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OCD is among the ten most debilitating health conditions yet patients are often misdiagnosed

One sunny morning in 2012, I was at my GP for the third time in a week, sobbing and begging to be referred for urgent neurological tests. “I’m losing my memory,” I explained. I couldn’t remember what “Argonaut” or what “obstreperous” meant, so that was it for remembering anything at all. I’d Googled “memory loss” and learned that at 27, I was too young for Alzheimer’s. So it must be vCJD, the horrifying “mad cow disease” that had hit the headlines in the 1990s. I was headed for an agonising death.

I decided that if I could learn five new words a day and remember everything I’d eaten, then I could prove that I wasn’t ill. That’s how I spent the next six months; reading the dictionary and endlessly going over last week’s meals. I’d repeat my new words, check that every meal was accounted for, and feel reassured. But only for minutes, seconds, then the horrors would come back. Was it one egg or two last Wednesday? What does “disingenuous” mean? You’re going to die. You’re going to die. The cycle started over and went on for half a year. This wasn’t the first time I’d suffered from debilitating levels of stress. I’d also had episodes of anxiety and had had strange obsessions in my late teens and early twenties. I just assumed everyone was like that, but with the apparent memory loss, it felt more severe, less normal.

What I didn’t know at that time was that I have obsessive compulsive disorder, or OCD. In many people’s eyes, OCD is a personality quirk: it’s a lining up of shoes, an intolerance to wonky picture frames, antibacterial hand wash. But OCD is much worse than that. For the 740,000 sufferers in the UK alone, it can be utterly dreadful. The World Health Organisation lists OCD among the ten most debilitating health conditions. But it’s not just the general public who often don’t understand; there’s a surprising lack of awareness among medical professionals too.

OCD is two things: obsessions and compulsions. Obsessions are intrusive thoughts like my “I’m dying of vCJD”. Other typical OCD thoughts include contamination fears (“I’m going to get infected”), violent harm (“I’m going to stab my husband while making dinner”), inappropriate sexual thoughts (“I want to have sex with my sister”), religious fears (“I might accidentally say 666 and the Devil will appear”), and so on. The thoughts are terrifying and unwelcome. Compulsions are what an OCD sufferer does to escape or neutralise the anxiety that comes with the thoughts. A man with contamination fears might scrub his hands, again and again and again. He might then stay indoors all day, scrubbing, using bleach, his hands skinless and raw. Isolation and depression follow. People with OCD are ten times likely to kill themselves than non-sufferers.

Of course, most people have random thoughts about illness, sex or violence from time to time, but can easily shrug them off. The OCD sufferer can’t. Imagine every alarm and sprinkler in an office block going off at once just because somebody on the sixth floor boiled a kettle. The problem isn’t the content of the thoughts – it’s the extreme anxiety experienced in reaction to them.

So what’s the answer? Evidence shows that the most effective treatment is anti-depressant medication combined with a specific type of cognitive behavioural therapy (CBT) called ERP (Exposure and Response Prevention). (See this article by the International OCD Foundation for more information). In conventional CBT, a patient might challenge their thinking by finding evidence that contradicts their fears. Other approaches might encourage patients to seek the root causes of their fears, developed by Freud. ERP is different – it largely disregards the content of obsessions and aims to reduce the suffering that they cause. ERP, for example, would help a patient face his fears about infection, and encourage him to not wash his hands until his anxiety subsided. A lady terrified that she might murder her husband might be given a knife and told to hang on to it until “habituation” occurred. I read somewhere that ERP is the only therapy that involves giving weapons to the mentally ill. Saying this, I must stress that people with OCD are no more likely to act on their intrusive thoughts than anybody else.

Worryingly, there are countless stories of people with OCD being misdiagnosed and spending years chasing their thoughts down rabbit holes, getting heavily medicated or sedated. People can take ten years or more to be correctly diagnosed and get the right treatment. I suffer from a type of OCD nicknamed “pure-O” because it lacks obvious behavioural compulsions. My rituals and reassurance-seeking take place mostly in my head, in the form of checking, counting, analysing and ruminating. I was once diagnosed with schizoaffective disorder because, in the psychiatrist’s words, I looked “too normal to have OCD”. Steven, an OCD sufferer from Australia, told an online support group that he spent months in psychoanalysis to get to the root of his violent thoughts which led him to develop severe depression, eventually being admitted into hospital. He says, “the psychoanalysis encouraged a kind of thinking which is highly obsessional in nature – relentless doubt and rumination, a constant probing of thoughts.” As Rose Bretécher points out in her ground-breaking 2013 Guardian article about the pure-O type of OCD, psychoanalysis only makes obsessive thoughts more deeply entrenched. Years later, Steven is back at work and using ERP techniques to manage his anxiety.

It seems to me that OCD is over-diagnosed in the lay population and under-diagnosed in the medical. That being said, the portrayal of OCD in the media is improving. Bretécher’s brilliant autobiography Pure is being made into a Channel 4 series, and Lily Bailey, another OCD sufferer who has “come out” on social media, has published her own harrowing memoir, Because We Are Bad: OCD and a Girl Lost in Thought. Let’s hope that awareness increases, not only in the medical profession, but everywhere else. Meanwhile, if you haven’t got OCD, be glad, and be grateful. Gently reprimand anyone who says “I’m a bit OCD” because they like their kitchen tidy. If you think that you or a loved one might have OCD, make sure you’re getting the right help, educate yourself, and don’t spend months or years in misery with the wrong treatment when freedom and wellness could be much closer at hand.

Image from here