OCD awareness week

This week is OCD awareness week, and if I’m brave enough, I might just post this thing that I’m writing.

When I was 18 I developed OCD. I was never told as such by a doctor because I was too embarrassed to tell anyone about it, but there can’t really be any other name for the endlessly ridiculous and repetitive routines that kept me up each night, and the horrible, crippling fear that if I didn’t get things just right then something earth-shatteringly bad would happen, a bolt of lightning from nowhere that would wreck my life irrevocably, death, disease, grief.

I feel I should say right now that on the spectrum of severity my experience was never as bad as that of many, many others. And in the end I was able to suppress, overcome it on my own, and get off relatively scott-free.  But that’s not to say it wasn’t real, or horrible, or that it’s not something that I will carry with my for the rest of my life.

The most awful thing about it for me was the other side of my brain -the relatively sane part, that looked on as I straightened angles and did everything I could to avoid the number three or its multiples – that could see quite clearly how very stupid it all was. Did I think that I was that fucking important, that what I did had such an effect on the world that if I didn’t fold my t-shirt just so that it could butterfly-effect out into the world, make any kind of difference? At it’s worst I was telling myself to look at a specific spot on the wall and think a certain thought as I did it, the skewed but irresistible logic that things were okay today, so if I did everything the same as last night then tomorrow would be okay too. Nothing bad would happen to me, or the people I loved. No death, no disease, no grief.

No. There’s no way you can do that and not know how stupid it is. I felt like I was going crazy, felt myself losing my grip on my own mind – do you know how frightening that is? To know you’re falling and be unable to stop yourself? It made it all the worse, to know how ridiculous it all was. But the fear was too strong: feeling stupid each night was a price I was willing to pay to avoid all the bad things my troubled mind could dream up.

Looking back on it now it seems pretty simple: teenage hormones, exams and the pressure I’ve always put on myself to do well, a year into a chronic, idiopathic (as in: no cause, no cure) immune system disorder, a sudden suicide in the family and the resulting fallout. I had no control over my life whatsoever, and I think this was the way my brain tried to take control. It was trying to help, really – it only wanted to show me that I didn’t have to just let things happen to me anymore. I just wish it had chosen a better way.

And then…life sort of happened. Travelling, university. Suddenly I was able to actually make decisions and take actions in my life, take back some of that control. I don’t think I’ve ever dealt well with feeling trapped or stunted in whatever situation I’m in, and it’s only while looking back, right now, that I can see that I’ve gone a bit weird every time I was ready to move on to something but was being held back the constraints of age or the school system or life.

Also, it was very hard to keep up any kind of routine whilst backpacking around New Zealand on a gap year. So that sort of saved me.

Now my OCD has receded into strong yet minor superstitions: I’m still deeply suspicious of things that come in threes, when I lock the door I have to take special notice and file that memory away so that I can prove to myself later than I actually did it, I have my little tics and routines for things that scare me, like plane journeys. Some actually make me laugh now (I have the overwhelming desire to clap along to the clappy bit in the Friends theme tune every time it’s on tv – which is a lot – even when I’m mid-conversation with someone) – but I don’t feel like something bad will happen if I don’t. Clap along to the Friends theme tune. God – see how stupid it all is?!

And now I feel lucky – that I’ve come out the other side, and that it wasn’t any worse than it was, because, Christ, it could of been. Reasserting some kind of control over your life comes in all sorts of terrible guises, voices that make you want to starve yourself, hurt yourself. It can even be so very much worse, considering that my experience with OCD, as upsetting and stupid and horrible as it was, was fairly minor. I feel very lucky.

Occasionally these days I’ll mention I “was a little bit OCD” when I was younger, which I think people who have no understanding of it are happy to gloss over as someone who likes to pop back and check the oven isn’t on, or likes to keep things clean and tidy. The idea of someone walking down the road and having to go back, six, seven times to check that the oven is off because they don’t trust their own mind or memories anymore, or stays up all night cleaning because they can almost see the bacteria everywhere, can feel it on their hands even when they’ve scrubbed them raw – this sort of thing probably doesn’t occur to them.

But really, I don’t think I’ve ever told anyone, not even my parents, who I pretty much tell everything to. I thought that they’d think it was their fault. They would have taken me to the doctors – my local, small-town Welsh GP – and I would invariably have been prescribed more pills, on top of the ones I was taking for my auto-immune disorder. The thing about OCD is that you don’t trust your own mind anymore. It’s not just the thought that you left the oven on, but maybe you left the oven on, the gas burning, and a lit candle nearby. You don’t think you did, but you can’t remember not, so can you really say, with 100% certainty that you didn’t? More medication would have made me feel less in touch with my own brain, less in control. I knew that wasn’t what would help me.

But ultimately I didn’t tell my parents, or anyone, because I was deeply ashamed.

But. But. It’s OCD awareness week. And if I’d read something like this when I was 18 I wouldn’t have felt quite so fucking alone. So. There it all is.

http://www.ocduk.org/ocd

*Edit, one year later:

So. I read The Woman Who Thought Too Much by the fabulous Joanne Limburg, who I’d followed for some time on twitter, and whose book I read after she contacted me about this blog post to share her experience.

I can’t tell you how life-changing it was to read someone else’s experience (and a fairly severe one at that) with OCD, to face head-on the thing that I’d been trying to keep in the corner of my eye for so long because it sure as hell wasn’t going anywhere, and the best I could hope for was to never look at it directly, or think about it too much.

Joanne Limburg’s book explains that those who suffer from OCD are usually the people who feel responsible for the world, the people who are often marked by characteristics like responsibility, excessive empathy. They are the people least likely to break the rules, to do something bad or forget that they didn’t lock the door, or to leave the oven on and leave the house.

When I read this I realised that these qualities – responsibility, empathy, kindness, social awareness – are the ones that I like the most in myself, the things that I work hard to earn because they are the way I want to live my life. They are the parts of myself that I’m proud of, even if they can sometimes make me naive, anxious, or an easy target for people to use as a doormat – and, as it turns out, an easy target for mental health issues too.

These things are a part of me, good and bad. The more I understand it the more I can accept it, and control it, and stop feeling ashamed.

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