OCD (obsessive compulsive disorder) can be extremely disruptive and distressing for those that struggle with the disorder. Today on the blog, a member of the Mind team talks about their experience with OCD and how they have found ways to manage it.
If another person was doing this, you might call it abuse or bullying. Someone who says, over and over: "No. That's not good enough. Do it again." Who torments you and won't let you go to sleep. You might even call it torture.
Except it's happening inside my own head, so I can't get away from it. That's what obsessive compulsive disorder (OCD) feels like: it's a bully I can't escape from.
Some people think OCD is a joke, or it's just being really neat or tidy. That's not what it's like.
In fact, the World Health Organisation views it as one of the top ten most disabling health conditions there are.
It has even made me feel like I want to burn my house down.
My OCD makes cleaning and tidying difficult. I’ll set aside time to sort out a particular room, then just do one thing over and over. It’s hard to let anyone else help me, because I feel anxious if someone else touches my belongings. So it can take me months to tidy one room.
I wanted to tidy my spare room. The first thing I did was fold up a duvet. My OCD told me I had to fold that duvet again and again and again. Each time, it wasn't good enough. It kept telling me I had to try again. Just once more. Nope, still not good enough.
After three hours, I phoned the Samaritans and told them I felt like setting my house on fire because my OCD wouldn't let me put anything right.
I realised I had OCD in 2013, while watching the BBC documentary Don't Call Me Crazy. It featured someone with OCD who said: "I was up until 2am straightening some CDs." I'd never heard someone else say something like this before. Suddenly lots of things made sense.
I'm not sure when it started, but I think I was about 11 or 12. My childhood was quite chaotic. I experienced a lot of trauma and one of my parents attempted suicide. I became obsessed with doing things over and over again, like listing certain words in my head or playing a line of music over and over.
If I did them right, nothing bad would happen. But I never did them right. My OCD wouldn't ever let me think I had. I don't know if that's why it started, though. I don't think I'll ever know that.
Like many teenagers, I collected pictures of bands I liked. I kept having to count them all in order. I used to have lots of piercings but I took them all out because I kept having to count and check them over and over.
I went to school at a time when coursework had to be handwritten. I'd still be there at 1 or 2am, repeatedly throwing away pieces of paper and starting again because they weren't right.
When I realised I had OCD, I was already seeing a therapist. I'd had to go private even though I could hardly afford it - I'd tried asking my GP for counselling to help with trauma, anxiety and depression but he told me I didn't fit the criteria.
My therapist approached it very carefully. He felt my OCD had been a coping mechanism and a way of expressing very difficult feelings. I'd had it for about 20 years by this point. The thought of being without it was actually quite frightening. I wasn't sure I even knew what was OCD and what was me.
That has been the first step towards something that feels like recovery to me: identifying which thoughts and urges come from my OCD and starting to think of them as not-me. Then I notice whether I listen to them or not.
I'm not ready to try a treatment like exposure and response prevention, which helps you resist doing compulsions. It's a terrifying prospect and I'm not sure I'll ever feel ready. But at least now I know when my OCD is lying to me.
It still disrupts my life. I've come to view it as being a bit like a nuisance caller making false 999 calls. It raises the alarm over things that aren't emergencies.
One time, someone put their drinks can on my desk at work. I felt anxious and panicked because my OCD insisted it was contaminated. I can go through a whole pile of post-its trying to write myself just one note. To me, ignoring these things feels a bit like ignoring a rotten corpse with flies buzzing around it. Or at least that's what my OCD tries to tell me.
Talking about it can be really hard because it sounds so ridiculous, like phoning the Samaritans because I couldn't fold a duvet. It might sound absurd, but I felt like I was losing my mind.
I started working for Mind in 2016 and eventually plucked up the courage to start telling people I had OCD. It shouldn't be the case that I'm lucky to work with people who understand, but sadly I know that it’s true.
It helped me to realise that, no matter how many times I do something, I’ll never feel like it’s done and finished. My brain just won’t let me. So when my OCD says: “Just fold that duvet one more time,” I try to remember that I’ll still feel the same whether I do it or not.
Self-care has been really important, too. My OCD wants me to believe I’m a terrible person who can’t do anything right. That makes it hard to do nice things for myself. But something simple, like cuddling my cat or listening to music, can make me feel calmer. It has also helped to learn breathing exercises for when I’m really anxious.
Having OCD can feel really isolating. It can really help to talk to other people with similar experiences, or just to read their stories. It's important to remember that you are not alone, and that things can get better.
If you would like to learn more about OCD we have lots of useful information and self-care advice.
The writer of this blog wishes to remain anonymous.