My Tourette Syndrome Story

I blinked a lot as a kid. Like, a lot a lot. And my head jerked, like a nod, only quicker and sharper and over and over again. And I grunted. I didn’t even know I grunted until someone pointed it out to me. I’m trying to remember the exact age. I can remember where I was when it pointed out to me, but I went to school with the same kids grade after grade. After a while, the memories run together. But I think I was eleven, maybe twelve. There were other tics, some brief, some embarrassing, some big, some small.

But I never swore. (At least, not involuntarily. . .)

If everything you read in the first paragraph made you think, “Oh, he’s describing Tourette syndrome,” you’d be right. But, after reading the second paragraph you thought, “Nope, never mind, he never shouted obscenities,” then let’s sit down, my friend. We need to chat.

I have Tourette syndrome. I wasn’t diagnosed with TS until I was a hair under nineteen. Until then, my tics had been largely categorized as bad habits. They were assumed to be behavioral, and as such, they were never presented to my pediatrician. Perhaps if I had been swearing like a sailor at the age of eleven, I might have been diagnosed earlier. None of my tics included involuntary swearing (coprolalia, for those of you looking for the official term for it).

I got questions people would ask why I was making noises, and in one case a classmate asked if I were doing a gorilla impersonation. The answer was of course “no”, but I also had no answer for what it is I was doing.

When I was eighteen, my mother, a teacher at the time, noticed a brochure on the desk in the school counselor’s office. I don’t know what it said, what the cover looked like or how it caught her attention, but it must have struck a chord because she started reading it and thought “This sounds like Scott.” A year later I had a diagnosis. And a sense of relief. What I had, the grunting, the blinking, the head bobbing and sniffing, the inability not to jerk my body around while lying in bed trying to sleep—these were not things I could control. These were not bad habits. They weren’t anything behavioral therapy could help. They were involuntary.

What was obvious to the kids I went to school with has not been obvious to the people I work with. Not a lot of people knew I have Tourette syndrome until recently. I am exceptionally good at masking it. But the thing about TS is that you have to let go of the control at some point. Otherwise it’s like a pressure value that keeps building up steam. Eventually, it’s going to find a way out.

Usually what that means is that, when I’m in public, I do the barest minimum to satisfy the itch. And when I get home, I let it take over. But if you watch carefully, you’ll see it. If you know what to look for. Like how I have to touch the mouth of a soda bottle discreetly to the tip of my nose before drinking. Or how my right hand sometimes sneaks up to my nose and, under the guise of scratching an itch, the flat of my index finger crushes the end of my nose. (Always the right hand. Never the left.) Or how I grimace when I do this. Or the ones no one can see but I know they’re there. Like clenching my abdomen muscles, or squeezing my right leg muscles from butt to knee. Or the grunting sniff I make when eating that makes dining such an unpleasant experience. That’s a new one, and isn’t it a joy. I’ve aspirated more food in the last year than in my first fifty.

And yet, this is who I am. And who I am is different from the next person with Tourette syndrome. No two cases are the same. Every person with Tourette syndrome has their own set of tics, unique to them. And while two people may both have an eye blinking tic, each one might then have a differing set of additional tics. One person might blink their eyes and bob their head, and the other might blink their eyes and shrug their shoulders.

Like the entire human race, we’re all unique. And that’s a pretty awesome thing.

I wanted to share my story here so that other people might be able to read it and understand a little more. I spent a lot of time hiding who I was. Kids can be pretty merciless. I didn’t want to have to explain it or answer questions. But that’s not fair, either to myself or to people who might like to know more. That’s why I’m telling my story here and now. Time to stop trying to cover it up. Tourette syndrome is part of who I am, but it’s only one part. It doesn’t define who I am. But to hide it is to keep part of myself hidden. And that’s exhausting. And unfair. So, there we go. My name is Scott, and I have Tourette syndrome.

If you’d like to learn even more, check out tourette.org.