Four and a half years ago, I was diagnosed with Obsessive Compulsive Disorder. It came as no surprise, I had been living with it since the age of nine. Sitting with a group of friends at a sleepover, my life changed forever. One of the girls noticed that she had cut her arm and it was bleeding. I went to help her clean it, before another one of the girls said, “no, don’t do that, that’s how you catch AIDS!”
I didn’t know much about AIDS but I knew it was a terrible disease and it would kill me if I caught it.
When my parents came to pick me up from my friend’s party, I sat in the back of the car silent, wondering how I was going to tell my parents that there was a chance I had caught AIDS. Guilt like I have never ever known, before or since. How could I tell them? What if they caught it too? I would be responsible for killing my own parents. I sat at the sink that weekend and scrubbed my hands, over and over. But no matter how hard I scrubbed them, they would not get clean, they just never felt clean. AIDS was now a part of my life, not in a real way, but in a way that was entirely in my own mind – I was terrified for my life, for my family’s life. I could not let this terrible disease get my family too. So I kept on scrubbing. In the coming months I would scrub my hands so much that it would hurt to hold a pencil at school, as the skin on my knuckles would crack and bleed. I had the hands of an old lady with a skin condition – at the age of nine. My childhood was gone.
That was twenty one years ago. I am no longer in contact with any of the children at that party, we drifted apart, as most children do. I wonder if the girl who made the comment can even remember that I exist. She probably doesn’t. But the innocently inaccurate and innocuous comment of a child was the trigger to the biggest fight of my life: OCD. Do I blame her? Of course not, she was a child, and she said something that she did not understand. But I cannot help but wonder how different my life would have been if I had not attended that sleepover. Perhaps I would have ended up with OCD anyway, perhaps I would have been an obsessive checker instead of an obsessive cleaner, obsessively checking instead of obsessively scrubbing myself. Really, what’s the difference? It’s no one’s fault.
So, after 17 years I found myself in a doctor’s surgery with my father’s partner. I listened, exhausted, as she explained what I had become: a shadow of myself who spent hours at a time in the bathroom, endless showering, endless hand scrubbing, endless runs of the washing machine, endless washing of clothes, endless list of strange behaviours that only the OCD-er or the people who know them, can recognise or understand. And that was the stuff she knew about. But with OCD, you are an iceberg – only ten per cent is above the surface, the remaining 90% is the terror beneath, the torture chamber of your own mind.
That was four years ago. In those four years I have been on continuous medication for OCD, and for the first three years I was on the maximum dose for the condition. I had twelve sessions of Cognitive Behavioural Therapy (CBT), which helped enormously (when I finally met a therapist who actually knew her stuff about OCD). I was gutted when the sessions came to an end, I was scared about what could happen and if I would go back to that person who thought that putting Dettol on her own skin was a perfectly reasonable thing to do (unsurprisingly, my skin burned as a result). But the therapist’s confidence in my progress meant that I could start to feel some kind of confidence about moving on alone. A year ago I asked my doctor if I could start to reduce the dosage of my OCD meds, which she agreed to do, providing that we would closely monitor my progress. A year later I found myself in the doctor’s surgery again; exhausted, hopeless and utterly depressed. I was permanently on the verge of tears and, once again, I felt like I was trapped in this endless and horrendous cycle of OCD.
I was signed off work and have been off work ever since. Being off work has helped enormously, if just because it has given me a chance to get used to being back on the maximum dose again. It’s given me a chance to sleep. It’s given me a chance to focus on myself and stop lying to myself that everything is ok, when it’s not. It’s given me the opportunity to start putting myself back together. It’s given me time to try and go back to the CBT steps that I learned two years ago and see if I can work out where I am going wrong, what I can do differently. It’s given me time to go back to the book that I believe really saved my life four years ago, Jeffrey Schwartz’s Brain Lock (I would encourage anyone with OCD to read this book). It has given me time. I have felt broken for so long, and it is giving me time to try and fix myself, one tiny step at a time. I am so grateful for this time.
I have a long way to go and I am nowhere near where I would like to be. A friend of mine suggested that I use this time to write. And that’s where this blog comes in. I hope it can shed some light on what it’s like to live with OCD, for myself and for anyone else who happens to read it. If it can help someone who lives with OCD feel a little less alone, then all the better. I have decided to just write, without re-reading and re-writing. So forgive me if the posts read as something disorganised and haphazard, but that’s my brain and that’s OCD. I am just going to write.