One of my earliest memories is of my mother massaging moisturizer into the raw skin of my red and bleeding hands, her palms dwarfing mine as she coated them in Lubriderm. She had just pulled me away from yet another hand-washing marathon.
These were the early days of my obsessive-compulsive disorder (OCD), when an intense fear of germs compelled me to scrub my hands until they were the texture of steel wool. I remember trying to squirm out of my mother's grip — the lotion she used burned where it seeped into the cracks in my skin. I was diagnosed when I was 4.
That fear of contamination is a hallmark of OCD — the Wikipedia page for the disorder features an image of a man washing his hands — but intense germophobia represents only one form OCD can take. The only constants of this mental disorder are excessive and unreasonable thoughts that typically compel people with OCD to do the same thing over and over. I'm in the 1.2% of the adult population in this country that suffers from OCD, and over my long psychiatric history, I've experienced just about every type of symptom, from needing to perform certain physical activities (as a child, I had to bang my chair against the floor exactly eight times before sitting at my desk) to overchecking.
I had to bang my chair against the floor eight times before sitting at my desk.
These obsessions and compulsions don't all bounce around in my mind at once, but there's always at least a small battery of them ring away in my brain. Before I leave the house for work, I check that I've packed everything I need in my bag, that I've turned off all the lights, that I've taken my medication. Okay, sure, everyone has experienced that feeling of dread that comes with not being able to remember whether he or she locked the door. But the difference between me and the average person is that I'm not satisfied until I've examined the deadbolt 12 times and made myself late for work.
This is the essence of OCD: An obsession (Did I lock the door behind me?) leads to a compulsion (I should check the lock just once more). I also have intrusive, unwanted thoughts — I imagine loved ones coming to harm, often by my own hand. I might be having a perfectly pleasant conversation with someone when suddenly I picture what that person would look like with a bloody nose. Such thoughts, which usually barge into my head about once a day, are never anything I'd do or a reflection of my desires; they're simply the result of bad brain chemistry.
Nowadays, my symptoms remain relatively consistent — most are ones I've dealt with for years. I have a full-time job at a nonprofit organization, which gives me the sort of stability that makes them manageable. As I was growing up, however, every month was an opportunity for an exciting new cerebral nightmare. In elementary school, it was all about contamination — I went through two laundry loads' worth of towels per week on average, unable to touch one again after a single use. I couldn't touch doorknobs or light switches bare-handed — instead, I learned to open doors with my feet. Every trip to the bathroom was a 30-minute hand-scrubbing ordeal. A cocktail of antianxiety drugs, SSRIs and other medications helped me cope ... until I got to 6th grade.
Middle school is a universally miserable time, of course. For most kids, the changes in body chemistry that accompany puberty mean acne, growth spurts and raging hormones, but for me they meant the medications that kept my worst symptoms at bay stopped working. Suddenly I was back to spending hours in the bathroom. In school, I erased my math worksheets until they had holes in them because I couldn't abide stray pencil marks. Ignoring them was like trying to ignore an intense, persistent itch — despite my best efforts, I'd be vibrating out of my skin with nervous energy until I finally gave in. And I developed compulsions I couldn't connect to an underlying obsession. For instance, I started making strange noises in the back of my throat and shaking out my limbs at random moments.
As can happen in middle school, my peers embraced the time-honored social convention of building themselves up by tearing other people down. When they passed me in the hallway, kids would ail their arms around to mock me and sneeringly call me nasty names from across the classroom. At first I tried to hide my condition, but that proved impossible, so instead I tried to explain mental illness to them. But I was working under the awed assumption that understanding leads to empathy, which is rarely true for tweens.
Maybe my classmates were unable to grasp the concept of an invisible illness, or they just didn't care. But the grief they caused me only made me more determined to make people understand. Since I couldn't hide my OCD, I decided I would make it impossible to ignore, and I started talking about it all the time. I even began using it as an icebreaker in conversation with new acquaintances — I felt I had to issue a disclaimer before strangers saw me wrinkling my nose and wondered if they'd forgotten to apply deodorant that morning.
But even as I faced my classmates' ridicule, it never occurred to me to feel ashamed of my illness. For as long as I could remember, the people whose opinions I valued — my parents, my grandparents, my psychiatrist — had told me my OCD was not my fault, so when my peers tried to tell me otherwise, I didn't shrink back in shame: I got angry, and I got loud. And I used pointed humor to shut people up, telling one boy who insisted my constant fidgeting was a willful act designed to annoy him that I was doing it to burn extra calories.
High school was a big improvement over middle school: My fellow students were more mature and compassionate; I'd learned strategies to better manage my symptoms; and as I found that people were more willing to listen when I explained my condition, my jokes became less barbed. And in the years since, learning more about my OCD has helped me hone new techniques for managing it. Combined with a boatload of medication, this has helped enormously.
It was only five years ago that I learned that my specific subtype of the disorder is called Tourettic OCD, which is why I sometimes feel compelled to do things, like make strange noises, that don't seem connected to a particular obsession. These are actually tics: sudden, repetitive movements or sounds that I find really hard not to make. Most people think of Tourette syndrome as uncontrollable swearing, which is a real but rare symptom called coprolalia. But really, most of us just make weird sounds and ail a lot. OCD and Tourette syndrome often go hand in hand.
As much as I'm not shy about my OCD, it's a relief that my symptoms are far less noticeable than they once were. I've swapped out most of my more obnoxious tics for subtler behaviors — instead of pulling faces at my coworkers as I struggle to maintain control of my facial muscles, I'll blink hard. A recent chest cold left me with a lingering cough that has become a verbal tic; I try to swallow hard or perform some other, quieter alternative. But there are still challenges I have to deal with every day, such as finding a combination of medications that solves more life problems than the side effects (such as low sex drive and lack of appetite) create. Nobody really knows why or how certain drugs help, and it's daunting to be a human guinea pig: Every year I ingest thousands of milligrams of mind-altering, government-regulated substances, but that beats never, ever leaving my room. So, as with sampling new cuisine or getting hopelessly lost while backpacking in a foreign country, I suck it up and embrace the mystery as part of the experience.
Tourettic OCD is not who I am, though it has definitely shaped a huge part of the person I've grown into. There's a lot about myself that I love: I'm an excellent writer. I'm a thoughtful friend. I have a sharp and analytical mind. Those parts of me aren't going to go away, and neither is my Tourettic OCD. And I can live with that. What I refuse to live with is stigma. So I will keep talking about it. The more I talk about OCD, the more people understand mental illness and the more they feel able to share their own problems. The more visible our conditions become, the less scary they are. And the more I talk, the less likely that some suffering kid will be told, as I was told, "It's all in your head."