Ariane Sherine writes for The Guardian and New Humanist magazine, and is lead singer in comedy pop group The Lovely Electric. She has had OCD for nine years, and takes the drug clomipramine for it, which she finds helpful. She is always willing to help anyone with OCD, and can be reached through her website, www.arianesherine.com. She is on Twitter as @ArianeSherine. You can download her free e-book “Give , how to be happy” here.
Last week, the comedian Jason Manford posted the following on Facebook and Twitter: “Tidier-upper wanted at Legoland Trafford Centre. Would suit someone with OCD.” It was clearly a well-intentioned joke, and Manford is by all accounts a lovely guy – but even as a comedy writer, I didn’t find it funny. Because, you see, OCD has little to do with order, symmetry and perfection. It isn’t about media stereotypes, and has little to do with washing your hands, or having things “just so”. It is about dark, distressing thoughts that destroy your mental health and force you to take unnecessary actions to prevent harm occurring. It is a serious illness, ranked by the World Health Organisation as one of the ten most debilitating in existence.
Mark Twain once wrote “I’ve been through some terrible things in my life, some of which actually happened.” Having OCD means going through terrible things mentally every day – and the fact that none of them actually happen doesn’t make life any easier, because the fear of them happening is so great. Imagine your worst fear – something horrifying happening to you or your loved ones – and then imagine that this situation is imminent, and you could take actions to stop it from occurring. That is why people with OCD carry out rituals – not because they’re anally retentive perfectionists or uncommonly hygienic, but because they are afraid that something appalling will happen to them or those they care about, and that they alone have the power to prevent it. In truth, most people have inappropriate thoughts, but people with OCD are unable to dismiss them.
To give a few examples: people with contamination OCD often wash their hands repeatedly not because they want to be ultra-clean, but because they are afraid that if they don’t, they will contract a life-threatening illness, and possibly pass on this illness to their loved ones. Sufferers who drive are often terrified that they have hit someone with their car without realising – to them, every pothole or bump in the road is a dead body, and so they retrace their steps and look out for police reports of traffic accidents, scared that they are responsible for pedestrians’ deaths. And the OCD-suffering teacher Cubby in JK Rowling’s novel The Casual Vacancy – written after she experienced OCD herself – perpetually clutches his folders to his chest as he is terrified of molesting his students. His adopted son then informs the local community that his father’s fears must have some basis in truth.
And that’s the crux of OCD – because it is so misunderstood, people rarely talk about their most terrible fears, in case others think they are true and that the sufferer is capable of causing harm. “We receive calls to our helpline from people who are scared of killing their kids,” Joel Rose, director of OCD Action, told me. They are willing to admit this fear anonymously to a helpline, knowing they will be understood – but few feel able to admit it to their doctor. What parent would want that fear, or the fear of committing paedophilia, on their medical record? People without OCD, even medical professionals, rarely understand the turmoil these thoughts cause, and that they are the absolute last thing an OCD sufferer would act on. I once confessed to a group of non-OCD sufferers that I was scared of going to a performance in case I shouted out offensive and shocking things, only for one of them to ask “Why, is that what you usually do?” And I found it hard to explain that no, these fears are entirely without foundation.
Perhaps the reason people think about OCD as a disorder about “handwashing and checking” is that these are the only fears people feel able to admit to. When I went to the doctor to ask for the OCD drug clomipramine, I felt unable to confess my darkest thoughts, and only told them about my contamination fears. Because not only are these fears more “acceptable”, the medical community is well aware of them being a manifestation of OCD. My fear of setting the house on fire in my sleep is also OCD, and troubled me far more – every day I would think “is this the day I’ll do it?”, and be terrified of going to sleep – but because many medical professionals don’t properly understand OCD, the likelihood of this fear being recognised as OCD was more remote, and I didn’t want the doctor to think I had intrusive thoughts about causing harm.
Now I am stable on clomipramine (a tricyclic OCD drug invented in the 1960s which is out of patent and hence not prescribed so much anymore) I feel more able to talk about my fears. But I am routinely told by friends and family members “Of course you won’t sleepwalk, don’t be silly!”, as though this dismissal is all my brain needs to be able to reject the idea. It is difficult to be in a relationship with someone with OCD – part of the reason my relationship with my daughter’s father broke down was the complex series of locking rituals I would ask him to carry out each night before going to bed, and my repeated requests for him to reassure me about my contamination fears. Since our split, my OCD has improved (it worsens when I am in a relationship) and I no longer fear going to sleep, but the irrational thoughts are always present – I will often be having a drink with someone and think “I could throw my drink in their face”, or be near an open window on the fifth floor of a building and think “I could jump out”. (I have never wanted to admit to the latter type of thought because I worried that, if I had an accident, people would think it was a suicide. I love my life, despite the thoughts, and would never want to die.)
The causes of OCD are disputed, as is the prognosis. My OCD started in 2005 after I was violently attacked by my boyfriend while pregnant, but an earlier rape, constant bullying and a violent childhood most likely set the groundwork for an anxiety disorder to take hold. I am now on three drugs for anxiety, OCD and paranoia. However, along with environmental causes, it is also thought that OCD could be caused by something as common as a sore throat. Whatever its origins, it is a disorder characterised by fear and shame – and, because it is so misunderstood, the average person takes 14 years to seek help for it. In addition, because there are as many potential obsessions as there are individuals, many sufferers who seek information about OCD in books and don’t find their own obsession there assume that their particular fear is not OCD.
I have read about OCD sufferers who, before finding out the truth about their OCD, thought their fears of committing paedophilia meant they were evil. In actual fact, OCD thoughts are “ego dystonic”, which means they are the opposite of the person’s true nature. So the loving parent fears harming or abusing their child, the tolerant liberal fears racially abusing someone of an ethnic minority, the conscientious driver fears hitting a pedestrian. If you know someone struggling with intrusive thoughts like these, please tell them that they are not at fault, and that the very fact that these thoughts bother them means that they are incapable of acting on them. People with OCD never act on their thoughts.
So is making jokes about OCD always taboo? Not at all, as long as they are made by someone who truly understands the illness. I love the wry quip “thoughts don’t come true – if they did, people with OCD would be in demand as assassins”. I also remember an exasperated poster on a message board responding to an sufferer with ‘false memory OCD’ who worried that they had committed a murder and forgotten: “For heaven’s sake, if you’d committed a murder, you’d be busy hiding the body – you wouldn’t be going on an OCD message board asking whether or not you’d done it!” Put simply, if you’re “in the club” – that is, you either have OCD, or work or live with people who have the disorder – you get to make jokes about it. If you’re not familiar with OCD, you’ll probably misrepresent it with inaccurate stereotypes, and unwittingly contribute to the 14-year gap between onset and diagnosis.