First Person

Beyond Straight Lines: My Life and OCD

Audio: Read by the author.

‘I can’t possibly put those shades of beige together, I’m so OCD about it.’

Early Life and Obsessions

I started as an anxious child. Afraid of loud noises following a trauma, I couldn’t go to parties because I had a phobia of balloons, fireworks, rides – the fun things that other children enjoyed. I couldn’t stay away for sleepovers, constantly scared that leaving my parents would mean they would die, or I would. I had to line my teddies up in case I would fall out of bed, I couldn’t sleep if I hadn’t said a torrent of prayers. I was meticulous about routines, thinking if I didn’t salute that magpie or step on that stone I would die.

I went on to be an anxious teen. Without really realising it, I had experienced panic attacks from an incredibly young age. I was afraid to go to parties, afraid of saying the wrong thing, of hurting people, dying, getting buses, moving. I would sweat through my tops in minutes and spend a lot of time at school in lessons under the dryer trying to get the stains out of my armpits. I constantly needed to escape to the loo, scared I’d be sick or wet myself in front of people.

When my parents picked me up from school I would cry and cry, I wanted it to stop. I just wanted to be ‘normal.’ And I never told anyone how I felt. I would hide, for fear of exposure. Scared my problems weren’t real, scared I was making it all up and attention-seeking, scared that I was a liar. The best way I could describe it to myself was that I felt ‘weird.’ When I walked through the playground I felt skinless, naked. I got jarred when I spoke, thinking that I wasn’t making sense. I would stop and forget what I was saying. People thought I was cold, mysterious – but really I was just constantly terrified.

Increasingly, I began to disassociate (not that I knew what this was at the time). The world felt fake. My family looked like imposters, and everything was tinted with a squeaky light. I didn’t know who I was. I didn’t even feel like I could respond to my own name when people called for me. And whilst all of this was happening, I learnt so well how to wear the mask of ‘normality,’ how to smile and say ‘I’m good thanks,’ that it became my face and I didn’t even recognise myself in the mirror. I was hollow with fear.

My First Job and Harm OCD

It wasn’t until I began my first ‘real’ job after uni that I realised I could no longer ignore what was happening to me. The fear of wetting myself, something incredibly embarrassing at work, became so strong I kept spare clothes in my car. I would convince myself I was going to wee in meetings, leading to a compulsive behaviour of continually running to the loo to check I hadn’t.

Then the intrusive thoughts became a fear of harming people. When I drove anywhere in my car, I looped back on myself to check I hadn’t run anyone over. Debilitated each day by increasingly violent thoughts, images, and fear, by the time I moved to London I could barely make it out of my new, shiny flat before my legs went to jelly and I felt like I was going to crumble. I was scared to tell anyone, scared they would be scared of me. Scared they would tell me I’m crazy. I would call my sister to check I hadn’t hurt anyone, check I hadn’t cheated on my partner. Before I slept, I would make my partner hide all the knives in our new flat, I would constantly check if the door was locked. 

I thought I was developing psychosis or that I wasn’t in control of my body. I was convinced I was going to be taken away or sectioned. I would constantly get paranoia that my parents were calling the police on me to take me away in the ‘white vans’ which loomed in my mind like ghostly spectres. Then I started to hear voices in my mind saying horrible things. That was it, I thought, I truly am ‘mad,’ ‘crazy,’ and whatever other malicious, inaccurate description I could throw at myself to try to describe what was going on in my head. If no one else would section me I would have to do it myself right? It was the best thing to do to keep everyone around me safe. I believed that was the end of my life as I knew it. That I would spend the rest of my days in hospital.

As I had so swiftly transitioned into adulthood my mind couldn’t take it. This is something that can frequently happen to people with OCD and anxiety. As soon as life starts to resemble a ‘normal’ routine your brain convinces you there’s something terrible hidden over the horizon. I didn’t give myself time to accommodate. I ignored my body and mind and chose instead to push myself more and more until eventually, I snapped. It was during lockdown that I experienced one of the worst times of my life.

Lockdown and OCD

The University of Cardiff recently conducted a study looking into how lockdown has affected those with OCD. It’s no surprise to discover that in the state of lockdown, it’s been especially hard to treat people with OCD because therapy most commonly involves exposing people to their fears – something which is very difficult when the sufferer is unable to leave their home.

Although lockdown was initially debilitating for me, it also led to a moment when I saw one of the greatest breakthroughs in my condition. Lockdown gave me space to seek help, to work from home without any pressure or fear, to try new medication in a space that was comfortable, and ultimately, I believe it saved me. People say the night is always darkest before dawn, and they’re right. I hit a place so desolate and low that the only way left to go was up.

For people familiar with OCD, this experience is almost definitely recognisable. However, OCD is one of the most commonly misrepresented and misunderstood mental health conditions, and it differs hugely from person to person. I believe that it’s misrepresentation is one of the main reasons that I didn’t believe I had it. Whilst OCD, of course, involved cleaning rituals and compulsions, this is an incredibly slim aspect of it. I thought hearing voices and having thoughts of harming people meant I was experiencing psychosis or developing schizophrenia. I wasn’t sure what I needed to make me better, I didn’t know what was causing me to feel this way and the uncertainty was the OCD. In reality this was all the OCD talking, something I didn’t know could raise its head in these ways. OCD is the ultimate illusionist and it will convince you of whatever you don’t want to believe about yourself, do not believe the OCD.

Diagnosis and Recovery

I would like to say that OCD is not an adjective, it is not ‘liking things tidy,’ or only wanting certain shades of beige in your house. Now I know how much it has made me suffer throughout my life, I cringe at people who misuse it.

Sadly, many people with OCD are much less likely to come forward about their pain because of the fear and shame that often drives their thoughts. OCD is quite common in women postnatally who have fears of harming their baby. These are the sort of thoughts that are so shocking and contrary to the sufferer’s beliefs, they often don’t want to say them aloud.

Like me, many people suffer for years and years before telling a doctor or therapist. It took nearly 4 years to get diagnosed after the first time I saw the doctor – a short time relative to the experience of others. If you’re reading this and think this sounds like you, please go to your doctor or seek help from a medical professional. Trust me when I say you can’t manage this alone, you cannot beat OCD by yourself, you will need help. The hardest part is making the first move, but also trust me when I say, it will get better.

I took a leaf out of Bryony Gordon’s book – she is a mental health advocate, writer and journalist suffering from OCD, and she chose to give hers a comical name. I have chosen Voldemort for mine, or for particularly bad days, the Dark Lord. I’ve found this has made it easier for me, to drive out the thoughts with comedy is one of the best ways to move forward.

My experience is not unique but it made me feel like I was on my own, as so many mental health conditions do. Although you feel alone, please remember there is always someone there to listen. If you need to talk to someone, I would advise going to your GP with your symptoms. Don’t be afraid of medicine. I was and it made my suffering worse. I was afraid it would ‘change my brain,’ but that is what it was there for. It works for some people and for others it doesn’t but don’t be afraid to try it. With a combination of medication and therapy, I have found that my OCD can be managed. But It is important to remember that it will never entirely go away, it is something to learn to live with.

Though it sounds cliche, recovery is not a straight line, some days are good, some are very bad and most are in between. You will get through this.

Here are some accounts I found relief in on instagram:

Alegra Kastens (@obsessivelyeverafter) Therapist, Feminist, Activist, OCD advocate.
OCD Recovery (@ocdrecoveryuk) OCD Expert by experience, Robert Bray.
Made of Millions (@madeofmillions) On a mission to change how the world perceives mental health.
Windsor Flynn (@windsor.flynn) OCD, Motherhood and Whatever.
OCD action (@ocdaction) A national UK charity for anyone affected by OCD.

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About Author

Lili Cooper (she/her) is a writer and poet living in London with OCD. She graduated from a Creative Writing MA from UEA last September and her writing looks at mental health, femininity, and the personal. She is currently working full time and beginning on a new project informed by her experience with mental health.