Eating disorders

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 (Beating 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. 

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,.
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.
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.
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.
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.
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.
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.
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.
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”.

Further links to eating disorder peer support groups and online support and recovery forums can be found in our resources section.

Last reviewed July 2015.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email