Every day, we have between 60,000 and 80,000 thoughts. Most are fleeting and completely harmless. Many are necessary to get a task done, to take care of family or work responsibilities. Some are for dreaming and planning and just pure enjoyment. But for the estimated 2.2 million Americans who suffer from obsessive compulsive disorder (OCD), intrusive thoughts can hugely diminish quality of life and cripple productivity and happiness in those who are affected.
In his new book, The Man Who Couldn’t Stop: OCD and the True Story of a Life Lost in Thought, David Adam, an editor at Nature, delves into the mystery of OCD as well as the lack of information about this complex disorder. Addiction.com’s Suzanne Kane caught up with Adam, who’s based in London, to talk about the book, his own experiences with OCD and what advice he has for those who struggle to overcome intrusive thoughts and patterns of behavior.
Suzanne Kane for Addiction.com: In a few words, how would you describe this book?
David Adam: I think it’s a popular science account of the condition, which is supported by my own story, because I suffer from it.
SK: What was the most difficult part about writing your story?
DA: Telling my parents. When I signed the deal with the publishers I told them, ‘you can’t tell anyone because I need to go and tell my family first that I have OCD.’ With any kind of mental illness — especially one you can hide — there’s this primary anxiety or misery of having these strange thoughts. But then there’s also the secondary factor, because you’re not telling people about it, you’re keeping something from them. You feel like you’re being fraudulent or that you are having this split narrative in your head. You’re always second-guessing every decision you make.
The fact that we’ve never met and I’m telling you things that it took me 20 years to tell my parents, that is cathartic in a way. It doesn’t take away the primary symptoms, because OCD is a medical problem. It’s like someone with cancer — they talk about how they feel, but it doesn’t make the tumor go away, it just lessens some of the knock-on effects.
SK: What childhood experiences, good or bad, stand out for you related to OCD?
DA: I remember as a child counting [on my fingers] whenever people said numbers out loud. I started having to count out numbers on my hands when I was about 6. When someone said the number four, for example, I very quickly, very discreetly, counted 1-2-3-4 on my fingers. I noticed myself doing that over and over. It wasn’t a problem, but clearly, with my experience with OCD, I’ve now been looking backward to try and think of any behaviors as a child that might be relevant.
SK: When did things really start getting bad for you?
DA: It really came on with the fear of HIV, when I was 19 and at university. I grew up in the ‘80s when there was all this fear and panic of the risk of AIDS being HIV because nobody really knew enough about it. It became the big bogeyman, the societal fear. I started to find myself having very irrational, intrusive thoughts about [how] I may have contracted it in all very unlikely scenarios. At the time, I thought that I was very unusual but now I know there were loads of us. That’s one of the interesting things about OCD —what we feel, think or experience as very personal, secretive thoughts and ideas are actually shared by so many people. By 1989, something like a third of OCD patients in the United States had incorporated AIDS and HIV into their obsessions.
On a daily basis, it was hell. I was constantly anxious that I had contracted AIDS … any time I cut myself, I became convinced that someone else could have done the same and left infected blood on the exact same spot. If I picked up a can of Coke and it had a red stain on it, I became convinced it was blood. If I was out in a nightclub and I felt something splash into my eye — beer or a drink — I became convinced that someone had snapped blood at me. All of the time, every day, there was something that triggered this hugely irrational, obsessive fear.
When I felt that fear, it was crippling. It prevented me from enjoying my life. I don’t think it prevented me from doing things; I was still productive, I was at university [and] I was able to pass exams. I had friends. I was able to go out, do things, play football, go to lectures and watch TV – all that sort of stuff. I was just thinking about AIDS all the time, so that made me unhappy. I would try to find reassurance that I wasn’t at risk … I would telephone [an AIDS helpline] and try to get them to reassure me that I couldn’t have caught AIDS in this way. I would donate blood because I knew they would test it. I would do all of these things while trying to live my life. In some cases, OCD can make people housebound; they can’t leave the house. Mine was sort of portable, I took it with me but it meant that I was just always thinking about it.
SK: What happened when you called the AIDS helpline?
DA: Here’s an example I use in the book. I would ring up this helpline and say this is what happened, ‘am I at any risk?’ They’d say, ‘No, there’s nothing to worry about. The risk is very low.’ I’d say, ‘Thanks very much.’ But [then] I’d think, but wait it isn’t zero so… I’d better ring back to make sure. I’d go around in this loop and ring them dozens of times a day and it got to the point where they would recognize my voice and start saying to me, ‘We’ve already told you the answer to this. You need to go away and accept it.’ And I didn’t want that, I wanted them to give me that little flicker of reassurance so I would call them and disguise my voice or put on a different accent just to try and get them to tell me that no, there’s no risk.
SK: When did you accept that these obsessive thoughts were a problem that needed attention?
DA: I went to the doctor and he put me in touch with a psychiatrist and he diagnosed me with OCD. He put me on Prozac and gave me an elastic band to snap against my wrists every time I had one of these thoughts about AIDS and HIV. It didn’t really work. That was in the mid-1990s, 20 years ago. It then took me probably another 15 years to really go and get help and to get properly helped. It was just after my daughter was born, about 2010.
SK: What role did your daughter play in your getting help?
DA: I was playing with her in a playground and noticed she had blood on her leg and it had almost certainly come from a scratch on my own finger. But I started to think that it wasn’t my blood; maybe it was someone else’s blood that had HIV. Maybe she’s rubbed it into her eyes. I found myself putting her in and out of the playground swing, trying to see where she was putting her hands. I must have put her in and out of that swing a dozen times and I thought, What are you doing? I thought, it’s all right to screw up your own life, but you mustn’t do anything that’s going to make her more likely to copy you, or develop this as well, so that was the point where I thought, this just has to stop. I rang the doctors again.
It turns out I lived very close to a specialist treatment service, which meant that I was able to be taken on by them, which was very lucky; it’s one of only a handful in the country. Then I signed up for group cognitive behavioral therapy (CBT). It took a while. They also put me back on high doses of antidepressants again. Not that people with OCD are depressed, but it just seems to work. CBT quite brutal at times, because you’re exposed to what you are most afraid [of] and then prevented from performing the compulsions, which actually help you to feel better, weirdly, in the short term. So, it’s like you get worse before you get better. You have to provoke the anxiety, but the point is that if you don’t do the compulsions, you begin to feel the anxiety go away by itself, with help.
SK: How do you handle an intrusive thought today?
DA: I just try really hard not to react to it. Because you learn that the thoughts are normal and they don’t say anything bad about you. I was constantly asking myself during the very severe times of OCD: Why am I having these thoughts? CBT teaches you that that isn’t the question to ask. They are normal and you can’t stop them. What you have to do is just not attach any significance to them, not interpret them in any way that means you have to change your behavior. I describe it like being a recovering alcoholic. You will always be a recovering alcoholic, you’re always a certain number of days from your most recent drink, and I’m always a certain number of days from my most recent obsessive-compulsive attack. It’s like I’m constantly being offered ‘drinks’ in that I’m always getting these thoughts, and each of these thoughts is not going to get me to perform these behaviors and get back into that cycle.
SK: Has your understanding or appreciation of OCD changed since you wrote The Man Who Couldn’t Stop?
DA: It definitely has. One of the reasons I wrote the book is that after I started to feel a bit better, I started to think about OCD as a journalist rather than as a patient, and I wanted to know more. And there really wasn’t anything that addressed the questions I had. I started doing research about it and it emerged that there was this terrific story here having to be told. The fact that everybody has these thoughts, the fact that OCD is so misunderstood by people, the fact that it’s been around for centuries with people trying to treat it in all sorts of weird and wonderful ways. It’s pretty much been that our understanding of OCD has evolved in a way that can be used to demonstrate our understanding of psychiatry, really. All of the major figures in psychiatry were involved in OCD at one point, including Freud. It really has been a struggle to even try to understand it, never mind treat it.
Too many people use the phrase OCD without really understanding what it means. That can do real damage because OCD is not just about being tidy and liking things clean. It really is about these unsettling, distressing thoughts. The problem is that people with OCD often think, what is wrong with me?
Any time I do an interview or talk to people about this, I get emails from all sorts of people saying, ‘Oh, my goodness, I thought it was just me.’ And they want to know what help is out there, and there is help out there. There are all kinds of organizations [and] charities who, every day, put people in touch with people who can help. It takes an average of about 10 years for people to get help after they’ve been diagnosed. Part of that is because they don’t know [help is] out there. But it is. I recommend that they reach out and get help.