The Man Who Couldn’t Stop (7 page)

The nurse took away the plastic bag taut with my blood and she gave me a biscuit. I heard the rain outside batter against the windows and I saw the world again as it had been before that first obsessive thought. I saw the opportunities and the hopes, I looked beyond the horizon and I smiled. The relief was so strong. And then, on the way out, I picked up the leaflet. Why did I pick up the leaflet?

The leaflet, one of a number in a plastic rack by the blood centre door, said their tests looked not for HIV, but the antibodies the immune system raised against it. And those antibodies could take three months to show up. Three months in which I could catch Aids and nobody could tell me that I hadn't. As I read the words I loathed them. Whatever anybody said, they could not be sure. The thoughts and the terror and the desolation flooded back across my senses. The dam I had just built to hold them back collapsed. Unwilling to go forwards and unable to go back, I dropped the half-eaten biscuit onto the pavement and watched it swim with the rain.

 

FOUR

An emerging obsession

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.

*   *   *

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.

*   *   *

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.