When I reported to the hospital for my group therapy sessions in the late summer of 2010, if you were to have peered through the window you would not have spotted anything unusual. You would not have seen people wash their hands, or try not to wash their hands. You would have noticed only a group of half a dozen middle-aged people who sat in a circle of chairs and clutched photocopied handouts, while a much younger, much better dressed man with dreadlocks and a ready smile moved between them. We could have been learning to speak Spanish.
My fellow OCD patients signed up for therapy, as I did, in the full and fair expectation that their involvement would remain confidential. So, I’ll be vague. There were two other men and three women. I was the youngest by a good ten years. We were all classed as serious cases (in fact the clinic only treated serious cases). Between us, we ticked most of the big OCD boxes – contamination and checking fears, long-standing symptoms, distress and reduced quality of life. Two of the others had obsessions and compulsions linked to Aids.
We swapped stories and we tried not to swap irrational fears. We agreed to support each other, but, being British, when somebody else told of their darkest moments we mostly shuffled in our seats and looked awkward. And we laughed. We laughed a lot. We laughed at each other and we laughed at ourselves. We had all long passed the time when we feared our OCD, which had announced itself as a mysterious curse on our lives. It was now a hand on our shoulder, a monkey on our back, an irritating shadow. We were fed up with it. We wanted rid of it. But we would probably miss it too. It was simply a part of us.
There was no psychiatrist’s couch and no psychoanalysis. We did not talk about our childhoods. The various causes of our obsessions were irrelevant to the treatment, because they would all anyway have been different. The symptoms were what mattered, and to find a way to reduce them. That was what we had in common.
We saw, through wobbly and badly drawn schematic diagrams, how an OCD mind is thought to work. We learned how the compulsions are a shortcut that helps relieve anxiety, but only for a while. We started to identify dysfunctional beliefs and cognitive errors in ourselves. We started to diagnose them in each other. And we smiled nervously as we did so. This was cognitive behavioural therapy (CBT) but it didn’t feel like the type of treatment we expected. It was mild. We suspected worse was to come. We were right. I was told to smear my daughter in my own blood.
* * *
The psychologist Richard Solomon worked for the US military through the Second World War. Among other things, he used his expertise on perception and hand-eye coordination to improve the defences of the B-29 Superfortress, the aircraft that would go on to drop atomic bombs on the Japanese cities of Hiroshima and Nagasaki. But it was in the early 1950s, with experiments on a pack of mongrel dogs at Harvard University, that Solomon would make his name.
At Harvard, Solomon put individual dogs in a small room he had divided into two with a low hurdle that the dog could easily jump. On each side of the divide, the floor was a metal grid. With the dog on one side, Solomon would flash the lights, and ten seconds later, send an electric current through that side’s grid. Shocked, the dog would leap to the other side. When it settled, Solomon would repeat the pattern of lights and electrocution, hundreds or even thousands of times until the dogs grew conditioned to jump to the other side of the room as soon as the lights flashed.
One day, Solomon increased the height of the hurdle, so the dog in the room could not cross. The lights flashed and the terrified dog, unable to escape what it thought would follow, went berserk. It ran around in circles, jumped at the walls, yelped and emptied its bladder and bowel. But this time Solomon did not turn on the electricity. Gradually, as no shock followed, the dog calmed down. After this version of the test was repeated several times, the dog lost its fear of the lights. Even when the hurdle was lowered again, it would not attempt to jump when they flashed. This reaction is called extinction decay. It’s the basis for a treatment for OCD called exposure and response prevention.
Exposure and response prevention works like this: Get the person anxious by stimulating them with the object of their obsession, but don’t let them take the easy way out – stop the compulsive behaviour. The anxiety has to peak and plateau. In time, it has nowhere to go but down. Once the patient feels their anxiety go away by itself, without the need for compulsions, then, the theory says, like Solomon’s dogs they will lose their fear and start to recover. Early attempts, for example, persuaded people with contamination fears to handle rubbish, but told them they could not wash their hands.
My exposure therapy started by accident. In the fifth session we talked about how almost everybody has intrusive thoughts. We read through the list of normal and abnormal obsessions that Stanley Rachman and Padmal de Silva had compiled back in 1977. It had been a rough night, the baby had not slept well, and as I sat there I yawned and rubbed my eyes. The intrusive thought came as I rested my hands back on my knees. What if there was blood on my fingers? I was in a hospital. I had handled the doors and chairs. Who had sat here before me? What were they in here for? Was it Aids? Had they left traces of blood?
Twenty years before I would have reacted with panic. Now it was a weary sense of resignation. Here we go again. I knew that if I checked my fingers for blood, as I wanted to, the anxiety would fade. I would probably have to check again a few more times, but that would be enough. The thoughts would stay in the room. The thoughts would stay, but I knew the OCD would come with me. I had to resist. This was what I was here for. This was what I would have to do to change. This is what it would take to get better. I sat quietly; I thought and then I spoke to the room.
‘I’m having a thought right now. What should I do? I rubbed my eyes and now I want to check my fingers for blood. I’m in a hospital and there might be blood on the chair.’
‘Stand up,’ the therapist said. ‘Don’t look at your hands.’
I stood.
‘Put your arms out to your sides.’
I did.
‘Now rub your eyes again.’
No way.
People talk about the power of the mind as if it is a force only for good. Mind over matter represents the triumph of will over physical hindrance. Our thoughts are our weapon against the world. Cogito, ergo sum, as the man said. I think, therefore I am. Thought makes us human. Thoughts shape and define us. Our ancestors benefited from thought so much that their enlarged brains had to fold over themselves just to fit inside their skulls. Thought decides our actions and determines our behaviour. We value the thoughtful; who, after all, wants to be thought of as thoughtless?
I was told as a child that I thought too much. But I liked to think. I liked to roll ideas around my head, to test some to destruction and to rehearse my lines. OCD robbed me of that pleasure. My thoughts became the enemy within; a mocking Lord Haw Haw, a poisonous Tokyo Rose. Dubito, ergo cogito, ergo sum, as he said more fully. I doubt, therefore I think; therefore I am. My doubts, my thoughts, now blocked all movement in my hands as I stood with my arms outstretched.
‘Now rub your eyes again.’
‘I can’t. I don’t want to.’
We reached a compromise. I did not have to rub my eyes again, but equally I was not allowed to look at my hands. It took three days for the anxiety to subside. Three days during which I went to work, cooked meals, bathed my baby girl, showered, washed dishes and drove a car. I did it all without a single deliberate glance at my hands. Rationally, I knew that any blood there would anyway be long gone. But I still had the urge to check, to make sure. And as I resisted the urge, the fear and the obsession once again came to dominate my life. The three days felt like three years. Three days is a long time on mental high alert. But three days is pretty quick for an extinction event.
That was progress. And that was when I was sent home to cover my daughter in my own blood. Because I feared, probably more than anything else at this point, to touch her with blood on my hands, I was told that the next time I scratched myself or cut myself shaving or drove a nail through my finger I was to seek her out and daub her face, her head, her exposed arms and legs. The anxiety would peak of course and then, in time, it would come down.
* * *
Because so many of the obsessions in OCD are bizarre, so the exposure therapies used to treat them can appear almost comedic. A 37-year-old engineer whose obsessive disgust at semen allowed him only to have sex in a sterile room he kept for that single purpose was told by his therapists to touch clothes soiled with semen stains and to rub objects with a semen-soaked handkerchief that he was to carry in his pocket. A middle-aged woman with an obsessive fear of animals had to watch as a hamster rummaged through her bedclothes and handbag. We have already met Andy, the betrayed civil servant who was dressed by his therapist from head to toe in brown envelopes.
The exposure, remember, only provokes the anxieties. It is the response prevention that delivers the sting. As the extinction decay kicks in, so someone with OCD – even someone who has had OCD for decades – learns a crucial and life-changing lesson. The events they so fear, the circumstances they spend their lives trying to prevent, do not and will not occur.
Someone with compulsions to tap out numbers or touch blue objects as a way to stop some dreadful thought coming true – that they might hurt their own child, say – find that, if they don’t carry out their ritual, then they don’t hurt their child. Previously when they had not hurt their child – they have never done so and never would – they assumed it was because they had touched and tapped. The ritual blocked the necessary reverse conditioning. They could not learn that their fear was misplaced. With the right conditioning, humans learn quickly. Obsessions that have run wild through a mind for thirty years or more can be tamed by just ten hours of exposure and response prevention therapy.
This form of behavioural therapy has proved so effective that few exposure therapists now feel the need to throw their OCD patients in at the deep end, at least not straight away. More commonly they together draw up a list of feared situations and arrange them in a hierarchy. It’s our own stepped programme. It’s called the subjective units of distress and discomfort scale.
Simon, a 51-year-old middle manager in the US finance industry, received this kind of stepped therapy. Simon was heterosexual and married with two children, but he had intrusive thoughts that he might be gay. Simon did not find himself attracted to men, but he would still keep his distance. If another man walked into his office, Simon would place his hands behind his head, to make sure that he did not touch him. He started to avoid one-on-one meetings with male colleagues and could not bear to watch television programmes or films with masculine characters. He avoided sex with his wife, in case he had thoughts of men.
Simon said his fears were based on what he thought would happen if he was gay: he would have to leave his wife and children and would face hostility from family and friends. Simon had become depressed and started to take SSRI drugs. When they made him less interested in sex (a common side effect) he took that as a further sign that he was gay. By the time Simon was treated at the University of Pennsylvania he was on three separate drugs for obsessions and anxiety, including the antipsychotic risperidone.
The units of distress scale asks patients to rate the difficulty of a particular activity out of 100. Simon’s first exposure was to something he rated as 20: a conversation with another man about gay marriage legislation. As the weeks progressed, Simon would take on tasks that made him feel more and more uncomfortable – sometimes in the formal sessions and sometimes as homework. He would have to strike up conversations with men he met in a sports bar, and then with those men he considered attractive and masculine. He had to stand too close to them. He read gay magazines and then stared at gay pornography. He watched the films Milk and Brokeback Mountain. He had sex with his wife.
By the end of the treatment, Simon went with his therapist to a gay bar – an activity he originally rated with an expected difficulty of 100 out of 100. After twelve weeks, Simon scored just 3 on the Yale-Brown test of OCD severity, down from 24 before he started.
* * *
Unlike the pain and electric shocks of aversion therapy, which we looked at in Chapter Six, the technique of exposure and response prevention harnesses only the patient’s own fears. It does not try to plant new ones. Even so, the deliberate stirring of intense anxiety saw many exposure therapists in the early days sail close to the ethical wind. Like Odysseus as he faced the Sirens, some OCD patients were physically restrained so they could not carry out their compulsions. Some doctors certainly went too far, especially those protected from scrutiny within the walls of state institutions.
Victor Meyer, the London psychologist who developed exposure therapy, saw the trouble coming. In 1971 he wrote that exposure therapy would be stressful for all involved because it needed psychologists and psychiatrists to adopt authoritarian attitudes that were alien to the way they usually treated their patients. He said:
We urge this should only be done where the staff concerned can have the closest supervision and fullest support … The line between firm but sympathetic control and unpleasant and inhumane bullying is a thin one indeed and all too easy to cross when one has devoted a lot of time and energy to a patient who relentlessly and monotonously pursues an unchanging course.
Someone with OCD can be pushed too far. There is no evidence that they have higher rates of suicide, but they do sometimes self-harm. Pain seems to offer these people something, and in 2012 psychologists at Harvard University reported that people with OCD are especially tolerant of it.
The scientists studied the reaction of people with and without OCD to a gentle torture device called a portable pressure algometer. It uses a foot-long hinge and weights to exert constant pressure on the back of the index finger, and feels a bit like a butter knife pressed against the skin. The psychologists asked the two groups to say when the device started to cause them pain, and then when they could bear the pain no longer. The difference between the two signalled their pain tolerance.
The OCD group could bear the pain for an extra 90 seconds. One OCD patient said the pain felt good. Another said he liked it because ‘in all the craziness of my OCD, pain is a constant. It’s the one thing you can count on.’ Just as the Christian flagellant movement of medieval Italy would beat themselves to replace the mental anguish of guilt with physical agony, the Harvard psychologists suggest so people with OCD could use pain to distract themselves from their emotional distress. At the very least, it can make them feel in control of something. It is something they can turn off.
* * *
Exposure and response prevention does not work for everyone. Some patients can’t or won’t try it. Others drop out. And for some obsessions, it’s just not plausible to recreate the experience that triggers the anxiety. Mine is one of those – it’s pretty hard to expose someone to HIV-infected blood under controlled conditions, or indeed to any kind of blood. That’s why I was asked to find and smear my daughter only if and when I cut myself in regular activity such as DIY. Our next example had the same obsessions as me, so let’s call him David.
David was a 45-year-old orthopaedic surgeon who sought help in Chicago for obsessive fear of Aids in the early 1990s. He would keep his theatre colleagues waiting while he washed and rewashed his hands between operations. David’s therapists drew up a list of exposures, but were hindered by strict guidelines from the US Centers for Disease Control and Prevention on steps that health-care workers had to follow to reduce their risks of HIV infection. Specifically, they had to use appropriate barrier precautions to stop their skin and mucous membranes touching blood or bodily fluids, and if some did splash onto their hands, they had to wash immediately and thoroughly.
These rules removed the most powerful weapon available to the therapists: direct exposure to blood and body fluids. Yet David would face this every day in work. This put him in an unusual position. He would confront more intense exposures at work than the therapists could conjure up in the treatment sessions. In work he splashed blood onto his hands. In therapy he had to imagine doing so. The CDC requirement to wash after every minor contact with blood was also the last thing the therapists would have recommended, as it could only fuel his fear. And it was hardly reassuring for David to see the psychologists who treated him check with infectious disease experts about whether this or that exposure scenario they wanted to put him through carried any risk of HIV transmission. David didn’t get better. In the cold language of the clinical case study, his therapists classed him as a treatment failure.
The therapy sessions helped me. They were a crutch to lean on: a little too much of a crutch, as it turned out. One of the ways that people with OCD centred on irrational and unlikely ways to contract diseases carry out their compulsive checks is to seek reassurance. Usually this is the simple ‘can I catch it like this’ question. That was clearly banned by the strictures of exposure and response prevention. But OCD is clever, and mine found a way to break the rules.
Under the guise of chat at the group sessions, I would detail some of the obsessive thoughts that had come into my head during the past few days. I had worried, I would say, about how I picked at a spot on my leg and drew blood. What if I had any contaminated blood on my finger? Superficially, this was a way to air our inner thoughts, to open the windows and blow away the obsessive dust that had accumulated since the last session. But I was acting. When I described the thoughts I watched for a reaction, any reaction, in those who listened. I waited for what poker players call a ‘tell’, for the others to smile with recognition or to laugh and roll their eyes to indicate that, yes, they thought those thoughts were ridiculous. To reassure me that they believed I couldn’t catch HIV that way. That caused as much damage as explicit requests for reassurance. It short-circuited the extinction. I may as well have called the National Aids Helpline and asked them.
* * *
You won’t find this description in the textbooks, but behaviour therapy – the BT of CBT – combines two torture devices dreamed up in popular fiction. Like the Room 101 in George Orwell’s 1984, it puts you face to face with your greatest fear. It traps you next to it until you can feel its warm breath on your face. And then there is the Total Perspective Vortex. The Vortex, according to Douglas Adams’s Hitchhiker’s Guide to the Galaxy series, is a small room that shows the occupant their true place in the great, universal scheme of things. As the celestial sweep of the cosmos unfolds across trillions of light years and through millennia of time, a small dot appears with a sign that reads ‘You are here’.
We saw earlier how much OCD can come down to responsibility. What helped me the most was when somebody else offered to take responsibility for my actions. That’s pretty cowardly and I’m not proud to say that it worked, but it did. ‘I have a good job and I get paid a lot of money,’ the therapist boasted to us one day. ‘If I tell you to do something and something bad happens as a result, then you can blame me. I will get sacked. Do you think I would ask you to do something that will get me sacked?’
If I had blood on my fingers and touched my daughter and gave her Aids then it wasn’t my fault. He told me to do it. If I rubbed my eyes in a restaurant, did not check them for blood and then rubbed my eyes again, as he told me to, it was his responsibility if I caught HIV. The end result would be the same. I would still have the disease. My daughter would still have the virus. But that didn’t seem to matter as much if it was his job to stop it and not mine. It didn’t seem as likely to happen.
* * *
Boom.
* * *
The Total Perspective Vortex fired up. My consciousness soared above my fears, as a camera draws out from a single house on a map to show the street, the town and then the surrounds and countryside. Previously, my OCD interfered with this process. No matter how much I tried to make the camera pan out, the irrational fear stayed in view, like a dirty smudge on the lens. Now the risk of HIV from all those unlikely routes shrank as I rose above to see them in their proper context. Psychologists call this moment of clarity the helicopter view. We see the landscape and all it contains in its proper scale. We regain, in all senses of the word, perspective. From 10,000 feet up, the gap between very low risk and zero risk – so visible and so important to my OCD – is hard to distinguish.
* * *
The six months or so of cognitive behavioural sessions helped everybody in the group. When we met a few months later, the improvement was still there. I haven’t seen the others since, but I hope it still is. Such success is not unusual. The therapy, in the words of those adverts that try to sell isotonic sports drinks or spot cream, is clinically proven. In 2012 scientists in Tennessee and Texas published a comprehensive meta-analysis – the top standard for medical investigations – of cognitive behavioural therapy for OCD. They pooled the results of sixteen randomized controlled trials that featured 756 people and proved that the therapy was more effective than to do nothing. More people improved with the treatment, in other words, than chance alone would predict.
Cognitive behavioural therapy, as the name suggests, is not just about direct challenge to abnormal behaviour. The cognitive bit is important too. As psychological theories of obsessions and compulsions improved, cognitive therapy was added to exposure treatment. It aims to reveal to patients the dysfunctional beliefs they hold – inflated responsibility, for example – and teaches them how to recognize, to challenge and ultimately to restructure these destructive patterns of thought. It stresses how the interpretation and appraisal of thoughts drive OCD, not the intrusive thoughts themselves.
Some OCD patients refuse cognitive behavioural therapy because it sounds too soft. How can talking and thinking, and talking about thinking, dig out deep-rooted obsessions, overgrown with years and sometimes decades of neglect? Others find it too harsh and quit. Some people find a combination of SSRI drugs and CBT helpful; there is some evidence that OCD patients given so-called smart drugs – supposed to give a short-term boost to mental ability, and popular with college students – can improve the outcome of CBT.
It’s common for people who have been through CBT to become evangelists and urge everybody to try it. I’ll say only that scientists know it works. They see how the impact can be dramatic and sudden. What’s more, they know it can alter the structure and function of the brain. Successful therapy shows up on brain scans – which reveal changes in the kind of activities and brain regions we discussed earlier, those that are implicated in the causes and maintenance of OCD. The mind and the brain are not so separate after all. Change the mind and you can change the brain. It worked for me. It can be hard to access good CBT and I will always be profoundly grateful that I did. And no, I never did smear blood onto my daughter.