The biggest lie about Obsessive-Compulsive Disorder is that it’s funny, though it is, at times. I laugh when I remember running for the school bus barefoot every morning, brandishing my shoes and socks to flag down the driver, because I had to button and unbutton my uniform so many times — in multiples of four — that I could never quite find the time to clothe my feet.
Still, I never manage to laugh when someone tells me about their alphabetized bookshelf, and how they’re “just so OCD” about those books.
The second biggest lie is that OCD is only about compulsions. Only rituals, continued indefinitely, like washing your hands or flicking a light switch on and off or, indeed, like blinking or buttoning and unbuttoning a shirt. The rituals, people know. The intrusive thoughts that motivate them, they consider less. They can’t conceive of primarily obsessional obsessive-compulsive disorder, where the worries never transmute into a physical compulsion but balloon instead inside the brain. Or of the false memory, the Frankenstein’s monster of an intrusive thought, one ruminated over so long that it solidifies into a grotesque imitation of the truth. Or of trichotillomania, the disorder so often co-morbid with OCD that compels me to pull out my hair.
I’ve written and rewritten my own history of OCD, in notebooks and diaries no one will ever read. Each account I’ve squirreled away, for fear it’s too self-involved or too angry or too melodramatic. I’ve been actively writing it since I was sixteen. It started playing out long before I knew it had a name.
My OCD assumed a recognizable form the first time around. By the time I was fourteen I was touching every item in my bedroom, while repeating a nonsensical phrase before I could go to sleep or leave the house. I ate, showered, and slept according to strict patterns, all governed by the number four. I couldn’t wear new clothes or allow a new item into my bedroom. Instead, I balled them into plastic bags and hid them under my mam’s bed. We screamed at each other every time she found them, because I didn’t know how to explain.
I ate exactly four Cheerios for breakfast. I tucked in every chair at the dining table four, sixteen, thirty-two times. I wore the same too-short school trousers every day, to the endless amusement of two snickering boys on my bus. I repeated every number I ever saw sixteen times. Before long, I could recite by heart the phone number from every real estate agent’s placard in my hometown.
After a brief round of cognitive behavioral therapy, my OCD returned, newly metamorphosed. I became acutely paranoid, compelled to ask every classmate if they were talking about me — which pretty soon they were, because I was demonstrably mental. Two years after I left that school, a boy sent me a mocking Facebook message, telling me he’d heard someone talking about me on the bus. I deleted the message. Then deactivated my account. And then I cried.
The third, and worst, iteration of my illness was primarily obsessional OCD, which bloomed like mold when I was twenty. My anxiety zeroed in on the Internet. I scoured Facebook for entire days, searching for half-remembered status updates that inexplicably made my brain itch. I messaged classmates I barely knew when we took math together, let alone six years later, and begged them to delete photos where I appeared only as a dim shape in the background. I lost friends because I couldn’t explain why I needed an ancient wall post gone — not to them or to myself. I felt as though something else was steering the ship; as though every day I woke up to a mind that was less and less my own.
I feared, too, that I was a bad person, who might have hurt people like childhood bullies had once hurt me. I agonized over things I’d said, and how they could have been interpreted. On the worst days, I tortured myself over things I’d never said at all.
On one metro journey into the center of town, a teenage girl sat down opposite me, and I noticed a small pink pimple bubbling on her right cheek, almost exactly mirroring the one on my left. The train pulled away from the station, but I felt another engine rumble into action. Imagine if you pointed it out, said my brain. Imagine if you laughed at her. Imagine if you called her ugly. Imagine if you stood up, and pointed at her, and called her ugly, and shouted it over and over and over until she cried. The topic exhausted, the train veered onto another track. What if you did call her ugly, and you’ve just forgotten? said my brain, thunderous even as I turned up the volume of my headphones, knowing already that it wouldn’t work. Are you sure you didn’t say anything? She looks sad. Are you sure you didn’t call her ugly? I got off the train three stops early and hyperventilated on the platform, pressing my hands into my temples as if to squeeze out the thoughts.
Obsessive thoughts calcify. Played on repeat, they settle into the crevices of the mind, occupying space reserved for memories. The worst ones become impossible to distinguish from the truth. I truly believed that I’d stood on a train and screamed at a teenage girl with a pimple. I emailed a writer I’d never met, apologizing for something I knew I’d never said. Whenever a celebrity died, I knew that it was the result of something I did or said, and I’d just forgotten how exactly I was involved.
I took a year out of university and spent it imploding. When I returned, I graduated thanks to two factors. The first was a medication and therapy combination that finally, impossibly, seemed to work. The second, the ceaseless tenacity of my mam, who took a four-hour train to Oxford every weekend just to make sure I was eating and leaving my bedroom. Shakily, I stepped onto an upward trajectory, one I still tentatively ascend today.
I can’t hate anyone for making OCD jokes, partly because it’s an unfortunate part of our lexicon — whether I like it or not — and partly because I’d have to hate most of the people I know. And I worry that I’m oversensitive, and that the twist in my gut when I hear a person described as “psycho,” or the erratic city weather as “bipolar,” is just an overreaction. I’m tired of being angry. I’ve been angry for far too long.
But still I wonder, if mental illness wasn’t so widely perceived as a joke, whether I would have taken so long to tell my parents I was faltering. Whether it would have been quite so easy for the kids at school to take the piss out of me. Or whether, after I told a doctor that I couldn’t survive in this mind any longer, he would have sent me away with a generic antidepressant prescription and a flippant comment about how long the waiting lists for therapy were. I saw him again the same week, in the hospital, after swallowing every pill he had prescribed for me.
The paramedics who put me in an ambulance left a plastic thermometer cap in my university bedroom. I kept it there for weeks. Whenever the obsessive thoughts threatened to overwhelm me again, I touched it, and tried to remind myself that this was an illness. That medical professionals had been here, in my room. That the doctors and the medication were the truth, and the clamoring in my head was not. To me, one of the cruelest tricks of mental illness is its ability to convince the sufferer that it isn’t there at all.
More Must-Reads from TIME
- Where Trump 2.0 Will Differ From 1.0
- How Elon Musk Became a Kingmaker
- The Power—And Limits—of Peer Support
- The 100 Must-Read Books of 2024
- Column: If Optimism Feels Ridiculous Now, Try Hope
- The Future of Climate Action Is Trade Policy
- FX’s Say Nothing Is the Must-Watch Political Thriller of 2024
- Merle Bombardieri Is Helping People Make the Baby Decision
Contact us at letters@time.com