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OCD sufferer Lena Dunham in Girls

Learning to live with Obsessive Compulsive Disorder

Despite being frequently misunderstood, the true effects of OCD can be crippling. Here, one sufferer shares her reality

This week (May 16-22) is Mental Health Awareness Week, with “relationships” as the theme. We’ll be running features all week about the mental health of those close to you, the mental health of the artists that inspire you and the different ways that communities and individuals deal with the issue. Slowly but surely, progress is being made in the ways in which we discuss a problem that affects each and every one of us.

I have suffered with Obsessive Compulsive Disorder since I was around four years old, and after two decades I am trying to take back the things it took from me.

OCD is a frequently misunderstood anxiety disorder in which the sufferer has intrusive thoughts and images, or obsessions. They then perform compulsions to rid themselves of these obsessions, which can exist separately or in alternate orders. Despite the prevalence of Obsessive Compulsive Disorder (it is estimated that 2.3% of the population suffers from it) less than 10% of sufferers are in treatment, which can be attributed to poor understanding and representation of the disease. 

My disorder developed initially as a way to make sense of and control a world that I did not understand. My home life was rocky and my parents neglectful, so while there were things about my life that I found difficult, I did not have the tools to deal with them or a safe environment to express my fears. I was left to my own devices from a young age, and I developed rituals relating to luck and magical thinking as a way to make everything better.

“If I think of five words that have fifteen letters, my mum won’t shout at me tonight.”

“If I step on any cracks on the way home, my house will set on fire.” 

And so on. 

“I stopped going out in case my house caught fire, stopped swimming in case I caught a disease, stopped eating in case it was poisoned”

These things were easy to do and they consumed so little of my time that I thought there was no harm in doing them. Of course, they built up, and by the time I was 11 I had so many complex rituals that I was late for my first day of secondary school because I was trying to stop people from killing dogs. I had this unbelievable God complex teamed with low self-esteem; I believed that I was worthless but in control of everyone’s fate. My time was worth sacrificing to save the world.

These rituals built so slowly I barely noticed my childhood slipping away. I stopped going out in case my house caught fire, stopped swimming in case I caught a disease, stopped eating in case it was poisoned. My need to count everything became unmanageable. I had frequent trouble with violent images entering my head uninvited, and I didn't feel safe enough to disclose them to anyone in case they thought I was a bad person.

I got together with my first and only real boyfriend aged 14, and we are somehow still together now at 23. My constant need for validation and reassurance was annoying at first, but he didn’t realise the depth of my problems until we moved in together at 19. Then, my obsessive control started to seep into his life.

It isn’t only my intimate relationship that suffered as a result of my OCD. As I got older and made friends who wanted to do things that were outside of my comfort zone, I found myself saying no. I never went on a gap year, I didn’t travel Europe, I have never been to a festival. Even when I was invited, I always found a way to say no. I soon developed an eating disorder due to my addiction to numbers and pervasive self-hatred. I competed with myself for the lowest, cleanest, most perfect food and ran for hours a night.

Things came to a head when I was 17 and on a treadmill with a burgeoning migraine, but I could not let myself stop until I had burned 1500 calories. I was ill, I was dehydrated, but I couldn’t stop. What would happen if I did stop, I thought? The voice in my head gave me an idea: your house will burn down and your dog will die. When I hit 1500 I broke down, and I called the doctor to book an appointment. I made a list of all of the thoughts and rituals I had most days, and there were over 150. The doctor diagnosed me with severe Obsessive Compulsive Disorder immediately.

I started to work on my disorder after it was diagnosed, but it was impossible while I still had to look after my family and had no breathing room in which to recover. After moving in with my boyfriend, though, my recovery made leaps and bounds. I could finally be a teenager, one with no one to worry about but myself.

“It’s been 20 years, but my friends and partner do not love me for my OCD – they love me for the person who is buried beneath it, and it’s my job to separate them”

My relationship is the best thing for my OCD, but OCD is the most damaging thing to my relationship. A certain word or image will send me into a blind obsessive panic, desperately checking and cleaning and performing rituals to placate myself. When my boyfriend tries to help or disrupt my ritual, my negative energy will turn on him and I will fight to be able to continue. However, thanks to his perseverance, my rituals have gotten far less elaborate and time-consuming, and the voice that tells me I Am Good is often louder than the one telling me I’m worthless.

I still keep my house clean to the point of obsession, still feeling that if it isn’t perfect something bad will happen. The deep-seated inadequacy and responsibility still sits in my gut and sets my skin on fire when I am not working constantly, and I get invasive thoughts every day. My behaviours frustrate my partner, but the worst thing is when I transfer my beliefs onto him; when I wonder why he cannot be as clean or as motivated as me. I have to remember that it is because he is not sick.

I allowed my disorder to live so comfortably inside me that I don’t know myself from it. I worry that people love me for the person that OCD has made me, that I would not be intelligent or motivated without it. But, I am learning to prioritise myself and my friendships over the agony that I feel when I cannot count or clean or check or any of the other absurd, unnecessary things I have to do when I have thoughts I don’t like. I grieve for the childhood I lost, and I am rediscovering the things I love. I try to see what will happen when I don’t obey the voice.

It’s been 20 years, but my friends and partner do not love me for my OCD – they love me for the person who is buried beneath it, and it’s my job to separate them.