know what your weight is,” I wanted support. So...
Do you remember at the time, how did you feel about their comments or reading other people’s posts? Do you remember what you felt?
Well, Ashamed. I felt, ‘cos I remember, you know, I would post, say, “I’ve had X-amount of calories today” and they’d be like, “Well that’s a bit too high.” So I was like, really ashamed of myself. And then say other people’s posts were quite, you know they would post what they’d eaten or what they were planning to do, and then the girls like cheering them on, and it was all like, “Whoa,” I kind of found that really disturbing, ‘cos I felt well, you know people with eating disorders they’re kind of like a slow, you know, you slowly are killing yourself, and these girls or boys even, and they’re like cheering you on, they’re telling you to do it and it’s, it I couldn’t like, I didn’t understand that concept. So, and then I realised well, this isn’t right, this really isn’t a place where I want to be involved with. So I had to, I just thought, well I need to delete this account, I need to, I can’t have any more involvement with this because it’s negative, it’s affect, it’s not good for me and if I want to get better then I need to leave.”
Looking back, people had found the pro-ED forums the only place where they felt understood when they were ill. Eva described how she wanted encouragement to lose weight and she trusted people on the forum because they all shared the same (unhealthy) goal. When Laura was ill, pro-ED sites were the only place where she could “talk about how I was” and relate to others. Jasmin felt that pro-ED forums could help those people who were not yet ready to recover but wanted to talk to others to feel less alone. Some people felt that pro-ED sites wouldn’t make people do anything they weren’t going to do anyway. Others were very angry that the forums were allowed to openly promote behaviours that could be highly dangerous. People commented that although at the time they had felt they had “needed” the pro-ED forums, this was linked to their mindset of being ill. Laura said she had been naïve about their impact and only when looking back, she realised that using the forums “kept me as bad as I was”.
When Laura was ill, the pro-ED websites seemed to make sense to her. Later she realised how...
When Laura was ill, the pro-ED websites seemed to make sense to her. Later she realised how...
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At the time I think I was just naive and didn’t really know but that I think, I can definitely say that that kept me as bad as I got. I don’t think I’d have been, I think I learnt quite a lot from it, which isn’t good but at the time I didn’t realise this. So, and I started counting calories, I’m like, my whole life I’ve never, before that I’d never known calories, or I didn’t even know what my weight was really before, but kind of I started counting calories and I knew all the calories in everything, and I started only having kind of a certain amount of calories and then it gradually cut down. And I wouldn’t allow myself to go over that amount.
So originally I just kind of joined the community, and just read other people’s posts, and, to start off with it wasn’t really something that I was that kind of into. But as it went by it became something like a daily, I had to go on it every day, and I was kind of set up my own journal and looking back at it now I don’t know why I did it, but on my journal was kind of me saying my weights and what I’d eaten and posting pictures of before and after, and because I wanted to be thinner and I wanted people to say whether I looked thin enough, or kind of, because that’s a big thing, that people comment and say that you’re looking good or kind of encouraging to stay ill, which is really wrong, but at the time it was the only place that I could kind of talk how I actually was.. Because no-one else understood, like around me at college they all just kind of kept telling me to eat and they didn’t really know what was going on. But on the websites I could actually say how I was, how I was feeling and I could see that other people were feeling the same.
So to me it felt like a nice helpful environment at the time. But I know that it wasn’t, now. Because it was really unhelpful really. Because I think without them, although I wouldn’t have had kind of the understanding of other people, I wouldn’t have learnt as many tips and tricks as I did, and I probably, if I didn’t have, if I hadn’t come across them then I probably would’ve spoken to people sooner. Yeah.
Why do you think that is? That you would have spoken to people sooner?
I don’t know. I think it wouldn’t have been, I wouldn’t have felt like it was such a big secret. Whereas with like the pro-ana websites, a lot of it is kind of hiding and kind of you learn how to hide stuff. How to hide behaviours and your physical looking and, so I think if I hadn’t learnt all those things and I hadn’t been caught up with being ill and trying to stay ill, then I might have listened to other people. Whereas I felt like the people who I became friends with on the websites were the people to listen to because it made more sense to me at the time.
Further links to eating disorder peer support groups and online support and recovery forums can be found on our resources page
Last reviewed October 2018.
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