Lily Bailey is a model and author. She also suffers with OCD, to an extent that’s almost crippled her in the past.
She’s published a book, 'Because We Are Bad', which recounts her experience with the illness. In OCD Awareness Week, we spoke to Lily about living with the condition, common misconceptions about keeping your desk tidy and how to cope when you believe you could kill someone with just a thought…
Tell us about your experience with OCD. How did it manifest?
Obviously, there’s the stereotype about keeping all your pencils straight. People often say, “oh, I’m so OCD”, but they don’t necessarily associate it with the fact that, for it to be OCD, it has to be distressing.
One obsession I had as a child was that my sister was going to die in her sleep and that it was going to be completely my fault for not checking on her. It would take me ages to get to sleep, because I’d be constantly crawling upstairs, trying to be really quiet, to check on her breathing and pulse. I was convinced that she would die if I didn’t do that. I did all kinds of things to deal with my obsessions, so I’d always be moving my body in strange ways, I’d be repeating thoughts, praying all the time. As I got older, it developed into writing lists. It would be, “I’m a bad person, and I have to write it down”. I had reams of books, full of these lists.
As I became older, one of the obsessions that popped up for me was that my body really smelled and I that I just couldn’t smell it myself. I’d always be trying to keep my body away from people and going over the thought in my head, “when did I last wash?” and “how close am I getting to people?” You don’t tend to just have one obsession, it’s like the game 'Whac-A-Mole', where one problem pops up, you get rid of it and then another appears.
What defines an obsession and what makes it different from a 'delusion'?
An obsession can be anything. In OCD, a really common thing is 'intrusive thoughts'. Everyone has these. If you say that you don’t, you’re probably lying. An example might be like, when you’re stood on a train platform and you think, “what if I push that person?” For most people, they’ll have that thought, then just move on.
Someone with OCD will have that thought and then think, “that’s terrible. I can’t believe I’ve had that thought. I’m a really bad person.” What develops is a compulsion, so they may have to think “STOP” every time that thought occurs.
I believed I could kill someone by thinking it, or even believed that I have killed someone. There have been cases of people going to doctors and telling them that they’re having terrible thoughts about harming children and that they need to be locked away. Sometimes, doctors don’t know it’s OCD, and think the person in front of them might be dangerous.
This would be extremely distressing for a sufferer and totally the wrong response - the point is, people with OCD become obsessed with these thoughts because they are so unacceptable to them and at odds with their personal values that they simply can’t dismiss them.
Psychiatrists have often described people with OCD as the last people on Earth who would do something bad.
If OCD sufferers tend to be more caring people, can it ever make you a better person in any area?
It’s interesting. If you think about it like a scale of people in your population, at one end you’ve got your psychopaths, who don’t care about anything and, at the other end, you have these people who care too much. Often, these will be the people who suffer with anxiety. Being a caring person can be a good thing, when harnessed.
It is a big mistake, though, to think that OCD can make you better - you know, “it makes you a perfectionist” or “it makes you care”. OCD is never helpful. When you’re going through the throes of it, it’s a nightmare. And when you get better, that innate caring nature doesn’t go away.
You’ve mentioned that people often internalise OCD. What are the signs that others can spot?
Most of the time, the reason it’s so hard to pick up on is that, often, it’s so mental. Even compulsions can be mental. They don’t have to be outward things that people do. Instead of people looking out for signs, I think it’s important that more people know what OCD is, so that sufferers know what’s happening to them. One thing to look out for is that people with OCD will often ask for a lot of reassurance.
How have you learned to deal with OCD?
I had a lot of Cognitive Behavioural Therapy (CBT). That’s the standard recommended therapy for a lot mental health disorders. With OCD, it involves a strict, formulaic model. We do a thing called Exposure and Response Prevention. That involves allowing an obsession to come in and then learning to change the way that you respond to it.
What usually happens for someone with OCD is that an obsession comes in and they will start analysing the obsession, trying to work out how they feel about the obsession… just giving it loads of attention. CBT aims to force you to think about how you feel as soon as the obsession comes in. It’s scary. It’s like jumping off a cliff. You have to take these thoughts that you’re really scared about and stay with them, without engaging. What you learn over time is that it’s the engaging with the thought that makes it so much worse.
If you've been affected by any of the issues raised in this article, these organisations may be able to offer help and support.
Want to know more about how debilitating OCD can be? Read this brilliant BBC iWonder guide.