Alex and I have OCD. We’re both twenty-four; he obsesses over the number three, and I obsess over the number four. His OCD is hand sanitizer, a rollercoaster, and a lifetime of going through the motions. Mine is Facebook and eyelashes and asking questions I’d give anything not to ask.
“It’s something I’ll have to deal with for the rest of my life,” says Alex. I underline this in my notebook.
Alex rode a rollercoaster in the fall — the Cyclone, on Coney Island. Until that day he knew for a fact he was afraid of heights, thanks to a panic attack on a Disney World ride years before. But after he was diagnosed with OCD at sixteen, he began to keep a journal. As he started to recover, he wrote down everything he knew about himself: his favorite season (winter), his favorite color (red), the bands that he liked, his biggest fears. And as his illness receded, he found that the answers changed. His preferred season became spring; his color of choice, yellow. And he realized that he wasn’t afraid of heights. Or of people, or of staying alive after all.
A miserable prologue: That’s how Alex defines every moment before he broke down in his boarding school bedroom, crying and vomiting for two long days until the school doctor asked him the question he didn’t know he’d been waiting to answer: Do you think you might need help? Before his diagnosis, he believed he just wasn’t built to function in society. “It was a relief to know it had a name,” he said. “And that other people had it.”
Alex’s existence was OCD. He divided the world into multiples of three. He touched objects three times, repeated mantras three times, recited lines from books three times. And then he obsessed, calling or texting his father, who is a doctor, several times an hour with fears about his health. There wasn’t space left in his brain for anything else. He didn’t have friendships. He didn’t have hobbies. He went through the motions for show — playing sports, excelling at school. “There was no real person doing those things,” he said. “I learned to act how a normal kid should, but it was all a façade.”
The façade wasn’t entirely effective. Alex’s schoolmates didn’t realize he was ill, but they did realize something was off. “I was bullied for twitching, for being strange, for being a nerd, for being reclusive, for hanging round the teachers,” he said. “I was stuffed in a locker once.”
After touching a door handle or shaking someone’s hand, Alex would hastily sanitize his hands with Purell. “I couldn’t focus until I’d done it,” he said. In the company of others, he’d try to suppress the urge for as long as possible, for fear of the mockery that would follow. “I would hold out as long as I could until my mind exploded.”
He lived numbly. “It was a constant state of a really bad state,” he said. “There’d be objectively good days, where from the outside, you’d think good things were happening, but it wouldn’t even register with me.”
The inevitable end, Alex believed, was suicide. He couldn’t foresee living past sixteen. He imagined his gears wearing out, his engine failing, with no spark of humanity inside to reanimate them. The only reason he didn’t try to kill himself was because he was too busy obsessing, counting over and over to three.
Recovery, through cognitive behavioral therapy and medication, was slow and excruciating. “If I had a million and one worries and could knock it down to a million by the end of the week, that was the biggest achievement in the world,” he said. Even now, at twenty-four, he considers himself years behind his peers in terms of social development. He performs confidence, conceals his conviction that he’ll only wind up rejected, and hopes that one day it will become the default.
His photographic memory pulls him back against his wishes. “At least a few times a day I’m reminded of a visual image and an emotion, and I won’t know why,” he says. He reminds himself that time has passed, that he no longer exists only to obsess. But he never feels the illness is truly behind him. “I can’t forget the past,” he says. “I can’t escape it.”
When I first spoke to Alex, over Facebook, he told me he wouldn’t want himself any other way. Initially, before I spoke to him in person, I struggled not to take this personally, having spent a lifetime praying indiscriminately to please, please, wake up any other way. When we met, I asked him to clarify. “As much as I say I wouldn’t change who I am,” he said, “I would certainly like to change the way I got here. But I’m proud of myself. And I’m thankful.”
Whenever Alex concedes a negative, he sandwiches it within a positive. When I ask if he’s happy now, he says, “I’m a thousand times happier than I was,” before admitting that there’s something ineffable that’s missing, something he understands only by its absence. “But I’m closer than I’ve ever been!”
He sees obsession as a spectrum, one on which he’ll always be “just to the left of normal.” And he pictures happiness, whatever that means, in his future. He imagines he’ll still be anxious when he gets there, but he’ll be a thousand miles away from his boarding school bedroom floor. He’d be grateful to stay exactly as anxious as he is today, in fact, providing his obsessions don’t accelerate again. “That’s the goal!” he says.
Alex is kinder and braver than I am. I find it hard to be grateful for surviving for so long, so many times. Some days I’m so angry I feel it in the speed of my heartbeat: at the kids who bullied me in school, at the interminable waiting lists for therapy, at the friends who didn’t understand or never thought to ask. And at myself, most of all, for putting that look on my parents’ faces, over and over again. Describing that look is hard and hurts too much. It hurts more to imagine how it feels.
The biggest lie about OCD is that it’s funny, though it is, at times. I laughed when Alex explained why his compulsive blinking in multiples of three — sometimes spiraling up to nine, eighteen, twenty seven — stopped him getting anything done: “Because, well, my eyes were closed.” 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 started pulling my eyelashes and eyebrows when I was fourteen. At first I picked the mascara from my lashes, and then I plucked the lashes from the root. Before school, I smeared my mam’s brown eyeliner into the gap in my right eyebrow, though the result was too dark and too warm toned and looked like the handiwork of a child with a crayon. In my final year of university, I squinted into the mirror and extracted my last eyelash with blunt tweezers. For the next four months, I watched my human face return and the pink-eyed rat I’d created fade away.
My friends and family wince when I pull out my lashes, telling me it looks disgusting, or it creeps them out, or my eyes look red and sore. It’s not out of malice — they know I want to stop, and so they try to make me. But deploying shame against obsessive-compulsive disorder is like spraying gasoline to quench a fire. I am ashamed with every eyelash I remove. I’ve been ashamed for longer than my memory can recount. The shame only incites me to hurt myself more.
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.
Alex says there were signs of anxiety when he was an infant. I remember insisting on a particular breakfast cereal when I was six, because I had a math test that day and I was afraid the Cheerios were unlucky.
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. In bed, I lay facing the wall, my legs curled in the fetal position, and was not permitted to roll over or stretch out or release my right arm from under the pillow. When I wrote or typed, each line had to contain an even number of words, and the first and last word of the line had to contain an even number of letters, and the first and last letter had to be an arbitrarily assigned “good” letter, like A or Q or X. 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.
Now, I have mostly good days, with some bad ones peppered in between. At the very least, I can feed myself and leave my house, though my mam’s now an entire ocean away.
Neither Alex or I can declare with any certainty that we’ll ever know a life without OCD. But for now, we are alive. For now, that is enough.
Alex appears relaxed and self-assured, but as he speaks, he picks frantically at his right thumb with his forefinger. I turn to record it in my notebook and notice I am twisting my ribbon bookmark around my own right forefinger, so tightly that my fingertip is milk-white from lack of circulation. We both, it turns out, habitually contort our fingers without realizing. And I can’t sit down to a paper tablecloth or see a paper label on a water bottle without shredding it like a hamster. We’re not on the brink anymore, but neither of us is calm.
I ask Alex the same question several times before I realize I’m prodding for an answer I’m not going to get. I want him to tell me it hurts him, too, to hear people use “OCD” as a stand-in for “meticulous.” He never does. “I know that they don’t mean offense,” he says. “It’s just ignorance.”
Last year I worked in a bookshop, and spent a significant portion of my days shaping and reshaping stacks of new crime paperbacks into fastidiously themed pyramids. It was my job, not a compulsion. If I let the pyramids disintegrate, no one I loved would die. But the jokes came all the same. One customer sidled towards me, in search of the children’s department, as I aligned the books with the edge of the table. “Do you work here?” she opened, grinning. “Or do you just have OCD?”
A careers advisor declared, after I explained why I took a year out of university, that she must have OCD as well, because she worries a lot. A professor told me she was OCD about sentence structure. When I was fifteen and still newly diagnosed, I waited until the classroom was empty and told my favorite teacher why I arranged the same paperback on top of the same planner on top of the same workbook on my desk in every class. In response, he pointed conspiratorially to a neat pile of papers. “See?” he said. “I’m OCD too!”
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 Alex’s school or mine to take the piss out of us. 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.
Before my initial diagnosis, I had carried a wooden coffee stirrer from Starbucks in my coat pocket at all times. I knocked on wood compulsively, afraid that if I didn’t, simple statements of fact — “I have three siblings”; “I have two cats” — would become horribly and immediately untrue. Conversely, I couldn’t walk barefoot on a wooden floor, or touch paper with bare hands. I feared that by touching any derivative wood product, I’d actualize any negative thought that flitted through my mind. When writing in school, I rested my hand on a plastic ruler or the cuff of my sweater to avoid touching the workbook. “It’s because I’m left-handed,” I lied to curious classmates. “My hand will smudge the ink.”
You learn to fight these things. Months after I began therapy, I practiced reciting sentences aloud while sitting on my hands. Exposure therapy, the psychologist explained. “I have a mam and a dad,” I said, resisting the twitch of my fingers towards the wooden window frame. “I have two brothers and a sister.” Next, I took off my socks and stood on the wooden floor. “I failed all my classes,” I said, “and my family are disappointed in me.” Unable to stand still, I paced in tight circles around my bedroom. “My family is dead. My family is dead. My family is dead.”
Other compulsions were easier to rationalize away. Few would argue that any lives depended on my four morning Cheerios. Most would agree that I could roll over in bed without jeopardizing my future. The people around me knock on wood without a thought, barely even realizing that they do it. For them, the compulsion passes within seconds. For me, it grows roots.
In every coffee shop I enter, I look at the stirrers for a second too long. Carrying one would be easier, I think, than rummaging through my makeup bag for an eye pencil, smearing the color on my hands as I touch the sliver of exposed wood at the tip. It would be less conspicuous than lunging toward the first tree I spot on the sidewalk. But it’s important to resist, I remind myself. And I have, so far.
Still, I’m typing this with my forearms primly elevated. My desk is wooden. I can’t let my elbows touch.
This story was originally published at The Big Roundtable.