If you have an obsessive but irrational fear, it would probably be pretty difficult for anyone to talk you out of it. Because irrational fears, by definition, aren’t rational, which is one of the reasons having obsessive-compulsive disorder is such a nightmare.
For science reporter David Adam, he’s obsessed with HIV.
“I grew up in the ’80s when there was huge public information about the dangers of HIV,” Adam tells Fresh Air‘s Terry Gross. “And a few years later, when I was at college, I was 18, 19 — I just started to worry obsessively that I was infected. Not that I had done anything particularly that would make me likely to become infected.”
Adam says he knew his thinking was “ridiculous.”
“I am an educated, reasonably scientifically literate person,” he says. “And yet I have this irrational fear, which I recognize as being irrational and being foolish, and I perform compulsive behavior.”
Adam’s new book The Man Who Couldn’t Stop chronicles his experiences and takes a wider look at how medical understanding and treatment of the disorder have changed over the years.
Adam has had OCD for 20 years. His fear that he will catch AIDS — in situations where it would be almost impossible for him to acquire HIV — has been quieted by OCD treatment he’s received, but it hasn’t gone away.
He’s not alone when it comes to this disorder, he says, but that doesn’t help with the agony.
“It’s about the fourth most common mental illness and it affects pretty much everybody — men, women, children, adults, people of all cultures and all creeds and all races,” he says. “And it’s pretty miserable, let me tell you.”
On how Adam’s obsession manifests itself
I scraped my heel down the back of a step in the public swimming baths in Manchester, and I became obsessed that there may have been blood on the step and so I wanted to check that. I then took a paper towel from near the sink and I pressed that to my bleeding ankle. I then became obsessed that there may have been blood on that paper towel, so I had to check on the other paper towels.
And so you get trapped in this loop where you’re desperate for certainty and you can never get it — you’re always checking. For example, I have a small cut on my thumb, right now, today, and I’m very aware of who I shake hands with, if they have a Band-Aid on their finger. I can spot a Band-Aid at 100 yards. I know this is ridiculous and yet a little, little part of me thinks that maybe they’ve got blood coming out of their wound and maybe it could get into my small cut on my thumb.
On how he repeatedly called the AIDS hotline
I hated myself for doing it and many times I would dial the number and then I would hang up before anyone answered. If someone answered, and it was a voice that I recognized, that’s when I started to think, “Well, I better impersonate somebody else.” Because … I know now, that they were getting a lot of calls from people they called “the worried well” at the time. And they would say to people, “You already rung. We can’t give you any more information. You need to accept it.”
But what drives OCD, or at least it did in my case, was this constant need for that reassurance. … It is humiliating, it’s embarrassing, but humiliation and embarrassment were a price worth paying if you get that security, if you get that reassurance, if you get able to put your mind at rest.
On how his obsession with HIV affected (or didn’t affect) his sex life
The only people who I told [about my OCD] were girlfriends … because [sex] was an issue for me. You can have safe sex, but to be honest, [asking about someone’s sexual health] is a rational question, and the OCD mind is not rational.
So I was just as worried about scraping my knee along the surface when I played soccer. I was just as worried about that — and I was still able to play soccer. You just get used to a level of constant anxiety. And the source of the anxiety almost becomes irrelevant.
So I can’t tell you that I was more worried about catching HIV from sex because I was so worried about catching it from everything else that it just blended into the background.
On intrusive thoughts
Intrusive thoughts are everywhere. Everybody, or 95 percent of people, when you ask them, have intrusive thoughts. … A very common one is when you’re waiting for the train … and you hear it start to come, some people get an urge to jump in front of the train. Some people get an urge to jump from a high place, from a bridge or a high window. Some people get an urge just to attack people in the street or when you are in a very quiet place like a church or a library. Some people get a really strange urge to shout out a swear word. Those thoughts are everywhere and in most people they pass, but the reaction to them is usually, “Woah, where did that come from?” In OCD, what happens is that they tend to, for some reason, we treat them more seriously than other people.
So for example, the intrusive thought about stepping in front of a train, someone might have that thought and they’re not suicidal at all and most people would [have the thought and think], “Well, that’s a bit strange. Here’s the train. I’ll get on it and go to work.” Some people, they might think, “Well, maybe I am suicidal, or maybe I do want to jump.” And so what they do is, when the train comes, they just take a step back, they change their behavior because of the thought, and that’s the slippery slope because very soon, rather than take one step back you’ll take two steps back.
On what causes OCD
The honest answer is that we don’t know, but there are some clues. So it seems to run in families, which suggests that there is properly some kind of genetic component, although it has been difficult to pin that down to any particular genes. Certainly there is a clinical, psychological explanation, which is if you have a certain mindset, then you are more likely to misinterpret the kind of thoughts that everybody has.
There is also a sense that there are particular parts of the brain, which can’t be turned off in OCD. There’s a very deep part of the brain called the basal ganglia, which holds patterns for instinctive behaviors — “run away,” or “fight or flight” — and those can be activated and then usually have an alert and then you have the “all clear.”
And it could be that in OCD the message to give the “all clear” doesn’t get through properly and so you are reacting to a stimulus that isn’t there anymore, which would explain the constant need to perform the compulsions.
On whether writing the book helped him
I think it helps … With OCD, or at least my OCD, there are two negative effects. There’s the primary negative effect, which is the anxiety caused by my irrational fear of HIV and that isn’t going to be affected by knowledge. You can’t outthink a thought disorder. Logic is no response to an irrational thought. And so I still get anxious about HIV in loads of different ways that I shouldn’t.
But there’s also a secondary effect of OCD. … Imagine other mental illnesses and some physical illnesses where … you’re so aware that you have this thing, and with OCD you keep it secret, [so] it changes your relationships with people. It makes you think that you’re living a lie, that you’re not being honest with people, that you have this parallel narrative that, “If only I didn’t have OCD, my life would be different and I would be having this very conversation in a different way…” All that kind of stuff.
That side of it has gone now because I’m talking about it; I’m being honest about it. Learning about the science and the history helped connect me to other people.
Copyright 2015 NPR. To see more, visit http://www.npr.org/.
TERRY GROSS, HOST:
This is FRESH AIR. I’m Terry Gross. If you have an obsessive but irrational fear, it would probably be pretty difficult for anyone to talk you out of it because irrational fears, by definition, aren’t rational, which is one of the reasons having obsessive-compulsive disorder is such a nightmare. There are many more reasons, as we’re going to hear.
My guest, David Adam, is a science reporter who has OCD and has written a new book chronicling his experiences and taking a wider look at how medical understanding and treatment of the disorder have changed over the years. The book is called “The Man Who Couldn’t Stop: OCD And The True Story Of A Life Lost In Thought.”
Adam has had OCD for 20 years. It’s been quieted by the OCD treatment he’s received, but it hasn’t gone away. Adam is a writer and editor at the journal Nature and was a special correspondent at The Guardian, writing about science, medicine and the environment. David Adam, welcome to FRESH AIR. Let’s just start with the basics. What is OCD?
DAVID ADAM: Well, it’s a good question ’cause lots of people don’t actually know. It stands for obsessive-compulsive disorder. It is a recognized mental illness in the same way as depression or bipolar disorder. It’s very common. It’s about the fourth most common mental illness, and it affects pretty much everybody – men, women, children, adults, people of all cultures and all creeds and all races. And it’s pretty miserable, let me tell you.
GROSS: OK. Tell us. What is…
GROSS: Describe your main obsession.
ADAM: So I have an obsession with HIV. I grew up in the ’80s when there was huge public information about the dangers of HIV. And a few years later when I was at college – I was 18, 19 – I just started to worry obsessively that I was infected. Not that I done anything particularly that would make me likely to become infected. All of the ways that you are told that you can’t catch it, those are the things that I worry about.
And what makes it an obsession is that I know this is ridiculous. I am an educated, you know, reasonably scientifically literate person, and yet I have this irrational fear which I recognize as being irrational and being foolish. And I perform compulsive behavior – or at least I haven’t done recently – but we can get on to the treatment and that’s part of the treatment. But I perform checks, and I change my behavior to try and make sure that I don’t become infected with HIV. And, even more ridiculously, but even more distressing, is since I became a father, I’m very anxious that I might pass the HIV that I believe I might have onto my children.
GROSS: OK. So let’s just back up a second. Getting HIV is not an irrational fear if you’re engaging in acts in which you may get HIV. That’s why people have protected sex. But you’re worried about getting HIV from doing what?
ADAM: Pretty much everything. So I describe in the book a number of incidents, one of which was I scraped my heel down the back of a step in the public swimming baths in Manchester, and I became obsessed and that there may have been blood on the step, and so I wanted to check that. I then took a paper towel from near the sink, and I pressed that to my bleeding ankle. I then became obsessed there may have been blood on that paper towel, so I had to check all the other paper towels. And as – you sort of – you get trapped in this loop where you’re desperate for certainty, and you can never get it. You’re always checking.
So another example would be – for example, I have a small cut on my thumb right now, today. And I’m very aware of who I shake hands with, if they have a Band-Aid on their finger. I can spot a Band-Aid at a hundred yards. And I know this is ridiculous, and yet a little, little part of me thinks that maybe they’ve got blood coming out of their wound and maybe it could get into my small cut on my thumb.
And so it’s a kind of fear which scientists describe as theoretical. So, in principle, that could happen, but it’s so extremely unlikely that nobody bothers about it. And it’s – I suppose, it’s a bit like walking around being frightened that you might be struck by lightning. That does happen to some people very occasionally, but most of us don’t let it rule our lives.
GROSS: But if there’s going to be 1 in 1 million people to whom this happens, maybe that 1 in 1 million is going to be you.
ADAM: That’s how it feels, yeah – that really does. It’s like, well, why shouldn’t it be me? Someone once told me that to catch HIV from a kiss, for example, was like 1-in-1-million chance. And I did the numbers, you know. I worked out how many people there were in the world and how many people kissed each other, and if we assume that only, you know, 1 in 2,000 have HIV then that means that – I don’t know. I can’t remember what I worked out. But two people a year or something would catch HIV that way. But, of course, that kind of statistic isn’t a prediction. It’s just an indication of how very, very, very unlikely it is.
GROSS: So there was a period when you were calling – I think you’re out of this period, but maybe you’re not – that you were calling the AIDS hotline several times a day, seeking reassurance that the thing you were worried was going to give you AIDS was not going to give you AIDS. And it got so bad that you started to disguise your voice so that they wouldn’t realize that you were this repeat caller. Can you talk a little bit about how embarrassing that must’ve been? Was it embarrassing? Did that not matter because embarrassment is nothing compared to your fear?
ADAM: It was embarrassing, but it was a very impersonal sense of embarrassment because they didn’t know me. They didn’t know who I was. It was all very anonymous. It was just – that was back in the day when phones were still, you know, attached to the wall (laughter). You had to go to a phone box and call them.
So, yeah, I knew it was ridiculous, and I hated myself for doing it. And many times I would dial the number and then I would hang up before anyone answered. And if someone answered and it was a voice that I recognized, that’s when I started to think, well, I’d better impersonate somebody else because what happens is – I know now that they were getting a lot of calls from people they called the worried well at the time. And they would – they would say to people, look, you’ve already rung. We can’t give you any more information. You need to accept it.
But what drives OCD, or at least it did in my case, was just this constant need for that reassurance. You always believe that the next time someone tells me, I will believe it. And so it is – it’s humiliating, and it’s embarrassing. But humiliation and embarrassment were a price worth paying if you get that security, if you get that reassurance, if you get able to put your mind at rest.
GROSS: How long would the reassurance last? Like, say you called the AIDS hotline, and they said, no, really, you couldn’t possibly get AIDS from having touched the towel that you just described. But then you’re going to walk outside and do something else that’s going to scare you, right? So, like, do you have to constantly get new reassurances about new possibilities?
ADAM: Yeah, every time, every time. And even the same possibilities, so…
GROSS: Like, maybe that person was wrong (laughter). Maybe they said I’m not going to get AIDS, but maybe somebody knows more than they do.
ADAM: Absolutely. You know, we’re constantly told to get a second opinion – right? – in medicine.
ADAM: And also there is just this what, in my eye, was a gray area. So I would say to them, for example, I was playing soccer. I scraped my knee along the ground. There may have been blood on the ground. Could blood have got into my – infected blood – could that have got into my wound? And they would say, no, no, no – no need to worry. The risk is very, very low. And I’d say, OK, thanks. And then, just as I put the phone down, I’d think, wait, it’s very, very low. So it’s not zero. So maybe if I’d explained it slightly differently and I got across to them what actually happened, it would have been a risk because no one can ever tell you that there is zero risk of anything.
And so you are absolutely right. You zoom in on the tiny, remote possibility. And then, in seeking that reassurance, because that’s the only weapon you have, is external reassurance, because you’ve told yourself this isn’t a problem and yet – it’s like if someone else tells it to you, you almost get a little kick of reassurance. And that’s – it feels addictive.
GROSS: If you’re hyper-vigilant about an obsessive fear, does it mean you’re not paying adequate attention to other things in your life?
ADAM: Yes, I think it does, yeah. I think, as I said, it made me very selfish. My OCD made me very selfish because I was so concentrated on what I was thinking. I had a sort of a parallel narrative in my head that definitely drains attention from relationships and decisions that you make and – but, also, it takes away – it takes away a lot of the everyday emotion, I suppose, because say if you’re watching a film and you get really lost in it or you’re reading a book and you really want to know how it ends or you really care about the fate of the protagonist or the person in the film, and, you know, you lose yourself. And that’s why we read books and that’s why we watch films, to lose ourselves, whereas I could never do that. You know, I think – I try and remember the movies that I watched at the time, things like “Pulp Fiction” and there was a Dracula – a vampire movie. And, you know, all I was thinking about – I wouldn’t do that because I might get HIV from it, especially because vampire movies became a metaphor for HIV in the ’90s.
GROSS: (Laughter). Yeah.
ADAM: And so it was – yeah, it was just – it’s with you all the time.
GROSS: If you’re just joining us, my guest is David Adam, and he’s the author of the new book “The Man Who Couldn’t Stop: OCD And The True Story Of A Life Lost In Thought.” You know what? Let’s take a short break here, and then we’ll talk some more about OCD and some of the science behind it, what doctors know about it now. And we’ll talk more about your own issues and the kind of therapy that you sought. This is FRESH AIR.
GROSS: This is FRESH AIR, and if you’re just joining us, my guest is David Adam. He’s the author of the new book “The Man Who Couldn’t Stop: OCD And The True Story Of A Life Lost In Thought.” And he has obsessive-compulsive disorder. It’s been treated, so he says he’s a lot better now. But this book is part memoir, and it’s also part kind of, like, science-medical history of our understanding of OCD. And David Adam is a journalist who writes for Nature magazine.
So I need to ask you about sex, (laughter) not in an explicit way, but, like, if you were constantly worried about getting HIV from cutting your knee on the soccer field or scraping your heel in the swimming pool, what kind of sex life could you possibly have had? I have a feeling, honestly – I don’t mean to get too personal, but it’s kind of personal, isn’t it? But I don’t think any safe sex could possibly have been safe enough for you.
ADAM: Yeah, you know, well, I think the sex life that I had probably started later than it would’ve done, and it’s probably been – how should we put this?
GROSS: More circumscribed (laughter).
ADAM: More circumscribed perhaps, yeah. And it’s a question that people ask a lot, you know, when I give talks about this. It’s a question that always comes up.
GROSS: Oh, I don’t feel so bad now. Thank you for saying that.
ADAM: No, no, you shouldn’t. And, yeah, basically the only people I told – I had OCD for – I still technically have it, but, you know, it was really at its peak for 10, 15, 20 years, and the only people who I told were girlfriends because of that reason because it was an issue for me. But there are – you know, you can have safe sex. But to be honest, that’s a rational question, and the OCD mind is not rational.
So I was just as worried about scraping my knee along the surface when I played soccer. I was just as worried about that, and I was still able to play soccer. It’s a bit like – you just get used to a certain level of constant anxiety, and the source of the anxiety almost becomes irrelevant. So I can’t tell you that I was more worried about catching HIV from sex because I was so worried about catching it from everything else that it just blended into the background.
GROSS: And there’s something called intrusive thoughts that you write about, which are – give us a couple of examples of intrusive thoughts, which is another part of obsessive behavior, right?
ADAM: Yeah, so – well, intrusive thoughts are everywhere. Everybody – well, 95 percent of people, when you ask them, have intrusive thoughts. And these are the kind of thoughts that – for example, a very common one is when you’re waiting for the train – the subway or the tube train – and you hear it start to come, some people get a urge to jump in front of the train. Some people get an urge to jump from a high place, from a bridge or from a high window. Some people get an urge just to attack people in the street. Or when you are in a very quiet place, like a church or a library, some people get a very strange urge just to shout out a swear word. And those thoughts are everywhere, and in most people they pass. But the reaction to them is usually whoa, you know, where did that come from?
And in OCD what happens is that they tend to – for some reason we treat them more seriously than other people. So, for example, the intrusive thought about stepping in front of a train, someone might have that thought – and they’re not suicidal at all – and most people would think, well, that’s a bit strange, but, look, here’s the train. I’ll get on it, and I’ll go to work. Some people, they might think, well, maybe I am suicidal, or maybe I do want to jump. And so what they do is, when the train comes, they just take a step back. They change their behavior because of the thought. And that’s the slippery slope because very soon, rather than taking one step back, you’ll take two steps back or – Winston Churchill had this. I don’t think he had OCD, but he had this urge, very strongly, to jump in front of a train. And he said that when the express train passed through the railway station that he waiting at and he wasn’t – the train wasn’t going to stop – he would put a pillar between himself and the edge of the platform just to make sure that he couldn’t jump out in front of it.
And so once you start to treat those strange thoughts seriously, you start to change your behaviors and take a step back. Then, if one step is never enough, two steps are never enough, then it’s not too difficult to imagine people who just think, you know what? I’m just not going to go to the railway station. I’m not going to get a train, just in case. And that has huge implications for people’s lives.
GROSS: Reading your book, I kept thinking what a fine line there is, sometimes, between normal fear and kind of normal obsessions and compulsions and serious OCD or having intrusive thoughts and being, you know, obsessed with intrusive thoughts because, like, don’t we all have some of this to some degree, including obsessions?
ADAM: Yes, I think we do. And I think one of the great myths about mental illness is that there’s a firm line between people who have it and people who don’t. As with most physical illnesses, there is a – there’s a scale, and people are on the scale. They can have it a mildly or severely or even what’s called subclinical. So you can – there is a diagnostic test that you can take to see if you’ve got OCD. It’s called the Yale-Brown diagnostic scale. And it’s perfectly possible to score above zero on that and yet not have OCD. You can be subclinical.
And the way I described it is this – lots of people say, oh, you know, I’m a little bit OCD. Well, you’re probably not. You’re O and C, but you don’t have the D. And the D is where – it stands for disorder, but it could just as equally stand for disruption if it’s starting to really affect your life. So lots of people come up to after me after I give talks and say, oh, you know, I do this thing when I – is that OCD? And I’ll say to them, well, does it affect you? And with one guy who was saying, oh, yeah, I have this thing where I have to check the door is locked. I’m always, you know, rattling the handle to make sure it’s locked. And I said, well, you know, does it affect you? He said, well, yeah, I keep pulling it off. And I said, well, then you probably do have a problem because it’s disrupting your life.
But the kind of obsessive thoughts and compulsive behaviors that people have where, you know – I don’t know – they might need to knock on wood they say something or they have a lucky color or they have a certain mental routine that they go through before they leave the house. If you can leave the house without it causing you particular distress then – I think it’s a medical issue, isn’t it? And people know if they need help or not.
GROSS: What’s one of the latest theories about the cause of obsessive-compulsive disorder? You know, is there a theory that it’s rooted in a certain part of the brain or in, you know, the transmission of signals in the brain? What are scientists saying now?
ADAM: So if you ask neuroscientists, they say it’s all to do with neuroscience. If you ask psychologists, they say it’s all to do with psychology and so on. I mean, the honest answer is that we don’t know, but there are – there are some clues. So it seems to run in families, which suggests that there is probably some kind of genetic components, although it’s been difficult to pin that down to any particular genes. Certainly there is a clinical psychological explanation which is, if you have a certain mindset, then you are more likely to misinterpret the kind of thoughts that everybody has.
And then there is also a sense that there are particular parts of the brain which can’t be turned off in OCD. So there is a very, very deep part of the brain called the basal ganglia which holds patterns for instinctive behavior. So – I don’t know – run away or fight or flight. And those can be activated. And then usually you have an alert and then you have the all clear. And it could be that, in OCD, the message to give the all clear doesn’t get through properly. And so you are reacting to a stimulus that isn’t there anymore, which would explain the constant need to perform the compulsions. And there’s some evidence that if you interfere with those parts of the brain, then maybe you can change the outcome. There are some brain scans which have looked at those parts of the brain and they seem to behave differently in OCD. But all of that research is pretty preliminary, really.
GROSS: David Adam will be back in the second half of the show. His new book is called “The Man Who Couldn’t Stop: OCD And The True Story Of A Life Lost In Thought.” I’m Terry Gross and this is FRESH AIR.
GROSS: This is FRESH AIR. I’m Terry Gross back with David Adam, a science writer who has written a new book about OCD, obsessive-compulsive disorder. The book chronicles his OCD – he has an obsessive fear of contracting HIV – and examines how the medical understanding and treatment of OCD has evolved. Adam is a writer and editor at the journal Nature.
So we were talking earlier about when you were really, really lost in your obsessive fear of getting AIDS in places and from things where there was, like, a one-in-gazillion chance that you could possibly get it. You kept calling the AIDS hotline, and they occasionally would tell you what you really need is psychiatric help. What was your therapy?
ADAM: It was a group therapy. So there was about six or seven of us, and we would meet once a week for three hours. And there was one therapist, and he – so CBT, cognitive behavioral therapy – the cognitive bit was, I suppose, explaining to us that everybody has these really strange thoughts, which is actually something of a revelation because nobody talks about these things. And part of the despair of OCD is that you feel that you’re the only one. And you think there’s something really weird about you because you have these strange thoughts.
In one of the treatment sessions they gave us a handout of a list of really odd thoughts. You know, like, people – I want to have sex with a dog, or I want to hit this person with a bat, or, you know, I feel like I’m going to jump in front of a train, or I feel like I’m going to push somebody else in front of a train, which is exactly the kind of stuff that OCD centers around. But then kind of the punch line was that these were all taken from normal people, none of these people who had OCD.
And that is such a sense of relief because then the problem becomes not, why am I having these thoughts? It becomes how am I dealing with them, and why am I dealing with them in a different way? Because it is impossible to not think about something. You know, if I say to you now, don’t think of an elephant, then of course what do you think of?
ADAM: And so that was the cognitive side of it. It was just about education, I suppose, education just about how the mind works, which actually most people don’t talk about. And then the B in CBT, the behavioral therapy, that’s where it gets a bit tricky because crudely what do is you expose someone to what they are afraid of to provoke the anxiety. And in OCD what usually happens in that situation is you have the obsession, which makes you anxious, and you perform the compulsion, which reduces the anxiety.
So, for example, my obsession would be I may have caught AIDS in this way, and my compulsion would be trying to check that I hadn’t, either by making sure there was no blood around or by calling the National AIDS Helpline or whatever. And although that has a – it reinforces the obsession, the compulsion, actually it does reduce the anxiety in the short term, which is why we do it.
And so what you do is you is – it’s called exposure and response prevention. You expose someone to what makes them anxious, to this source of the obsession, and you stop them performing the compulsive behavior. Now, in the old days, they would actually tie people down so they couldn’t, for example, wash their hands. They don’t do that anymore, but it’s still pretty difficult. I…
GROSS: So how did this work to you? What were you exposed to, and how were you prevented from getting the reassurance that you always seek when you’re worried you were exposed to HIV?
ADAM: So in one of the sessions, I rubbed my eyes. I was tired. And then I thought what if there was blood on my hands? I’m in a hospital. I could have transferred blood from the chair into my eyes. I could have therefore given myself HIV. And what I would do previously would be to look at my hands so that would be the compulsive behavior. I’d see that there was no blood on my hands. I’d check them very carefully. I might even check them again and again and again, but eventually I would move onto something else.
This time, I didn’t. I said – I stood up in the middle of the session. I said, I’m having a thought right now. I’m worried that there’s blood on my hands, and I just wiped my eyes. And the therapist – right, he said look at me, don’t look at your hands. Put your arms out to the side. He said now rub your eyes again. And that was my exposure was that…
GROSS: Well, now, why didn’t you say, I will not? I will not take that risk…
ADAM: I did.
GROSS: …Just because you’re telling me to.
ADAM: I did. I did. I couldn’t do it. And it sounds ludicrous, but I stood there, and I couldn’t do it. It was like my arms were just beyond my control. You know, we talk about thought and mind over matter and – but this was – this was just phenomenal.
And so we reached a compromise. He said, OK, if you’re not going to rub your hands, you can’t look at them ever (laughter) until you feel less anxious, until you feel like you don’t need to look at them. And so I did. It took me about three days, three days during which I was extremely anxious that I had blood on my hands, but I didn’t look at them, not deliberately. And of course in that time I’d wash them, I’d given my daughter a bath, I’d had to shower. And so rationally any blood that would have been there would have been washed away anyway, but still I wanted to check, I wanted to make sure.
And eventually – and this is the theory behind this kind of therapy – that anxiety has to go down because you just cannot keep it at that level indefinitely. And once it goes down by itself without the compulsive behavior, the theory is that then you become confident that that will happen again in the future.
GROSS: OCD is often, like, just very irrational. An example that you give – and I thought this was really interesting – is that somebody who is a compulsive hand washer, and their hands are just, like, never clean enough, that same person can wear the same underwear every day for a week, that the compulsion about clean hands doesn’t necessarily apply to anything else…
GROSS: …In the area of cleanliness.
ADAM: That’s exactly it. And it’s because they’re not really worried about being clean. They’re washing their hands as a compulsive response to an obsessive thought. And sometimes there is no rational link at all between the content of the thought and the behavior. I mean, you see this with other areas of life. For example, women who have been raped – not a very pleasant subject – but we’re very familiar with the idea that they need to have showers, and constant showers, because they want to get themselves clean.
But what you don’t know is that a lot of these women also develop other forms of compulsive behavior, and they would, for example, like to arrange things in the house in a symmetrical fashion. And it’s not about cleaning – in OCD it’s not always about real dirt. It’s about control. It’s about this is what I can do to try and make these thoughts go away. And in some cases, it absolutely is people are worried about germs and contamination. But equally it could be a thought about – we talked about, you know, parents dying in a car crash. Some people would have this thought, and because they can’t make the thought go away by thinking, they’ll develop a tick or a routine. And that can be hand-washing, but it could equally be tapping the wall or saying a magic word to themselves.
GROSS: This is where the compulsion comes in, in obsessive-compulsive disorder. Can you talk a little bit about what you’ve learned about compulsions and how they connect to obsession?
ADAM: Sometimes they do. So, for example, in my case, if I was worried about HIV getting into a wound from a piece of glass, it makes perfect sense for me to look at the glass to see if there’s any blood there. But in other cases, there’s no connection at all.
So, for example, there are people who have a fear of a loved one dying, for example. And they think, that’s a ridiculous fear – well, it’s not ridiculous ’cause we all fear our loved ones dying – but they take it to an extreme where they think that they might be responsible for their death, you know, by – what happens is you can get into a cycle where the compulsion starts to drive the obsession, and then you need to perform the compulsion again.
And so what you can get is – for example, someone who has a fear of a loved one dying, they might just touch something three times for luck. And then they’ll find that that parent or whoever it is doesn’t die, and they think, oh, well, that must’ve been because I did that. And so they invest significance in it. So they think, well, I better do it again just in case. And then the compulsion becomes what they have to do to stop what they fear happening from happening.
And you get this with a lot of OCD that demonstrates itself as – with symmetry and patterns. You know, there is no logical way that you could say, by performing a certain action a certain number of times, it addresses any concern about harming anybody. And yet people do it because they find comfort in it.
So, for example, if you’re waiting for the train, and you get that weird thought about jumping in front of the train, some people might just tap their feet three times as a way to make that thought go away. In no way does tapping your feet stop you jumping. But it addresses the thought, and so that’s why it can become a compulsion because in addressing the thought, it takes away the anxiety. And it doesn’t have to be three times. It could be five times, or it could be that someone scratches their nose, or it could be that they turn around. Any kind of physical – or sometimes mental – compulsion. Sometimes if you get a thought about jumping in front of a train, some people might say a word to themselves, like magic or bananas, and very quickly, because you don’t jump in front of the train, you feel that you want to say that again and again. And then by not saying it, you then become anxious. And so the compulsion feeds the obsession, but in no way is that a rational response to a fear to jump in front of a train. And yet it seems to help.
GROSS: If you’re just joining us, we’re talking about obsessive-compulsive disorder. My guest, David Adam, is a science writer who writes for Nature magazine, and he has OCD that he says is under control now after therapy. He’s the author of a new book called “The Man Who Couldn’t Stop,” which is about his OCD, and it’s a kind of history of our understanding of the disorder. Let’s take a short break, David, and then we’ll talk some more. This is FRESH AIR.
GROSS: This is FRESH AIR, and if you’re just joining us, my guest is David Adam. He’s a science writer, writes for Nature magazine. He also has OCD, obsessive-compulsive disorder. His new book, “The Man Who Couldn’t Stop,” is the story of his own OCD, and it’s the larger story of the medical scientific understanding of obsessive-compulsive disorder.
Children can sometimes be very compulsive about, you know, not stepping on cracks or knocking on the table a certain number of times or only swallowing a certain number of times or – kids have all kinds of things like that. Is that a sign of a compulsive disorder, or are kids just that way?
ADAM: No, it’s not. It’s not. And, you know, any adults also have that. It comes down to ritual. Now, ritual is very important for people, for humans and indeed for some animals. And so in very young children, ritual and patterns and repetition seem to be a source of comfort. So they cannot manage their emotions particularly well. So to get control over something, some control over their environment, they like to, for example, line things up. You know, my little boy does that.
One of the ideas about OCD is that as you get older, the fears change. So when you’re 3, you know, you’re scared of being left alone or not being fed, whereas when you are 5 or 6, you might start to become scared of things like monsters. And the idea is that the fear changes, but the response remains the same.
So social rejection – for example, you know, there are children who feel socially rejected at maybe 6 or 7, and the correct, if you like, response to that would be to talk to their parents about it – whereas some children seem to revert back to their ritual which they found comforting much earlier – is the theory. And so the idea is that ritual, which we know provides some kind of reassurance, then can provide reassurance in situations where it isn’t the best, most optimal response.
So it’s completely natural and completely normal for kids to have rituals and routines. It’s completely natural and normal for some animals to have rituals and routines, and this is why I always stress the D in OCD. Some children do get OCD, and it’s heartbreaking. But of all the ways that we can identify it – and there are many, and none are particularly easy – a child that has rituals or routines is obviously not one of them because that is normal.
GROSS: So when you first were diagnosed with obsessive-compulsive disorder, it was considered an anxiety disorder. But it’s officially no longer considered an anxiety disorder. What’s changed?
ADAM: Yes. I like to tell people that when I started writing the book, I had an anxiety disorder. And when they read it, I don’t, but I still have OCD unfortunately. So this was the U.S. Psychiatric Association, which publishes this every few years – or every 20 years or so, updates this manual of mental disorders which are used to diagnose it. When that latest – it’s called the DSM – came out last year, they decided that OCD would be moved. And it was taken away from the anxiety disorders, as you say, and it was given a new category, given its own category – the obsessive-compulsive and related disorders.
So OCD is now officially linked, if you like, to some other disorders which are characterized by obsessive thoughts or compulsive behaviors, for example, hoarding disorders – this condition where people just fill the house full of stuff and can’t throw it out – things like compulsive skin picking, which is its own disorder as well, and compulsive hair pulling. So it wasn’t a universally accepted change. And in reality, it doesn’t make a lot of difference to those of us who have OCD ’cause it’s all diagnosed and treated it in the same way.
What it does is it starts to build bridges with different disorders based around their symptoms rather than the name of a disorder. So, for example, what they might be able to do now if you’re a scientist is you can take people with OCD and with hoarding disorder and with those compulsive skin-picking disorders, and you can group them together and try and study them together. And you have some scientific justification for doing that.
GROSS: So now that you’ve written a book about obsessive-compulsive disorder, has all the research you’ve done for the book been helpful to you as somebody who actually has OCD? OCD is an irrational disorder. Your fear, when you have OCD, is not based on logic. It’s not based on anything rational. It’s based on something that might have a rational root, but it’s been so wildly exaggerated. So reading all the science, reading all of the history, does that help, or is your fear too irrational for that to penetrate?
ADAM: I think it helps, and people say, you know, did writing the book help? And I would describe it in this way that there are – with OCD – or at least my OCD – there are two negative effects. There’s sort of the primary negative effect, which is the anxiety caused by my irrational fear of HIV. And that isn’t going to be affected by knowledge, you know. As I said, you can’t outthink a thought disorder. You know, logic is no response to an irrational thought. And so I still get anxious about HIV in loads of ways that I shouldn’t.
But there’s also a secondary effect of OCD – and I imagine other mental illnesses and indeed some physical illnesses – where you’re so aware that you have this thing – and in OCD, you keep it secret – that it changes your relationships with people. It makes you think that you’re living a lie, that you’re not being honest with people, that you have this parallel narrative that, if only I didn’t have OCD, my life would be different and I would be having this very conversation in a different way. Oh, you know, if only you knew, all that kind of stuff.
And that side of it has gone now because I’m talking about it, I’m being honest about it and learning about the science and the history helped connect me to the people because there are people, you know, hundreds of years ago who had this experience, and there are people all over the world who have this experience, in many cases, much, much worse than I’ve had it at least in the effect on their life. And…
GROSS: So coming out about it in your book has been helpful and having social interactions ’cause you’re not covering up.
ADAM: Yeah. I just feel like I’m being honest now.
ADAM: My friends joke about it now, which is a good sign ’cause it just means it’s accepted. And yeah, you know, it took me 20 years to tell my parents what I have just told you and the good people of America.
GROSS: And you told them because you had a book contract, and you had to tell them in order to write it. (Laughter).
ADAM: Yeah, exactly. Yeah. When I signed the book contract, I said to the publisher, you can’t tell anyone. I need to tell my family first.
GROSS: Well, I wish we had more time to talk, but we are out of time. Thank you so much for talking with us.
ADAM: Thank you.
GROSS: David Adam is the author of the new book “The Man Who Couldn’t Stop: OCD And The True Story Of A Life Lost In Thought.” You can read an excerpt on our website freshair.npr.org. Coming up, Ken Tucker decides it’s time to review a recording by the prolific Ty Segall. This is FRESH AIR. Transcript provided by NPR, Copyright NPR.