Is OCD truly a mental illness? Some experts say yes, some say no and some say it doesn’t matter. They’re probably all correct; this area is a mass of vague terms and a mess of overlapping meanings. It’s always been that way, dating back to the eighteenth century and the Scottish physician William Cullen, who introduced the term ‘neuroses’, a broad notion that stemmed from his idea that madness reflected damage to the nervous system. By the middle of the nineteenth century, the Austrian medic and poet Baron Ernst von Feuchtersleben argued that more severe afflictions of the mind such as delusion should be promoted into a different tier, which he called the ‘psychoses’. The division stuck, despite the obvious problem that plenty of people with neuroses seemed to have a worse time than those who had the supposedly more serious psychoses. Those terms aren’t used in medicine to classify patients any more, but the replacements aren’t any clearer.
‘Mental illness’ is a catch-all but many people don’t want to be called ‘mentally ill’. OCD is not an ‘illness’ anyway, psychologists say, it is an ‘abnormality’. Some people with OCD reject the label ‘abnormal’ and prefer ‘disorder’. But ‘disorder’ and ‘illness’, according to psychiatrists, mean the same thing. It’s clear that schizophrenia is a mental illness. Yet the UK government says that one in four of its citizens will develop a ‘mental illness’ during their lifetime. That’s more than fifteen million people and to get the figures that high they have to include the big three – substance abuse, anxiety and depression − as well as OCD. Is anxiety a mental illness? Is an alcoholic mentally ill? It’s not hard to see why most charities who work in this area prefer to call it ‘mental health’.
The best representation, though still flawed, is probably to divide mental illness from severe mental illness, with this second group made up of people who lose touch with reality. That’s close to where we were more than a century ago, with neuroses and psychoses. In this book, I use the terms ‘disorder’, ‘illness’, ‘abnormality’, ‘condition’ and ‘syndrome’ as synonyms, because it introduces variation and because, as we’ve seen, it’s hard to organize them into any hierarchy. I mean none of them to be pejorative.
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Whatever we call it, it took me a long time to recognize my problem. OCD was that thing those people did when they washed their hands a lot, wasn’t it? People talked about Monica Geller from the television show Friends as having OCD because she was so uptight about cleaning and crumbs in the bed and that stuff. I didn’t think like that. I wasn’t a perfectionist. I wasn’t bothered by crumbs in the bed; I was scared that I would catch a terrible disease, which was very different. So I found it hard to accept that I had OCD and that I could be helped, even after the people on the other end of the National Aids Helpline gently suggested I should talk to a psychiatrist rather than them.
The persistent and common belief that OCD is simply an exaggerated desire for hygiene and order is not the fault of the doctors and scientists, who have been telling people it is wrong for decades. Psychologists found convincing evidence that people with OCD do not think and behave in that way in 1960, when they looked at the records of people referred to the Tavistock Clinic, a drop-in centre in London that diagnosed and treated various psychological problems. Each patient to the clinic had to answer nearly nine hundred questions on their attitudes and behaviours, and the scientists looked at the responses to those that related to obsessive and compulsive character traits, such as ‘I tend to brood for a long time over a single idea’ and ‘I take pride in having neat and tidy handwriting’. The patients had to grade them as true or false.
With a statistical technique called factor analysis, the psychologists bundled together the answers that seemed to associate with each other – to produce a picture of how someone who answered true to one question would be most likely to answer the others.
They found two separate and distinct patterns, which they labelled the A-type and the B-type. The A-type was a person more likely to fold their clothes carefully, to be thorough in everything they did and to be punctual. The B-type was someone who checked things, had bad thoughts and memorized numbers.
The B-type – described as a person whose daily life is disturbed by the intrusion of unwanted thoughts and is compelled to do things they know are unnecessary – we can recognize now as OCD. The A-type – an exceedingly systematic and methodical person, who pays much attention to detail and has a strong dislike of dirt – psychologists identify as a person with the similar-sounding, but quite different, problem of obsessive-compulsive personality disorder (OCPD).
The two are not completely separate – traits and symptoms from one can appear in someone with the other. And some people with OCPD can develop OCD – in fact, for many years it was thought that only people with obsessive personalities could develop OCD. But there is a clear difference between a person with OCPD and one with OCD. While OCD is defined by harrowing ego-dystonic ideas that clash with our sense of the sort of person we are, the thoughts of OCPD tend to be ego-syntonic – in line with one’s desires and needs − and so much easier to accept. Put another way, OCD is hell for the sufferer but, while OCPD may be hell for those close to them, the person with OCPD is usually happy to clean and tidy and takes pride in doing so.
Visit the home of someone with OCPD and not a chair or rug will be out of place. Yet people with OCD whose compulsions demand that they clean often restrict the practice to a specific room. OCD patients can have spotless toilets that sparkle with bleach next to a filthy kitchen caked with months-old food. An OCD washer who cleans his hands 200-odd times a day can wear the same underwear for weeks.
In many ways OCPD is what people mean when they use the term ‘anal personality’. Indeed, the phrase ‘anal (usually short for anally retentive) personality’ grew from Freud’s work on obsessions. Of course it did. Freud thought that children went through an ‘anal’ phase when their chief interest was their bowel movements. Unfortunately for the child, this phase coincided with the parents also taking an interest in the child’s bowel movements, and getting the child not to deposit them in their pants.
Mental conflict during this phase – sometimes just the very act of the parent interfering with how and when the child could go to the toilet − could lead to turmoil in the child’s mind, Freud said, which would resurface as personality traits that mirrored the child’s efforts to exercise power over their excrement: orderliness, stubbornness and a need for control. These were the features of Freud’s classic anal personality type; anally retentive described when these behaviour traits lingered into adulthood.
When people hear of OCD they frequently think of anal personalities and OCPD. They see towel folding and books arranged on a shelf by genre, size or alphabetical order. In September 2011 the London department store Selfridges was selling what it called an obsessive-compulsive disorder chopping board, etched with ruled lines and a protractor for perfectly sized portions. When I talked to publishers about the idea of writing this book, one suggested we put a bar of soap on the cover. People with OCD are believed to live in spotless houses and to freak out when someone sneezes on them. The cover of the book Obsessive-Compulsive Disorder for Dummies does feature a line of neatly ironed identical white shirts on their hangers. True, OCD can show itself in these ways. But it’s a selective and self-selecting picture, and one that cannot account for the intrusive thoughts that drive the behaviour.
The close similarities, at least superficially, between the way that OCD and OCPD can manifest themselves, tied with the reluctance of many people with OCD to talk about their obsessive thoughts, is one reason why even severe cases of OCD are sometimes misdiagnosed, or not diagnosed at all. Another is that OCD can be masked by other mental disorders, which frequently coexist in the same patient − depression, anxiety and eating disorders among them.
In recent years, experts in OCD have tried to educate their fellow health-care workers to this problem: some patients who report to dermatologists with constantly chapped hands, for instance, could have OCD. But, unless they are asked the correct questions, this will not be spotted. The questions are not complex. Joseph Zohar, an OCD expert in Israel, has produced a list of five that he says should help doctors and nurses screen for clinical obsessions: Do you wash or clean a lot? Do you check things a lot? Is there any thought that keeps bothering you that you would like to get rid of but can’t? Do your daily activities take a long time to finish? And are you concerned about orderliness or symmetry? To answer yes to any of these questions does not mean that someone has OCD but it should prompt further questions − along similar lines to these but with a range of possible answers to indicate the severity of symptoms.
The most common of these more advanced diagnostic tools is called the Yale-Brown obsessive-compulsive scale – five questions about obsessions and five similar questions about compulsions. Each is answered on a scale of 0 to 4. Question three, for instance, asks how much distress obsessions cause, with 0 = none and 4 = near-constant and disabling. Question six asks how much time each day is spent on compulsions (0 = none, 1 = less than an hour, 2 = one to three hours, 3 = between three and eight hours, 4 = more than eight hours a day).
From a total score of 40, a tally of above 32 is taken to indicate extreme OCD. But at the other end of the scale, it’s possible to score seven and be in the normal range. So, in principle, someone who spends an hour a day thinking obsessive thoughts, and up to three hours a day engaging in compulsive behaviours is considered normal, so long as they are not particularly disturbed by either, and they find they can, more or less, carry on with their lives.
That’s the way that psychiatry works. It’s the way that medics diagnose mental illness. A condition – OCD, depression, bipolar, whatever − is either present or it’s not. Officially, it is no more possible to be a little bit OCD than it is to be a little bit pregnant or a little bit dead. Someone has OCD or they are normal. That distinction is drawn for valid reasons, mainly to monitor disease trends and to decide who is eligible for treatment. But in the real world, it’s not that simple. In fact it’s a lot more complicated. What we can call subclinical OCD is everywhere. The people of Dunedin, for one, are riddled with it.
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Perched on the coast of the South Island of New Zealand, Dunedin was the country’s largest city until 1900, but has done little to trouble the editors of Wikipedia since. Fame briefly visited in the 1980s, when a series of highly rated sixties-influenced guitar bands emerged, and notoriety beckoned when a clumsy marketing slogan to promote a 2008 cricket match, ‘it’s all white here’ – based on the colour of the players’ clothing – went down badly with the visiting team from the West Indies. The local television news handled the row with the sensitivity and nuance of a British tabloid newspaper and illustrated its report with archive footage of the Ku Klux Klan.
Yet the people of Dunedin are special. From the mid-1970s to the present day, the health of more than a thousand Dunediners, all born between 1 April 1972 and 31 March 1973, has been regularly assessed: these people have been tested, prodded, jabbed, measured, checked, questioned and, most important, recorded. The Dunedin generation comprises one of the best so-called cohort studies in the world – long-running surveys of the health of a group of people, how it changes and how it is influenced. Cohort studies are pretty common, but what sets the Dunedin work apart is the effort the study organizers make to keep it going. On assessment day, which comes every few years, they bring participants back to Dunedin from wherever in the world they live. Some 96 per cent of all living participants were included in the round of check-ups when they were aged 32. That’s unprecedented for such a study, which typically sees at least a third of the original subjects drop out by that stage.
The Dunedin data set is valuable to scientists interested in the real-time study of human health and development. Another of its attractions is that it probes the mental as well as physical health of its volunteers, with a psychiatric assessment part of its battery of tests. The Dunedin data set has been used, for example, to assess the role that teenage use of cannabis could have in people who go on to develop psychosis. And it’s been used to probe the levels of OCD in people who, according to the official cut-off line set by psychiatrists, don’t have OCD at all.
When scientists looked at the results for two of these Dunedin assessments – performed when the participants were aged 26 and 32 – they found that up to a quarter of the cohort had reported some form of recurring obsessive thought or compulsive behaviour in the previous twelve months. And when the scientists published these findings in 2009, they raised an argument in the academic community. This wasn’t because of the results, which were in line with those from other studies. A 2010 survey of almost three thousand people across Belgium, France, Italy, the Netherlands, Spain and Germany, for instance, found that 13 per cent of the subjects admitted to a period of two weeks or longer when they experienced unpleasant recurring thoughts or felt compelled to perform repeated actions at some point in their life. And a similar exercise in the United States reported the same year that 28 per cent of Americans had experienced such a two-week spell.
No, the controversy came because the scientists said the results of the Dunedin psychiatric assessments held some important implications for society. In the official write-up of the study’s findings, the researchers suggested that doctors screen the ‘normal’ population to identify – and treat – these subclinical obsessive and compulsive symptoms. This might lower the risk of some people going on to develop ‘full-blown’ OCD, and other mental health problems, they said, which would reduce distress and costs in the long run. They concluded:
Cost-effectiveness analyses will be required to decide whether these cases should be treated, but such calculations should take into account that treatment of mild cases might prevent a substantial proportion of future serious cases.
Not so fast, said Murray Stein, a psychiatrist at the University of California San Diego. In an editorial published in the same issue of the American Journal of Psychiatry as the Dunedin study’s results, Stein cautioned against any assumption that people with symptoms of OCD need help if they have not asked for it. ‘We must consider,’ he said, ‘the very real possibility that the reason so many people with obsessive-compulsive symptoms fail to get treatment is that they manage quite well.’ He continued:
As mental health professionals, we should do everything we can to promote awareness about and accessibility to mental health interventions. As clinicians we have an obligation to help reduce the suffering and improve the functioning of the patients who come to us for help. But, lest we forget, most people with obsessive-compulsive symptoms in the community, whether diagnosable or subthreshold or anywhere in between, are not patients. To suggest that we do more to identify and treat such individuals implies that we know better than they whether and when they need our help.
Who needs help? I did, but I didn’t accept that I did, at least at first. One problem with OCD is that this ‘at first’ stage can last for years. That’s down to a mental paradox. On the one hand, the thoughts and fears of OCD blended so seamlessly with the rest of my cognition, they felt so embedded and so real that it was hard to believe they could be taken away. On the other hand, I knew the thoughts were silly. And just like almost everybody, I had other types of silly thoughts too. I felt the urge to jump from a high place. I had random ideas that I had written the wrong name on a birthday card the moment I sealed it inside the envelope. I checked the back door was locked even though I just turned the key. And these intrusive thoughts went away. They went away by themselves. So I thought my thoughts of HIV would also go away by themselves.
I knew that I couldn’t catch Aids from someone else using my toothbrush, or from dried blood on the ice rink where someone had burst their nose, or from blood that might be contained in water dripping from an upstairs window that landed in my eye when I looked up. I knew that if I had sat on a drug user’s syringe I would have felt it. I knew that my mum’s towels were safe, even though she had to have a blood transfusion one Christmas. And so I thought that one morning, hopefully tomorrow morning, I would wake up and leave behind the silly thoughts that made me worried about all of those things. Unfortunately, that’s not how OCD works. My intrusive thoughts did go away, but there was a catch. One went away just as soon as another came along to take its place.
It was the US psychologist William James in 1892 who first described thoughts as a ‘stream of consciousness’. The term was subsequently popularized by a writing style in which undirected words seem to flow from an author’s head onto the page – Ulysses by James Joyce is perhaps the best-known example. Like all streams, this mental flow is uneven – there are fast and slow sections, eddies and currents, pools and falls. Some thoughts relate to current tasks, or those we have just finished or are about to start. Some are triggered by other thoughts or by actions, or as a clear response to external events. Intrusive and obsessive thoughts are different. They seem to bob up from nowhere.
I was a serial monogamist when it came to OCD. My stream of consciousness had a taut net strung across it, a net just big enough to trap one misshapen irrational thought at a time. The only way to free a trapped thought was for another to knock it out, send it on its way, and for it to settle there instead. Some intrusive thoughts would remain for days or weeks, others would last for just a few minutes. But the net was always full. And the content of the net, the thought that was in residence at the time, was always on my mind.
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Not everybody experiences OCD in the same way. For some people with OCD the mental hijack of their attention is the only apparent symptom of the disorder. They don’t carry out overt compulsions. They don’t feel the need to convert their mental anguish into physical form. They say they suffer from a form of OCD called pure-O.
Most of these people, scientists think, do still carry out compulsions – but they are mental compulsions. They might try to ‘undo’ the impact of an intrusive thought by deliberately thinking of something else to neutralize it. Or they might start to predict the kind of situations that are likely to trigger the unwanted obsessive thoughts, and then seek to avoid them. Both of those mental routines are compulsions. When someone with OCD uses them to suppress or push away the thought, they reinforce it as surely as if they had performed a physical act like touching a wall or checking for blood on a rusty nail. Their response legitimizes the thought and gives it significance.
For most people, the intrusive thoughts are what bother them and the compulsions are a relief, albeit a temporary one. The intrusive thoughts come first. But some people with OCD describe what sounds like a reversed flow of this cause and effect. The behaviour, the compulsion, is more like a tic. It comes first. They can’t explain why they need to tap their hand on their leg a set number of times. They are not doing it as a way to drive something from their mind. They just feel they need to do it, and if they resist the urge to do so then they get anxious.
In these cases the intrusive thoughts follow the resisted compulsion – if these people don’t tap their leg then they worry something awful will happen, perhaps their parents will die in a car accident. That’s a form of OCD known as the just-not-right experience.
It’s pretty difficult to track the true course of events in OCD, the sequence of obsession-compulsion-obsession and where it begins and ends. After all, a circle, even a vicious one, has no beginning or end. But there is evidence that some people with OCD find the unwanted compulsive behaviour distressing, rather than the unwanted obsessive thoughts. Other psychologists have taken this idea further. They have suggested that, even in cases where the compulsions appear to follow intrusive thoughts, it could be the behaviour and not the cognition that triggers the OCD event. The thought appears only as a way to justify the odd behaviour.
The high-place phenomenon – the common urge to jump from a window or bridge – has been explained like this: Say you are standing near the edge of a cliff and enjoying the view. There is no safety barrier and part of your brain, the part that watches for hazards and instinctively avoids them, gets nervous and instructs the legs to take a step back, to minimize the risk. A different part of the brain registers this order to mobilize the legs and seeks to explain it, by comparing the imagined threat to the real threat. Yet there is no immediate threat. You are standing still. So why step back? What’s the problem? The brain – the intrusive thought generator – throws up an (irrational) suggestion: the problem must have been that you wanted to jump.
That all happens in milliseconds, and the strongest signal, the one that breaks through from all of this subconscious activity, is the conclusion that comes as an intrusive thought: I want to jump.
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OCD dissolves perspective. It magnifies small risks, warps probabilities and takes statistical chance as a prediction, not a sign of how unlikely things are. Example – someone once told me that to catch HIV from a kiss was a one in a million chance. But there are seven billion people in the world, right? And if they all kiss someone at some point in their life, then more than 7,000 of them are at risk. If we assume that only about one in 3,500 kissed people have HIV, then that still leaves two people who will catch the virus that way. Why shouldn’t one of them be me?
That’s risk assessment by homeopathy. The hazard is so dilute that it is no longer present. Yet as Jim Carrey’s character in the film Dumb and Dumber replies with excitement when a woman says the odds of her agreeing to join him on a date are one in a million: ‘So, you’re telling me there’s a chance!’ Even when I accepted that it was OCD that made me feel this way, which took a while, there is still the fear of an ironic twist, that someone with an obsessive fear that they will catch HIV in a spectacularly unlikely way could be one of the unfortunate individuals who falls foul of the numbers, and actually does. People have contracted HIV in unusual circumstances – from their dentist, for example.
That helps to explain why people with OCD perform the same checks, again and again. We see the one in a million event and not the nine hundred and ninety-nine thousand nine hundred and ninety-nine non-events that we should do. If I touched a door handle with a scratch or a scab on my finger then my mind instantly told me to check there was no blood there. Many times it told me to check before I touched the handle in the first place. At the time, it makes sense. No blood, no risk. To check, I thought, would make my life easier. Each time, I believed that one more, one last, check would give me the certainty I craved. But one check was never enough. Afterwards, each time, I doubted how thoroughly I had completed the check. So I would do it again.
I once stared for an hour at a photograph of me and some friends in a youth hostel in France to try to convince myself that our toothbrushes were different colours, so I would know no one else would have used mine. You could just make out the toothbrushes held in a cup that the photograph showed on the shelf behind us. Well, you needed a magnifying glass really, so I bought one. Each time I put down the picture, the urge to pick it up and look again returned.
For a while, psychologists thought that the repeated checks of OCD might be down to poor memory, and the prior checks simply not remembered. But if there is a memory deficit, then it’s a very specific one: people with OCD may not be able to remember clearly if they locked the front door, but they can tell you what they had for breakfast before they left the house. The answer seems more subtle. It is not the accuracy of recall that matters in OCD, but a loss of confidence that those memories are true. People who carry out compulsive checks seem to trust their memory less, and the more they check, the more this distrust grows. It is another vicious cycle: memory uncertainty provokes the need to check, and to check increases memory uncertainty.
Here’s an example of that in practice, one that features one of the dullest experiments in the history of science. Psychologists at Concordia University in Montreal asked students to turn on an electric stove, turn it off again, and then check it was off. Others were asked to turn a tap on and off. All were told to repeat their task again and again and again until they had done it nineteen times. Before and after the repetitive tasks, the volunteers (including those allocated to the taps) were each asked to turn off three knobs on the stove – and then to check they were off. Immediately after each test, they were asked to recall which they had turned off.
All of the students could recall the details of the first test. They remembered how they had turned off the stove switches. But, for the second test, the one performed after the repetitive checks, the scientists found some important differences. Those students who had spent all of their time with the stove remembered the second test check differently from the first. They had less confidence that their memory was accurate, and their recall was hazy – not as detailed or vivid. The study showed that repeated checks of the cooker – but not of the taps − introduced doubt in the mind of the checker. Other scientists have repeated the experiment and found the same effect on memory. It can start after just two checks.
The results suggest that the more someone checks that a cooker is off, or that there is no blood on a tissue, then the more that scene becomes familiar. The brain remembers familiar events differently, it tends to focus on meaning rather than colour and shape, which are easier to recall. This makes recall of familiar events less detailed. In OCD this means, the more that we do something, the less sure we can be that we did.
The problem goes deeper. Some people with OCD can stare at a light switch, and still not convince themselves it is off, or look carefully at their scrubbed hands and not believe they are clean. That cannot be down to changes in memory. It is altered perception, and there is some evidence that, just as to check damages confidence in memory, so to stare, even for just a few seconds, reduces confidence in the information collected by the eyes. To reread names, addresses and documents, as people with OCD often must do, could render their meaning less clear − just as to say a word over and over again seems to make it lose its meaning, a well-documented effect known as semantic satiation.
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I knew my OCD was bad when I decided to write a poem about it. I don’t have the poem any more, and I wouldn’t include it if I did. Some things are just too awful to share. The gist of it was that I was a stone and that my friends were fish. They sprouted legs and walked on the land. They grew up. They changed. They evolved. I stayed as a stone. Self-pity is rarely attractive, but even so.