A reluctant activist

Oops sorry, I posted this last night but must have done something weird when I edited it because it had disappeared by this morning! Hopefully it will stay here this time 😛 I shouldn’t blog when I’m tired, heh.

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So, EDA week is now over and I can breathe a minor sigh of relief. Only minor, because recently I have begun to get more involved with online discussions, education and outreach work alongside UK members of an international organisation for carers of people with EDs, and I also have another school talk and other ideas lined up with the ED charity I volunteer for.

I’ve noticed before that people in recovery tend to fall into two camps – those who want to get as far away as possible from any continued link to eating disorders and those who want to help other people recover through volunteering or training as a nutritionist or therapist. I’ve read some snarky comments and genuine concerns about the pros and cons of these two different approaches, and before I went away to Manchester I was thinking quite a bit about this.

There are two main reasons why I’ve gone down this route rather than cutting all ties. First of all, this might be arrogant of me, but I like to think that I can be helpful. I’ve certainly been told that input from recovered people is very useful from the ED charity management committee, the people who have organised the talks I’ve done and the members of Feast that I’ve spoken to. I also hope that I might be giving a bit of hope to people who are ill. I don’t think I can save the world and I don’t think eating disorders are entirely preventable – I think they would continue to exist even if our culture was entirely different and everyone had a good understanding of the signs, symptoms, causes and recovery. But I also think that myths contribute to stigma which can stop people from getting the help and support they need, and that can lead to them staying ill. So whilst I don’t think that the tragic-life-story-esque nature of some articles which tend to appear during EDA week is helpful at all, I do think that awareness and education can make a difference. And I very much WANT to make a difference if I possibly can, because eating disorders keep fucking up and occasionally killing people I care about.

The other reason is rather less noble and more of a grey area. After being crazy in various ways for so freaking long I have a ridiculous amount of knowledge and understanding of mental health issues. It is something that sets me apart from other people, something I’m good at, and something which makes me potentially valuable to society, and I can’t say that of anything else. I am also fairly good at drawing, poi and making cakes (!), but I don’t have the motivation, confidence or passion to make a career out of any of those things – I want to help people more. I feel like it would be a huge waste to never use the things I’ve learned over the years. I just want to put all those rather hellish years to good use, make something positive out of them. I’ve been trying to rebuild my life from scratch – relationships, career path, social life, all of it – and so anything helpful to those ends that I can salvage from the rubble is a big benefit. My knowledge and experience of mental health issues are examples of that.

This is where the accusations come in – that maybe people who go into ED activism or continue to blog and talk about their experiences are just doing it so they can hang on to the eating disorder, refuse to move on with their lives or revel in their past “sick” status/identity. Maybe that is the motivation for some people. I’m not in their heads, so I’m not about to go on the offensive and say that people who believe this are totally wrong. But if anyone who reads my blog thinks those things about me I am not interested in changing their minds, since they clearly can’t think a lot of me. I don’t want to hang on to my eating disorder – behaviourally it is not present in my life, and I am doing everything I can to move on from being ill for so long. I was never proud of being sick either, I was deeply ashamed of it for years, to the extent that it has only been in the last two years that I’ve been able to talk about my eating disorder to my family and friends. And I’m not someone who feels comfortable being at the centre of attention – anyone who has seen me shaking like a leaf before I get up and talk to people can testify to that. I hate confrontation and I hate disagreeing with people, it terrifies me. Most of my voluntary work so far has involved acting completely contrary to my personality. But my desire to help is stronger than my anxiety.

I believe in what I’m trying to do, and I think it’s right for me. That’s not to say that it would be right for everyone, but I’m confident that I’m making the right decisions.

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8 responses to “A reluctant activist

  1. i’ve never commented on your blog before… just wanted to say that i applaud your “reluctant” activism and your entire recovery. plus, you write really well which is quite a rare find in the blog-world.

    i’ve never had a “real” (by that i mean… blatantly obvious, can-stick-a-label-on-it, medically dangerous) eating disorder. just years of disordered eating, mainly bingeing and over-exercising. personally, i always feel terrified and almost guilty because i worry that i want attention by doing things like this, and don’t want to be somebody who does risky things just to get attention. but if i think about it, like you, i’ve hardly ever been able to talk about this. even to my closest family member i won’t even call a binge a binge, i give it a roundabout name. the one time i did bring this up to a psychologist whom i was seeing for something else, i got so panicked i almost threw up.

    sorry, hijacked comment for tangent!

    it’s great to see somebody doing things despite the anxiety they provoke.

  2. I don’t think anyone could ever level the accusation at you of wallowing in your ED past or refusing to let it go: the desire to help illustrates a level of detachment and ability to be objective to me. I know that’s with regard to others, but to me you’re unique in that you practice what you preach but are always open to new ideas and perspectives. Plus, you see the level of subjectivity involved in treating the person first, before the disorder, if that makes any sense?

    To fight EDs the world needs more people that truly understand them, and I just don’t think you can do that unless you’ve ‘been there’ yourself. There are still so many misconceptions even among so-called ‘professionals.’ And you do have a mind-blowing level of knowledge and insight when it comes to eating disorders. Not that it’s completely analogous, but I wish I could do something with my exercise obsession because it’s something that I naturally know a lot about now, rather than having to force myself to work on a subject that my brain doesn’t focus on well.

    If you’ve found your niche and your passion, then it’s the ‘right’ choice for you. Anyone that has an issue with it needs to re-examine their own past before judging yours, because such individuals would typically object to your choice due to it touching a nerve or threatening their own.

    *hugs*

    ~Jess~
    xxxx

  3. Nurse Converse

    While it it perfectly understandable, and for a lot of people the healthy thing to do, that a person would want to totally get away from anything to do with their illness, I think that often the people who have the most experience i.e. because they were there, can do the most good for the poeople who are still there. Whether that’s eating disorders, self harm, alcoholism/drug addiction, ex criminals, a mother who’s child was killed by knife crime or a drunk driver etc.

    What I would say is important is that sufficient time is left between the event and the person beginning their work to try to help. It wouldn’t do anyone any good if someone who was barely recovered began to spend a lot of time around other eating disordered people and focussing entirely on EDs again. I think you would have to make sure you were safe first before you could think about helping anyone else.

  4. I cannot imagine that anyone, on the basis of reading your posts, would suggest that you wish to remain involved with EDs for anything other than the good reasons. I, like many others, really appreciate your involvement. Your talk at York was very well received and you didn’t present as a ‘tragic life story’ at all – but rather as an articulate, intelligent young woman who had worked tremendously hard to overcome a serious illness.

    I, personally, drift between the desire to be involved in ED stuff and the desire to put it all behind me – because many years of AN prevented me from doing certain things I now want to do. However, I know that I still have to work hard to remain well, and I think there’s room for more improvement. People can take on different roles when they have experienced of an ED. I am involved in a lot of stuff ‘behing the scenes’, which for me feels ‘safer’ because I easily get overwhelmed when in social situations for too long.

  5. couple of thoughts.
    first: you’re right, you don’t have to let yourself be tarnished with the same brush as people who take part in activism because they want to retain ties to their eating disorder. to be honest, I question how long they’re able to maintain that without relapsing anyway.
    second: embrace the fact that you’re able to do this 😀 I certainly believe that I probably couldn’t, as much as I want to help I just couldn’t go ‘back there’ in my memories so frequently, it’s too scary for me as childish as that sounds :P. and as you highlighted in your post, there are probably a good proportion of recovered sufferers who feel the way I do. the world of treatment and activism needs motivated recovered people who are willing and able to help, and you can fill that space. so do it!

  6. Hi Katie,

    I am in no position to say this, but I would genuinely encourage you to somehow publish your knowledge and thoughts, perhaps, to write a book. I am not joking and certainly I am not being sarcastic. I really think that you have such a deep knowledge of eating disorders, and anorexia in particular. You hold strong views, always theoretical grounded and supported by research, and you also consider opinions which are different from yours or which you do not agree with, but you try to see where they are coming from.
    Your work with NIWE is a good starting point. I think, you can make a difference, at least to a few people.

    Judith

  7. Not that it matters a jot what I think but I feel confident you’re making the right decisions for the right reasons too. I think you are brilliant, x x x

  8. You’re amazing and no-one who reads your blog could ever think you’re trying to hold on to your ED. We need people like you. I couldn’t do activism because I’m not really recovered and if I was I’d be one of those people who wanted nothing to do with ED things. You’re brilliant and no-one questions your motivation, hell, I bloody admire it!
    xxx

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