Extreme OCD. Oh.

I try to avoid self-diagnosis, I really do. In my most recent post I tied myself in lexical knots in order not to suggest that I had received a diagnosis other than the one I received ~10 years ago now: recurrent major depression with significant associated anxiety, which presents with what was described to me as a “psychotic edge”. I don’t even use the term psychotic depression, even though I’m pretty sure that is implicit in the words used to me by clinicians, because so far as I know I have never formally received that diagnosis.

I am punctilious about this, partly because I am well aware how easy it is, when glancing over lists of symptoms, to become mistakenly convinced that one is suffering from every possible malady except housemaid’s knee. (Although, actually, my knee was giving me right gyp the other night…) I’m also well aware that there is an added wrinkle added by the diagnosis I have received: it’s entirely possible that my anxiety causes me to fixate on transient symptoms that I would otherwise dismiss, and my “psychotic edge” means that I cannot complacently assume that my perceptions of my own thoughts and feelings are accurate.

(Unless you’ve been similarly afflicted, or have thought a lot about it, you can have no idea how debilitating this last is. It’s impossible to know your thoughts are warped until they stop being warped. Take the couple of weeks last winter I spent convinced that Vladimir Putin was sending agents to assassinate me. It was only when I suddenly saw how absurd that notion was, and burst out laughing at it, that I realised it was absurd. Up until then, all I knew is that my anxiety levels were very high – as I suspect yours would be if a man with a large network of international covert operatives was trying to kill you. The upshot is that you end up having to constantly doubt your own sanity, which is… not pleasant.)

Anyway, I am, as I say, careful to avoid self-diagnosis. But this doesn’t mean that I am able to avoid reaching informal conclusions on the basis of information I come across – it’s an unavoidably human trait. I had reason to become aware of this when I was watching Extreme OCD Camp on the iPlayer the other night. The series (there’s a second part, which I haven’t watched yet) follows a group of young people suffering with different aspects of Obsessive Compulsive Disorder as they attend an “extreme” form of treatment at a remote camp in Washington State, in the far North West of the USA.

Don’t panic. This isn’t going to be another of my dull as ditchwater TV reviews. I don’t have much to say about the programme per se – it was well-made and informative, it didn’t feel exploitative, the men leading the camp were kindness personified, and (given that I’ve only seen one episode, so they’re only part way through the treatment regime) the participants seem genuinely to be benefiting. I want to write instead about the remarkable similarities I perceived between the thought patterns and behaviour of the participants – who were described as suffering from serious OCD – and my own.

The most obvious parallel was with a participant called Jack Pridmore, who has contamination OCD. (I didn’t realise, until I watched this programme, that the different types of obsession within OCD are formally recognised as different subtypes of the condition.) Like him, I have a horror of infection, and of touching – and especially eating or drinking – things that have been contaminated with bacteria and viruses. I don’t follow precisely the same rituals (compulsive patterns of behaviour), but the parallels are extensive.

Except for alcoholic drinks (which I think of as automatically ‘clean’, thanks to the antiseptic properties of alcohol), I haven’t eaten or drunk anything outside the four walls of my flat in five years; I haven’t eaten or drunk anything I haven’t prepared myself (and therefore known to be ‘safe’) in more than 10 years. I have a particular pattern of hand- and face-washing (involving three different soaps, two different towels, and timed periods of waiting) that I have to follow in order to feel ‘clean’ after performing certain actions, and the thought of not completing them makes me feel deeply anxious. I will throw food away and go hungry rather than eat it if my set way of preparing it has gone wrong – if I have, for example, accidentally brushed the rim of the plate with a finger that has not been through the correct sequence of hand washing.

One of the really eye-opening things about the programme – besides seeing someone else with strikingly similar issues to me – was that his OCD was routinely referred to as serious and severe, by himself and by mental health professionals. It would be fair to say that I have been aware for a while that my fear of contamination, and the measures I take to manage the fear, are somewhat unusual. I have thought of myself as being “a bit OCD-ish” for a while, but I have always assumed I was well within the range of normal behaviour, and so not actually affected by OCD. So it took me back a bit to see someone who appeared in some ways perhaps to be less seriously affected than me described as having not just OCD, but particularly bad OCD. (For example, Jack Pridmore was able, even before beginning the camp, to eat in a restaurant, provided he was able to use his own disposable cutlery; that would currently be impossible for me, because the act of taking the cutlery out of my flat would lead to me thinking of them as ‘contaminated’ – along with the plate, and the food.)

The truth is I have not thought of this behaviour of mine as OCD (and of course it may not be OCD; all those caveats about self-diagnosis continue to apply). I have thought of it as simply an aspect of my anxiety. I have an intense fear of getting sick (the term emetophobia has come up now and again in consultations with MH professionals though, again, no formal diagnosis has been made). That fear means that I’m powerfully motivated to avoid anything that might make me ill, and that in turn had led to the development of particular sets of actions which allow me to feel that I have done what I can to protect myself. Because those patterns of behaviour make me feel better – and not following them to the letter triggers feelings of dread and, sometimes, panic attacks – they have become, over time, comforting routines that allow me to function.

In other words, I had seen the anxiety as the dominant strand in my behaviour, and the various behaviours which have sprung up around it as quasi-rational efforts at comforting myself. So that meant it has also been quite eye-opening, in the process of writing this post, to read the article written by the psychologist who co-led the camp featured in the programme, in which he describes OCD as ‘an anxiety disorder’. I guess, because of the name, I had thought of OCD in terms of obsession and compulsion, and not about what lay behind the formation of the obsessions.

To be honest, I would still tend not to see my behaviour through the lens of OCD. I still think of my routines as things I like to do (in order to avoid unpleasant feelings) rather than things I have to do, which for me means they ought not be classed as compulsions. (Although I will admit that when there are lots of stories about seasonal winter illnesses in the news, the hand and face cleaning after leaving the flat do feel pretty much compulsory.) I also prefer to think of my routines as a means of coping with the real problem (the underlying anxiety) rather than a problem in their own right.

That said, this programme has made me focus on the fact that the whole thing combined – the anxiety, and the steps I take to avoid it – is having a major impact on my life. One of the reasons I live my weird, hermit-like existence (besides the fact that I am frequently too depressed to socialise) is that many of the ways of breaking my isolation would involve triggering my anxiety. It’s hard not to seem rude when you tell people you don’t want to hug them, or even shake their hand, because they’re large vats of simmering pathogens.

This post doesn’t have a conclusion. OCD still feels like a bad fit to me, a too-serious and too-specific label for a bunch of loosely related anxieties, and the methods I’ve developed to dampen them down. That article by the psychologist I linked to earlier suggests that ‘most people with OCD develop symptoms during childhood or their teenage years’, and these kinds of feelings weren’t among the smorgasbord of symptoms I was treated for as an adolescent – they built up, gradually, during my 30s. So I’m not sure that I even believe myself that I might have OCD, despite the apparent similarities.

Even if I did think that I might, I’m not sure what next steps that would indicate. The obvious next step would be to seek a professional opinion on whether I do or do not have OCD, but I don’t see much point in pursuing a diagnosis simply for its own sake. And, judging by the TV show, there is no treatment for OCD, as such – people just have to learn to confront their fears, and develop strategies for controlling the anxiety. Well, I already do confront my anxieties, constantly – it’s a daily struggle to persuade myself to eat and drink things which may have been contaminated before I got them back home. As for strategies to manage them, well, that’s where the hand-washing routines and all the rest of it come in: it would seem eccentric to seek treatment to eradicate techniques that have proven to be an effective way of managing my anxiety.

It’s not as though, absent my anti-infection routines, my life would be transformed into a normal one. I’d still be chronically depressed, and savagely anxious (my infection-related anxieties are the tip of a major iceberg), and required to wrestle every few months with my “psychotic edge”. Even if I did reacquire the ability to take a swig from a bottle of water in a public place, I’d still lead a constrained life – it would just be constrained for other reasons, that’s all.

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One Response to Extreme OCD. Oh.

  1. eliana says:

    Whether it’s OCD or not, and personally I find that self-diagnosis is quite often spot on and even my GP asks my opinion as to what I think is going on. It sounds like it is seriously affecting your life (I confess I have problems reading, so kind of skimmed), but that is how it looks.

    Which I guess leads to the question, what do you want to do about it? And nothing is a viable answer, but it might be worth considering what types of treatment, or response is out there and ask if any are worth pursuing for an easier life. I have no idea either what is out there, beyond talking to a GP, presumably there are peer support groups, different kinds of therapy, exposure style tasks whether on your own, or with support. I’d recommend just googling and seeing what appeals. As you say, that camp helped those people (it was actually nice to watch), so there are things out there which can, if not take it away entirely, make it so you are more in control…

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