Thoughts from the NEDA conference …

I wanted to write an eloquent and insightful post about the NEDA conference that I went to in New York, but I fear that I will be waiting a long time. Words are not stringing themselves together in the way that I’d like them to at the moment (which is a whole ‘nother post) and I am beginning to suspect that I may be over-complicating some of the relatively clear messages that I took from the conference. I have a habit of doing this.

Before I rip them – and myself – to shreds, I’m going to write down a few of the things that particularly stood out for me in two days that were full of information, and sharing, and caring, and all the things that I isolated myself from, both during my illness and, during my equally stubborn and internalised recovery –

1. You don’t have to do it alone

I had my first treatment for anorexia in 1993. Things were very different then. With limited understanding and some practices that wouldn’t stand up now, the ‘me Vs them’ model that eating disorders (EDs) are great at creating was given a good dose of unnecessary ammunition that took a long time to shift…

The NEDA conference, like the Beat ceremony the week before, was full of professionals, and carers, and those directly and indirectly affected by EDs, all coming together to help raise awareness and support people in their fight to get well. It was a joint event, on an equal footing, characterised by empathy and compassion rather than anger or blame.

I know that things are complicated. That there are financial considerations, and some outdated assumptions, and a huge deficit in support for men – but I got a real sense of collaboration that has to come to a more positive end.

2. Patience

A lot of this joint effort seemed to hinge on the recognition that recovering from an eating disorder is a slow process. That it doesn’t happen overnight, nor come immediately when the symptoms change or weight is restored. It requires, instead, a level of patience, a word that doesn’t roll particularly easily off my tongue -

Patience in waiting for the discomfort of change to gradually lessen.

Patience in learning that you can overcome challenges which seem insurmountable and innumerable.

Patience in catching up with experience and emotions and relationships and all the corners of a life that an eating disorder manages to get stuck in.

Patience in starting to trust others again –

Patience in them trusting you –

3. The other people

NEDA was honest and open, and it really made me consider how difficult it is for all those who are impacted by EDs; the family, friends and even professionals who also come to live under the shadow of an ED.

When you’re immersed, it’s impossible to realise the impact you are having on those around you or it was for me, anyway. Yes, I knew that I was causing worry; I felt terrible about pulling other people into the ED’s games and, yes, it certainly impacted on my home life and environment…but, I wasn’t quite able to translate this awareness into action, and I prized the eating disorder above everything else.

During the conference, I heard parents speak about their children; siblings, about the pain of not being able to save a sister or brother; and partners talk about how devastating the eating disorder was to watch -

It is hard seeing it from the other perspectives and difficult to resist the temptation to slide into guilt….but this is why the joint effort is so incredibly important; and why it makes knowing what we’re dealing with so key.

4. The science

I am not scientifically minded. I kind of see how it all fits together, but I have to concentrate very very hard. There’s lots of research coming out at the moment which even non-scientifically minded people like me can’t miss. It’s about understanding some of the neurological research and patterns; and also exploring how people are affected by eating disorder behaviours in cognition and things other than weight.

It sounds like we’re getting nearer to gaining a more comprehensive (body, brain, mind, context) take on what goes on.

I don’t think there was one cause for my eating disorder, nor that it will be possible to understand fully why I became so ill – but each little piece helps to make a bit more sense of the experience and the understanding helps me to move on.

5. Moving on

The ‘in recovery’ or ‘recovered’ question also came up a lot for me at the conference. I don’t know whether there’s an answer for this one: whether being ‘in recovery’ drags it out and keeps it present; or if it’s a realistic description given how quickly an ED can reassert itself, and how hard it is to transform some of the traits that can impact on its development.

For me, the conference was about recognising how far I have come – but also noticing the areas where my sensitivity is still high and acknowledging that I haven’t quite reached a resolution on some of the themes that were raised –

Like body image and self acceptance (because it’s not all about that, but the culture we live in makes the context hard) -

And relationships and emotional maturity (because I’m still catching up there).

It was also about acknowledging that I have moved on in relation to my own self perception. That, increasingly, I am able to separate myself out from the ED that I once saw as my character and identity; that I was attending the conference, not just as a recovering sufferer, but as a person.

This might not make sense, but it’s a mammoth move for me.

It’s a mammoth move for me, and one that wouldn’t have happened without all the treatment and support I received. This was my other message: the work that still needs to go on.

6. The reality

The NEDA conference was the second time in the space of a month that I have realised how lucky I was to survive and how fatal eating disorders are. I don’t know the exact figures, but every time I hear them, they seem to get worse; and every wasted life winds me.

I think things are moving in the right direction, but I hope they’re moving fast enough.

I also hope that some of the barriers that still exist (healthcare costs or insufficient treatment provision; a lack of awareness around different types of eating disorders), and the things that make it harder (the complexity of the body image / media / ED / self esteem relationships; the female focused language) start to shift – because fighting an eating disorder is not an easy battle for anyone to win.

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2 Responses to “Thoughts from the NEDA conference …”

  1. Thank you for reporting back on the stuff that happened at NEDA :-)

    The bit that stands out for me is the bit about recovery. I’m quite loud about the fact that recovery isn’t the best word to describe it, IMO. I see is as moving forward – something we keep on doing, and something we’d be doing anyway ED or not, but that part of this is keeping the issues we have with food/feelings/confidence etc. under check so we can keep improving and feel happier.

    I’d see it as not in recovery or recovered, but as living in awareness, I suppose.

  2. James says:

    There’s so much interesting, thought-provoking and touching stuff in here so thanks for putting down your thoughts, Issa.

    I personally agree with GirlUndiscovered that ‘recovery’ as a kind of model isn’t very helpful to me personally BUT for others it can definitely be. That’s the point – everybody is different and beating eating disorders needs to be done on different levels depending on the individual because they are so complex and diverse.

    That’s all part of the huge struggle in treating them and raising awareness. There are so many misconceptions and difficulties but I think we can take hope from the progress that has been made and things like the NEDA conference. In spite of all the difficulties, there is a collective will and brilliant work being done. Ultimately it does come down to the fact that eating disorders are conditions that thrive on isolation and so to know that you aren’t alone is reassuring.

    Thanks for the beautiful, eloquent and insightful report Melissa. :)