With my braces and Sun In bleached bangs, I may have looked like every other teenager at my 1980s suburban junior high, but I knew something about me was different. I was thirteen when I first noticed myself acting in ways that resembled obsessive-compulsive disorder (OCD), though I wouldn’t have known to call it that at the time. It was the summer before ninth grade, the era of coming-of-age movies like St. Elmo’s Fire and The Breakfast Club. My girlfriends and I were obsessed with brat pack actors like Emilio Estevez, Judd Nelson, and Rob Lowe. We spent our babysitting money and allowances at the local Red Rooster, buying slushies (half Coke, half cream soda) and magazines. At sleepovers, we pored over Teen Beat and Bop, spending hours discussing what The Outsiders star Matt Dillon was looking for in a girl or deciding which actor’s shirtless centrefold we would hang in our locker once school started.

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We rode our ten-speeds around our suburban Edmonton neighbourhood well past curfew, quizzing one another on the actors’ heights and favourite books. I could never remember my locker combination, but I knew, down to the inch, how tall Rob Lowe was. We took the number 33 bus to and from West Edmonton Mall to see St. Elmo’s Fire so many times we could essentially recite the whole movie. I imagine the bus driver was relieved when Weird Science came out later that summer: it gave us some new material to act out on the ride home.

I wouldn’t say loving John Hughes characters was obsessive behaviour, exactly—or at least no more obsessive than that of any other teen girl I knew. But I would bet a Judd Nelson glossy eight-by-ten that I was the only girl in my friend group who was both confused and troubled by the need to wake up several times a night to check on the pile of Teen Beats on her bedside table. My nighttime ritual consisted of making sure none of the magazines’ pages had accidentally folded over or been damaged during my pre-bedtime reading and stacking. I would lift each magazine up, inspect it to make sure it was in perfect shape, and replace it on the pile—which had to be in a certain corner of my nightstand, right between my Cabbage Patch Kids doll and Dr Pepper Lip Smacker.

Thirty-six years later, my checking behaviour continues—only it’s no longer brat pack centrefolds that consume me. Checking is a common OCD ritual, right up there with counting, tapping, cleaning, and handwashing. It’s also what people often, mistakenly, think all forms of OCD look like. In the US, nearly one in 100 people suffer from OCD, with about half of those cases being severe. In Canada, 1 percent of the population will experience an episode. I am one of these Canadians. I lose hours of every day to various checking rituals—making sure my bathtub tap isn’t dripping, or my hair straightener is off, or my apartment door is locked.

Most people with clinical OCD have both obsessions and compulsions, but the compulsions—the counting, the checking, and so on—are typically the focus when the condition appears in entertainment or popular media. Compulsions on screen are often played for laughs, like Parks and Recreation’s Leslie Knope’s fondness for three-ring binders and colour coding or Bill Murray’s baby step–obsessed character in the 1991 film What About Bob? A friend recently sent me a list of celebrities who have OCD, or what journalists think OCD looks like—it included the fact that Cameron Diaz opens doors with her elbows. The Wall Street Journal recently used the headline “We All Need OCD Now” for an article on COVID-19 and the importance of frequent handwashing. Finally, my debilitating mental illness has a timely hook!

The obsessions—the unbidden thoughts driving the compulsions—are comparatively less discussed. When I try to explain my OCD to people, they don’t understand the fears and anxieties that drive these compulsions or what the repeated actions are meant to accomplish. I don’t check taps because I am really into ornate faucet design. I do it because it is the only way to quiet my brain.

I once heard OCD described, very accurately, as a record skipping in your head. The checking routine I have before I leave my apartment can take anywhere from thirty minutes, on a very good day, to two hours, on a very bad one. There is a voice in my head that won’t go away, repeating: “You must check the fridge door to make sure it is closed, or the fridge will defrost. All your food will go bad and your kitchen will flood. It will destroy your apartment and the one below it.” I pray that my foot won’t hit the overflowing recycling bag in my kitchen that sits directly across from the fridge. If my foot hits it, it disrupts my very specific, everything-in-its-place checking routine, and I have to start all over again. Repeatedly checking the door helps to calm all the fears I have about what disasters could happen if the door were left open. These fears may seem irrational, even ridiculous, to others, but they are very real to me.

My OCD makes me feel like a bad friend, a bad coworker, and a bad daughter. I can’t show up places on time and I feel like I am always apologizing for being late. I can’t travel easily and I avoid doing so whenever I can. If I do have to travel, I start dreading it months in advance. My pre-leaving-my-apartment routine is nothing compared to my routine for leaving my apartment for a vacation. I often cancel plans so I can avoid having to leave my house at all—the thought of going through my checking is too exhausting to contemplate.

As a result, I isolate myself. I live in fear of people laughing at me, which they have done. I avoid relationships because I can’t imagine someone staying at my house for a night. “Just go to bed. I’ll be there in a couple of hours, after I check the windows repeatedly to make sure they are closed because I am worried that, if they aren’t, someone will somehow scale the side of my building, climb three floors, cut the window screen, and enter the bedroom to kill us.”

Who’s in the mood for romance now?

Media and pop culture portrayals of OCD don’t help with the misconceptions about it. People with OCD are typically portrayed as Type A clean freaks, Sheldon Cooper–like nerds, productivity machines, or eccentric weirdos. In case you’re wondering: no, I don’t wear tissue boxes on my feet like Howard Hughes. No, I don’t have an elaborate floor-cleaning process like Faye Dunaway in Mommie Dearest. No, I don’t spend all day avoiding cracks in the sidewalk like Jack Nicholson in As Good as It Gets.

Stereotypical portrayals too often focus on the rituals and portray none of the nuanced, often agonized thinking behind them. Consequently, it’s become common—and even acceptable—for anyone who likes things in order or who keeps a clean house to use the OCD label to describe themselves.

“I’m so OCD” has become a joke, a shorthand for being clean or organized. The first time I noticed this, I was sitting in a work meeting watching the woman across from me remove pencils from a case and arrange them neatly in a row in front of her. “I’m so OCD,” she joked when she caught me watching her. No one else seemed to notice what she was doing. I asked her if she had OCD; she confessed she didn’t. She told me she just liked her pencils in colour-coded order. I blame shows like Friends for making her think it’s okay to treat OCD like a quirk—like being Monica Geller–level organized is the same as having a debilitating illness.

The actual suffering of those with OCD has been replaced by puns and punchlines. There are “Obsessive Crossfit Disorder” shirts—if only my suffering was healthy and came with increased stamina. Retail giant Target even had an “Obsessive Christmas Disorder” sweater, for which it was later criticized. (If Christmas isn’t your thing, I also recently discovered “Obsessive Cookie Disorder” versions.) There is also something called “Obsessive Castle Disorder,” which is used to describe fans of the Nathan Fillion crime drama Castle and, sadly, not people who enjoy actual castles.

It seems like marketing departments can’t get enough of my mental illness. My inbox often fills with listicles and quizzes like “33 Meticulous Cleaning Tricks for the OCD Person Inside You” and “5 Types of OCD Friends You Know and Love.” I have had people joke that I should bring my OCD over to their place so I can clean their home, as if my mental illness were a bottle of Javex. On the television drama Monk, detective Adrian Monk uses his OCD to help solve crimes, and Khloé Kardashian recently talked about how her OCD, which she’s never confirmed a diagnosis of, helps her to create perfectly stacked rows of Oreos and closets with clothing organized according to colour and type. She refers to it as her “KHLO-C-D” and has turned it into a money-making venture, with sponsored posts on her Instagram feed that show her surrounded by bedazzled bottles of Febreze. She would be the perfect contestant on Obsessive Compulsive Cleaners, a UK reality show that has shown people diagnosed with OCD team up to clean dirty homes. Pop culture portrayals like this make OCD look like a blessing, not a curse.

I have many criticisms of the HBO show Girls, from its lack of diversity to pretty much the entire character of Marnie, but Hannah Horvath’s OCD in season two was the closest thing I’ve seen to a realistic onscreen depiction. Show creator Lena Dunham has talked openly about her own OCD and anxiety, on which Hannah’s experiences are based, and her desire to end the stigma around it. Mercifully, Dunham didn’t make OCD Hannah’s defining personality trait—a relief for people like me who are sick of portrayals that do just that. (As we all know, it’s being a total narcissist, not having OCD, that is Hannah’s defining trait.)

In the show’s second season, we see Hannah take eight potato chips out of a bag and line them up neatly in a row on her kitchen table. She scoops them up and shoves them in her mouth, chewing them eight times before swallowing. More things are done in eights: she blinks eight times and opens and closes her front door eight times before entering her apartment. She repeats “You are fine and good” eight times to herself in front of the hotel mirror. When the counting takes over, she is unable to do much else apart from giving herself a bad haircut and eating a tub of Cool Whip. The stress of a looming deadline and a recent breakup only makes it worse.

Hannah eventually visits a therapist and describes the exhausting nature of her rituals: how they keep her up until the wee hours and how they make her feel like a zombie in the morning. When I first saw this episode, I felt like she was describing my situation. I was so relieved to finally recognize myself in an OCD portrayal that I burst into tears and sat on my couch sobbing until well after the episode had ended. I had a similar reaction to HBO’s Euphoria, which also offers an accurate and honest portrait of living with OCD.

It isn’t just the lack of positive pop culture portrayals of OCD that makes me feel bad. I recently watched an old episode of Sex and the City where Carrie Bradshaw is getting ready to leave on a trip. She finishes her cigarette, gently stubs it out in an ashtray, grabs her luggage, and leaves her apartment. I don’t know what happened next because I was unable to focus on the rest of the episode. I kept thinking: “Is that cigarette properly out? There is no way that gentle stub could have extinguished it. She didn’t even really check it. What if her apartment burns down?” I wondered if she would worry about it later. Would she be unable to properly focus on her conversation with Samantha about big dick energy—this was pre–Pete Davidson—or Post-it Note breakups?

If that had been me, I would have had to flush the cigarette butt, rinse the ashtray numerous times, and leave it filled with water in the sink. After those steps, I would have taken numerous pictures of the ashtray with my cellphone in case I was worried later about whether my cigarette was, in fact, out. My OCD was ruining Sex and the City for me—something I thought only the Aidan storyline was capable of.

I recently realized that I went three months without using my stove, reasoning that, if I never turned it on, then I didn’t have to worry about checking it. If food needed to be heated, I microwaved it or used boiling water from a kettle, or else I didn’t eat it at all. That lasted until I began to think about checking the microwave and kettle, at which point I switched to sandwiches and cereal. My OCD has cost me so many moments and opportunities.

I dread my morning checking routine so much that I stay in bed well past my alarm, thinking of all the rituals that must be done. I lie in bed for as long as I can, staring at my bedroom ceiling, listening to my upstairs neighbour race around in the morning. I live in an old building, where every floorboard creaks and every footstep echoes. I can tell my neighbour’s morning routine takes her under an hour, and I envy her for it. But I’m also resentful, and not just because she appears to love wearing clogs. I so badly want to be someone who can run out the door in the morning, someone who grabs their keys and just goes.

Before the pandemic, when I still worked in an office, I avoided early morning work meetings because I couldn’t even imagine what time I would have to wake up to make it somewhere for 9 a.m. Instead, I’d have a list of excuses ready, from the specific “dentist” to the vague “prior meeting,” but rarely were any of them true. I am very blessed to have incredibly understanding coworkers and a job, as the publisher of a small progressive magazine, that did not require me to be at my desk from nine to five.

But, as blessed as I am, I still wanted to make morning meetings, and I constantly felt like a failure when I couldn’t. I wanted to be one of those people who stops at the café by their office every morning to have granola and fruit and to read the paper before their workday begins. I long to be one of those writers who works for two hours in the morning before stepping foot in the shower. But I cannot. For starters, I would have to turn on my laptop—and that would require adding its status to the already too long list of things I have to check.

By the time I’d get on the subway for my commute to work, I would already be exhausted. I’d wait in my apartment, sweating in my coat as I looked out my peephole and listened until I heard my neighbours exit the hall. I didn’t want anyone to see me standing in front of my apartment door, checking and rechecking the lock, pushing on the door, putting my purse and tote bag down on the floor so I can push with both hands. I dreaded someone seeing me get halfway down the hallway only to turn around to check it all over again.

When my OCD is at its worst, I think of all the things I do in a day as just noise and static sandwiched between checks—no matter how important or fulfilling they might be at other times. Back in the office, which had a whole different checklist than my apartment, I’d often work late, well past the hour when I should have stopped, just to avoid starting the routine at the end of the day.

When the voice in my head is not telling me that I must check the stove repeatedly to make sure it’s shut off or my apartment will catch fire, the voice tells me I am imperfect—I am a failure because I cannot silence it. So I push myself to work harder, to do better, and to achieve more. I am so disappointed in myself that I channel that frustration into a near impossible level of perfectionism. Stress only makes it worse. When there are things I can’t control, I focus on my compulsions—which sometimes feel like the one thing I can control.

One thing I know I can’t control are the long, daunting wait lists to get mental health treatment. I have been on many lists for more years than Khloé Kardashian has been arranging Oreos. Once a person does access help and support, it can be prohibitively expensive to maintain it. I did save a lot of money eating sandwiches and cereal for months, but even that wasn’t enough to afford help. A typical therapy session in Toronto, where I live, can cost up to $175 an hour. Online resources can help only so much. And it can be difficult to navigate and maintain a potential support network of friends and family. While I try to be open about my OCD, I have shared in the past only to be told that I should “get over it” or “just stop,” as if it were that easy. I also had a friend who used to regularly give me CDs by artists with OCD, like Fiona Apple and Joey Ramone. I assume this was meant to be a form of help, but I had no idea what I was supposed to do with these. A musical interlude?

Long wait lists for help need to end, but so do unrealistic pop culture portrayals. Accurate representations—ones that include both the obsessions and the compulsions—increase our understanding of the condition and, in turn, make people like me feel more comfortable talking about it without worrying about being mocked or reduced to a stereotype.

Lisa Whittington-Hill on Email
Lisa Whittington-Hill
Lisa Whittington-Hill is a writer based in Toronto. Her work has appeared in Longreads, The Walrus, Hazlitt, Catapult, and more. She is also the publisher of This Magazine and teaches in the publishing program at Centennial College.