I spoke with journalist and author David Adam over Zoom about the hurdles to OCD treatment, depictions of the disorder in the media, and how people experiencing it can feel less alone. David Adam is an award-winning freelance journalist and author of the best-selling book about OCD, The Man Who Couldn’t Stop.
I’ve had OCD since I was 7 or 8, but I didn’t get diagnosed until I was 29 and haven’t really talked about it openly until this year, at 35. It seems from your book that that’s common—it typically takes about a decade or more for people to get a diagnosis. What do you think are some barriers to seeking and receiving treatment?
I should say first, I think the US is a decade or so ahead of the UK and much of Europe in being transparent about these things. But generally speaking, there are a series of hurdles.
First of all, the person has to recognize what’s going on. It’s natural to not talk about strange, distressing, disturbing thoughts. That’s partly because we think we must be the only person to have ever had these weird thoughts.
So first you have to recognize what’s going on. Then an added complication is that even if you think you might have OCD, the public perception of it is that it’s a relatively harmless behavioral quirk. Every time you see a Hollywood celebrity say, “Oh I’m so OCD because I like to shower,” that makes you think, ‘This is clearly different from that. What have I got?’ When you do decide you have OCD, it takes a certain amount of courage to say these things out loud.
Then in different parts of the world, it’s relatively difficult to actually see that specialist. You have to find the money, or you have to queue like you do here to see somebody at the NHS; that can take months, if not a couple years. And then if you start to get help, the treatment itself is pretty difficult, if you do behavioral exposure stuff.
So all of those are hurdles you have to jump over to get from feeling rubbish to feeling better. At any of those stages, it’s the easier route to stop and just put up with it.
You touched on this, but why you think OCD is depicted as a quirk or joke in pop culture in a way you typically don’t see for things like depression or addiction?
I think it’s partly because much of OCD is private. My OCD was very portable; I could carry it around and there were no physical, obvious signs. But with people who do have physical, obvious signs, those are what people latch onto as OCD because you can’t see inside someone’s head. What you see is them washing their hands or turning the light switch on and off. I think people relate to that because they think, ‘Oh, I have a weird little behavioral quirk too.’
And everybody does, but with OCD, you’re usually doing the behaviors in response to an obsessive thought that is very distressing. It’s the thoughts that really drive the misery of OCD, and then the behaviors are something we try to do to make ourselves feel better.
I think we’re almost at the stage with OCD we were at with Schizophrenia a decade ago. Around that time, there was this campaign to say, ‘You know what? You shouldn’t use Schizophrenia to mean split personality; it’s actually psychosis.’
I think we haven’t quite reached that moment with OCD. People think they know what OCD is; they’re familiar with the term, and the way they use it is simplistic or not quite right. I don’t think there’s any malice in it. I think it just spreads because it’s an easy concept to grasp, partly because many people can identify with the behavioral side of it.
Yeah, and I think you said something like 90% of people have intrusive thoughts, but 2-3% have OCD. I’m sure it’s complex and there’s not just one reason, but why do you think some people’s intrusive thoughts become obsessions and compulsions, while other people’s don’t?
This is the million-dollar question, and it depends who you ask. If you ask a neuroscientist, they’ll say it’s all down to wiring and the brain; if you ask a behavioral psychologist, they’ll say it’s all down to learned behavior; if you ask a cognitive psychologist, they’ll say it’s all down to patterns of behavior or thought. The honest answer is we don’t know.
The way I think of it is that intrusive thoughts are like seeds that scatter across the population, and in some people they take root; what is it that makes some minds more fertile than others? We have some clues. Certain personality types—people with certain patterns of thinking—seem to be more susceptible. One of those is an inflated sense of responsibility, where people think, ‘It’s my job to look after these things’ when it isn’t. Another is what’s called “thought-action fusion,” which is the belief that to think something can almost be equivalent to doing it.
This is very big in religion. In the bible, one of the ten commandments—alongside thou shalt not kill and steal—is you shouldn’t covet your neighbor’s house or wife. Also in the bible, adultery in the mind is as bad as in the flesh. You shouldn’t want something; you shouldn’t be jealous. These are thoughts—there’s no action involved. To think about something is equivalent to doing it.
Those patterns of thinking [inflated responsibility or thought-action fusion] aren’t mental illnesses, they’re just personality types. But those personality types seem to make it more likely that when you have these thoughts—which everyone does—they’re more likely to take route. We honestly don’t know, but that’s the best guess.
Yeah, it’s a lot of responsibility to give yourself, that if I just do this—for me, it’s often that someone won’t die. And then I think for me a lot of it comes down to control. Trying to control my circumstances so I don’t feel fear, but the OCD ends up breeding more fear. Have you seen that in yourself or the people you’ve interviewed? Is it kind of a coping mechanism or a way of self-soothing gone awry?
It’s hard to say, because it shows itself in such different ways. I met someone who had obsessive thoughts that when they closed their eyes, their whole world would change. They’d open their eyes and be in a different place around different people. It’s hard to see how that would be useful, but in other cases things like washing your hands to protect against germs, to a point, does help you. I think the kind of mental surveillance we have is almost instinctive—it’s beyond our cognitive reach—so it clearly did have value evolutionarily.
In your experience and in the research you’ve done, what are some of the effective treatments for OCD?
There isn’t a treatment that fixes everybody, but all the evidence suggests that if you give enough people a combination of relatively high doses of antidepressants and cognitive behavioral therapy targeted towards the obsessions and compulsions*, you’ll get decent results. It doesn’t help everybody, but it helps most people feel a bit better. With some people it does far more than that, and unfortunately in some cases it doesn’t seem to work at all.
Is there anything that gives you hope for people experiencing OCD?
I think it’s a question of access—if we could get more people access to the treatments that work for most people, that would be the best way to lift the burden of OCD. In the UK, it’s very difficult for someone to see a dedicated CBT counselor, because there aren’t many of them and they’re overworked. In some parts of the country or world, there aren’t any at all. It’s kind of the boring answer to most medical issues—that public health measures are the way to do it.
But to give people hope: every time I do an interview or go on the radio, there’s always someone who emails me to say, ‘Oh my god, I’ve never heard anyone talk about this, it described my situation and I feel like I can get help now.’ So just being aware that there will be people out there who are reading this and seeing their own experiences for the first time. And as much as it’s hard to get treatment—if you can get the right one, you can feel better, you really can.
And like you said, talking about it is important because people might think they’re the only one experiencing this and should basically suffer in silence. Or they may not realize they have OCD, which prevents them from even trying to seek help.
Exactly, and you can feel a connection to people again. I think OCD can make you feel like you’re alone and a bit of a freak. You can feel that connection, because there are millions of us who feel the same.
*I also have found some help/relief in mindfulness techniques
