Pro-Eating Disorder Websites – a Personal, Occupational Perspective.

1-1259162961jHiYI have a number of issues with Channel 4’s ‘Supersize vs. Superskinny’ programme, which returned for a new series last night. However, I often find myself watching to ‘keep an eye’ on the messages they are promoting. There are so many areas I could discuss but the purpose of this post is the reflections it prompted for me on the topic of pro-eating disorder (pro-ED) websites (often referred to as pro-ana or pro-mia sites, using the abbreviated versions of the illness names to promote a familiarity  with, or even personification of , the condition), which they included as a feature in the first episode. I wanted to consider my view on the ‘should they be banned’ debate, as well as analyse my own experience of engaging with them from an occupational perspective.

What was my experience?

When I had an eating disorder (ED) I initially drifted towards some excellent recovery forums and websites designed to provide peer-support to people who had EDs. They provided me with some understanding and insight into my experience and I could tell I wasn’t alone, but they didn’t quite ‘fit’. The problem was that I wasn’t in recovery. I wasn’t ready to consider it and so any support given wasn’t congruent with the situation I was in. I soon discovered the world of pro-ED sites. While I did come across the type often cited in the media – those promoting anorexia as a normal lifestyle choice, or those involving high levels of competitiveness between members – the majority were simply spaces for people living with a very challenging illness to find a shared understanding and support.

The site I mostly used allowed sections for posting ‘thinspo’ (images designed to motivate people to meet their goals), and also posted things like the foods we’d eaten or binged on that day, however tip-sharing was strictly prohibited by a moderating team. Along side the ‘encouraging’ posts there were serious posts about emotions, challenges, recovery as well as a forum full of games and distractions to help cope with the isolation often experienced when eating disordered. I’ve already acknowledged in Self-Defeating Meaningful Occupation that these sites provided me with a level of companionship. I made real friends there – some of whom I am still in contact with now that we’ve made our individual steps into a life after an eating disorder. I never felt that the sites prevented recovery – when someone was ready to recover they were supported to do so genuinely and sensitively. The nature of social media use meant that supportive friendships could be maintained through sites like Facebook or via MSN Messenger (it was a little while ago…) for those who wanted to step away from the site. For me, the pro-ED site definitely maintained my eating disorder – it provided a space where I was accepted and some level of comfort. However, I feel things could have been much worse without it.

Should pro-ED sites be banned?

I was never under any illusion that my eating disorder was healthy, ‘normal’ or ‘OK’ but I felt I needed it and was unable to stop. It provided me with a means to cope with high levels of distress and really was a lifeline at a very difficult point in my life, as well as nearly killing me. That’s the thing with eating disorders, they are full of conflict; allowing survival whilst simultaneously contributing to demise. Perhaps that’s the reason why it’s hard to have a clear view on pro-ED sites – they sustained my life AND my eating disorder.

I don’t feel proud of my engagement in the site – I hate to think I could have encouraged someone else to develop or maintain an eating disorder by discussing what I’d eaten that day, however, I was very unwell and have compassion for myself. I also worry about those people for whom a pro-ED site makes their eating disorder worse (mine was very serious long before I found the websites). I don’t believe, however, that a website like that can create an eating disorder that doesn’t already exist. Perhaps the question should be, ‘Do pro-ED sites encourage eating disorders to be sustained and potentially cause harm?’. I suspect they do. I also suspect that their existence saves an equal number of lives by providing a level of understanding that pro-recovery sites cannot, for those not ready to consider recovery. I feel very sad that there are still thousands of people out there who will tonight be posting on a pro-ED site, I wish there was a way to take away all of their problems this instant. Sadly that’s not realistic. I don’t know how I feel about banning the pro-ED sites. I don’t want to glorify them or say they’re OK, they really aren’t, BUT they do provide something very valuable and I really feel that without them I would not still be alive. Perhaps a greater understanding of the function they serve would be more useful that debating whether they should exist?

What did the occupation of being involved in a Pro ED site involve?

The occupation of posting on a pro-ED site involved so much! It was something I felt was a classic ‘self-defeating meaningful occupation’ meeting many of the occupational needs highlighted in the linked blog post. The forum provided a frame for my day – allowing conversation about emotional issues, current affairs or ‘fun’ topics as well as a space to report the food-based occupations I’d participated in. I developed habits relating to times of day I would post in the various sub-types of forum (evenings were about food, day time about distraction). Also, due to the international nature of participants, there would always be someone online to chat with when chronic insomnia meant you were wide awake at 4am. I also established roles; from ‘newbie’, to established member, to friend. At a time in my life when relationships were very challenging this was significant and valued. I understand my engagement with this occupation as being one that synthesised experiences of productivity, pleasure and restoration (Pierce, 2003) in such a way that made it very fulfilling and important to me. The pro-ED site was a perfect record of all the energy I was putting into my eating disorder – there were significant elements of productivity involved and this almost felt like the ‘office-end’ of the job – the public (but anonymous) record of my work. The pleasure came from elements of satisfaction at this productivity as well as the connections with others and the light-hearted conversations that were had (which, when in a dark, all-consuming abyss of an eating disorder, was quite remarkable). The restoration was experienced as it was a place of acceptance of, and occasionally peace with, the chaotic world I was living in. I did not have to hide the life I was living (I use the term loosely), I could be me – someone in the grips of a very serious eating disorder.

I hope this post provides a little more insight into what the experience of engaging in pro-ED sites was really like, for me at least. I think the image portrayed in the media is very short-sighted and the problem is much more complex than described.I honestly don’t know what the answer is, but I think it might need to be the ‘question’ that is reconsidered first.

Reference

Pierce, D (2003). Occupation by Design, Building Therapeutic Power. Philadelphia: F.A. Davis Company.

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The ‘Perfect’ Recovery

wisdom-92901_640I usually fiercely deny that I am a perfectionist about anything, because my self-expectations are often much lower than people assume, however I’ve recently realised how much pressure I was putting on myself to have the perfect recovery.

‘Recovery’ is a pretty contentious term, and I suppose one that I hadn’t given sufficient thought to. I suspect it’s something that each person will have their own definition of, from a life totally free of symptoms, to something  more akin to a life that allows a satisfactory level of function for that person. As for what I thought, and perhaps what I now think, well, that’s the purpose of this blog post.

When I completed my time at a therapeutic community (TC) I was very worried about my ability to keep on making the level of progress I had made over the preceding twelve months. I was scared that without the high level of support a TC provides that I wouldn’t be able to cope with difficult emotions without using self-harm or an eating disorder to manage. I also believed that if I slipped at any way at all I wouldn’t be able to get back up. However, as I’ve discussed in previous blog posts , having meaningful occupations to engage with was central to my continued recovery and my progress actually continued quite quickly to a point where I felt I was ‘recovered’. It had been months since I could have been diagnosed with Borderline Personality Disorder (BPD), and while I still had some ‘symptoms’ (I had problems with dissociation and a poor sleep pattern) I was managing a very different life and one I was very happy with – in fact I felt I’d achieved the oft quoted ‘life worth living’ that Dialectical Behavioural Therapy aims to facilitate. I also felt very sure that that could be maintained with a life full of occupations that fulfilled and empowered me, as well as providing challenge, fun and restoration.

When I commenced my training to become an occupational therapist just over two years ago I know I felt I had something to prove. While my university have never been anything other than supportive and accommodating, I had a huge internal motivation to complete my course without any adjustments or help. I felt I needed to be perfect, not in terms of academic achievements, but in terms of health. During my second year I realised I wasn’t superhuman and had to accept some support to allow me to complete my placements in a way that allowed for a continuing poor sleep pattern and to attend ongoing therapy, but still I was determined that so long as all my assignments were completed without extensions then I was still doing ‘OK’. Did I still feel ‘recovered’ at this time. Yes, I think so.

In the Autumn third year began. After a long summer and my time in Moldova I had changed quite a lot and I initially struggled to adjust back to university life. But soon I was enjoying the work and the opportunity to have much more autonomy and independence in my studies, rather than completing the heavily structured modules we had in the first two years. And then I crashed. My mood dipped and I found it very difficult to engage in any of the occupations that kept me healthy and functioning. Apparent competence meant that I put on a reasonable ‘show’ of being ok to those around me, but I wasn’t. I ended up taking a few weeks off university and am now just returning to my studies. I now will be breaking my own ‘no extensions’ rule, and surprisingly it feels OK. This happened because I began to understand that I didn’t have to have a perfect recovery. I had felt that my history of BPD meant I had to prove I was 100% ‘fixed’  (this was an entirely internal feeling and not imposed by anyone else) but with the support (and most importantly acceptance) received from university tutors I suddenly realised that it was ‘OK’ to ‘not be OK’, and in doing so I began to get back towards feeling recovered.

So, for me, what is recovery? I seem to have a definition that doesn’t relate to being free of symptoms (for me some symptoms are acceptable – poor sleep or trauma-related problems, while eating-disordered behaviour, persistent low mood or self-harm would not be), but rather one that involves the level to which I can participate in the occupations I wish to. My ‘norm’ is being tired and having variable emotions related to past experiences, but so long as I can motivate myself to row, attend university and complete necessary work, look after my flat and my own self-care then I feel things are fine. When I can’t manage those things I don’t feel recovered.

I suppose this understanding is unsurprising from someone who studies the value of occupation in improving health but I’m not sure I’d been aware of how much I used occupation as a marker of health before. I had previously believed I needed to have a perfect recovery, but now understand it’s OK if it’s not always a straight path. I used to feel terrified of ‘losing’ valued occupations through low mood, lack of enjoyment or motivation but now realise that my ‘occupational health’ may dip and it can also be restored.