Weighing up online support

I regained me before ‘coming out of the closet’, so to speak, to share my experience of an eating disorder.  I have been exploring ‘online’ for about five years. That’s all. I have met many people online in this time and cherish the many friendships that have evolved from communicating in this way. Although I had recovered from my eating disorder before I began to explore this online world, and while it had no part in my recovery, I am sure that it does play an important role in my ongoing freedom from my eating disorder. This is because I find understanding, acceptance and a sense of connection with others who have travelled, or are travelling, the same path. I also find the science fascinating – reading research papers and learning more about the illness that sabotaged 44 years of my life: this has increased my understanding of self – a powerful skill in ongoing recovery. How empowering and validating it has been, to learn that my illness was a biologically-based mental illness. That it was not a choice, nor a weakness. That I was not alone, as for decades I thought I was, in feeling such deep torment. People around the world were suffering, too, and feeling alone as me. I just did not know it. All this and more, I have learnt online, and it inspires me to raise awareness. I am convinced that we must shine the light on eating disorders, expose them, to overcome them. Keeping quiet, pretending they are not there, is to play into the eating disorder’s cruel hand.

My favourite online sites for inspiring information and support include: NEDA, Beat, FEAST, Maudsley Parents, Ed-Bites, Eating Disorders Research – King’s College, MentorConnect, Dr Sarah Ravin and Jenni Schaefer. In Australia: EDVButterfly. I recommend them all. There are many more wonderful sites, often maintained by parents or people who have recovered or who are recovering from their illness and I welcome guest bloggers on my site. We are a team.

But how helpful is online communication when you are in the full grip of an eating disorder, and how easy is it to move along with your recovery, given the rigidity aspects of the illness? Thank you to this reader for sharing her experience and offering food for thought. As she says, ‘you can’t help others until you help yourself’ but sometimes, others can help you until you can help yourself:
‘I think an important issue effecting eating disorder sufferers and carers is the impact of online “support” on a person’s recovery. It has not received as much attention in the media as it should. “Support” is ambiguous, because the support given and received is not always constructive. It can be as simple as “I’m sorry”, “I can relate”. I’ve been an active member of eating disorder recovery support forums over the years, and I’ve found they can harm as much as they can help. If caution is not exercised, they can also keep us stuck and prevent us from truly “moving on” with our lives. We might feel guilty for abandoning the associations we’ve made as we move further into our own “recovery”. There’s a danger in giving these online friendships more precedence than your “real life” ones. It definitely “tips the scales” when it comes to establishing and maintaining a much-needed sense of balance between life and recovery, no pun intended. When everything revolves around eating disorders, and you have no other shared interests, you run out of things to talk about. So you keep talking about eating disorders, and you continue to focus on them. Even if you don’t have a problem, subconsciously you find problems for the sake of maintaining these friendships, which can be unhealthy. I have seen even “recovered” people stuck in these communities, year after year, and they don’t seem to be moving on with their lives.
‘We become like the people we associate with, and the camaraderie that accompanies these friendships can be difficult to relinquish. Like other addictions, where people get high together, or even if they are recovering together – that “world” still takes up too much headspace, and at some point in time we need to move on and find other interests and activities to occupy ourselves with. There are definitely cases in which people have found these friendships enduring and rewarding, but I’ve become skeptical of how much they legitimately contribute to my quality of life, speaking from my own experiences. In some cases, it can subtract from it, and cause anxiety because you are “always worried” about how the others are going, and you can’t draw a line between your needs and theirs. I lost myself in that world, and only recently I’ve started picking up the pieces again and re-creating myself as a whole person with a new identity and worth that extends beyond being “of service” to those in need. We can’t help others until we can help ourselves, and even then, we need boundaries. I’m partly to blame, because I made an Agony Aunt out of myself and I was always there for people who needed my help, and eventually I fell apart and couldn’t cope. I relapsed a couple of years ago because I had no energy and support left over for myself, and this online world had become my life.
‘Subconsciously, it was a way of rendering myself incapable of giving out anymore advice, time and energy. If I was ill, how could others possibly depend on me? These online associations and communities add another layer of complexity to the illness, and pose unseen challenges for carers who are trying to understand their loved ones. How can they possibly understand, for better or worse, how these online friendships impact our behaviour and progress on a day-to-day basis? It’s a double-edged sword. We are drawn to online support because we have a safe place to communicate with others, are accepted and not judged. But the dynamics that influence online friendships between eating disorder sufferers are complex. Feelings of resentment and competition amongst members as to who can be the “sickest” and lose the most weight are common. Even in recovery, relationships can be charged because the recovered person might be less tolerant of those who are still struggling. Either way, relationships amongst the eating-disordered are emotionally charged in some shape or form, and caution should be exercised in setting healthy boundaries with these people just as much as we do with the people in our day-to-day lives.’
What are your views on online support? 


  1. Fiona
    Posted 21/04/2012 at 8:30 pm | Permalink

    It’s interesting because MY experience of on-line support has been of on-line support of CARERS. I see a lot of similarities in the communities, both for better and for worse and yes, there are disadvantages of getting “stuck”, and just in spending far too much of life in front of a computer screen (definitely guilty of that one). However eating disorders as such isolating illnesses for ALL involved, that in general I think the positive ability to learn, reach out, read, find camaraderie and knowledge outweighs the drawbacks for me.

  2. Posted 21/04/2012 at 10:03 pm | Permalink

    I have found real online support from people who are committed to pursuing recovery from an ED, who have recovered from an ED, or have children with an ED (e.g. the people from FEAST). I have no interest in pro-anorexia sites (which I simply do not comprehend…) or hearing about others’ experiences of what it feels like to have an ED. I know what it feels like to have an ED, and so what if my experience do or don’t concur with others’ experiences.

    I never knew about the online ED communities until I was about one year into ‘real’ recovery from longstanding anorexia nervosa (AN). This was in 2007. I developed AN in the 1970s and the internet didn’t exist then. Of course, AN did exist in the 1970s, and with a similar low incidence to nowadays. An is a rare disorder.

    I found ED communities by chance, when I was researching the science of AN to assist my recovery. I was quite amazed that people spoke so candidly about their ED, because I had always been deeply embarrassed about having AN. As I explored the online communities I was quite shocked; especially by the pro-anorexia groups – which I found incomprehensible. I didn’t find pro-anorexia ‘triggering’; just horrible. However, I found that those individuals committed to recovery, and those who had recovered from AN to be mostly a great support. I do not understand ‘competition’ between individuals to be the thinnest/sickest… and I simply cannot be bothered to waste time on sites that include or support this type of thinking or behaviour. I am in my 40s and such thinking/behaviours seems very childish to me.

  3. Posted 22/04/2012 at 12:32 am | Permalink

    So I guess that what I am saying is that I want/like to hear how people get better and stay in recovery; not how they stay sick, or what they do when they are sick. Moreover, online communities that support recovery via mutual support can be incredibly helpful.