Let’s Talk About Tourette Syndrome
I have Tourette Syndrome.
When I was 10 years old, I developed a vocal tic out of nowhere. One week I was fine, and the next, I was making a small vocalization every 3-4 minutes. A couple of months later, I started involuntarily shrugging my right shoulder as well. My tics have changed and evolved throughout my lifetime, but for the last 14 years I have not experienced a single tic-free month, and in all likelihood, I never will again.
Tourette Syndrome is one of those things that pretty much everyone has heard of, but very few people know anything about. When most people think of Tourette Syndrome, they picture an adolescent boy uncontrollably swearing in public, or a little boy consumed by bizarre physical tics. But that’s not the reality for me, or thousands of other people with Tourette Syndrome. So here are the facts:
- We don’t actually know how many people have Tourette Syndrome. Around 0.3% of the population is currently diagnosed, but researchers estimate that about half of all cases of Tourette Syndrome go undetected. Either way, it’s one of the rarest of the neurodevelopmental disorders.
- Boys are three to five times more likely to have TS than girls. I’ve actually never met another woman with Tourettes, only men. It appears in all ethnic groups, but Caucasians are twice as likely to have it as any other ethnicity.
- Tics can be “simple” or “complex”. A simple tic is one that includes only a few body parts - things like sniffing, eye blinks, or shoulder shrugs. They usually take place only on one side of the body. Complex tics involve multiple body parts and may be a set sequence of events, like clapping, snapping one’s fingers and then shrugging.
- The majority of cases are mild. Most people, including myself, experience only simple tics. There are people who’ve known me for years who still don’t know I have TS. Tics also tend to get milder as you get older.
- Most of us don’t swear uncontrollably. Coprolalia, or random outbursts of swearing, occur in less than 10% of cases. If I swear, it’s because I fucking well chose to.
- Tics can be suppressed, but it sucks. Suppressing tics is physically and psychologically uncomfortable. It’s like trying not to scratch an itch; you can do it, but over time, the urge to do it grows until it’s all you can think about.
- Tourette’s almost always comes with a second diagnosis. 80% of people with Tourette’s have a second diagnosis, usually ADHD or OCD. Those three disorders seem to run in families together, and appear to be strongly genetically linked. I was unlucky enough to get all three. Tourette’s also appears alongside anxiety and sensory processing disorders.
- Tics wax and wane. Tics tend to be subtler when a person is calm, and at their worst when a person is stressed out or excited. My tics are usually mild to unnoticeable, but my mother says that when I was filling out grad school applications I was twitching so badly I looked like I was on drugs all the time. Tics will also change naturally over time; an eye-blinking tic will fade away, only to be replaced by a wrist-rolling tic that “fades in” to take its place.
- There is no cure for TS, and it’s largely considered untreatable. People cannot learn to stop their tics through therapy, and there are no drugs specifically designed for Tourettes. There are some drugs that can stop tics, but the side effects are so horrific that they are only considered as a last resort for extremely severe tics.
- Tourettes does not impact intelligence. On average, people with Tourette’s syndrome actually have slightly higher IQs than the average population.
- Tourettes can cause physical damage to your body. Doing repetitive motions over and over and over again for years is hard on you. I’ve been rolling my right wrist as a tic for about two years now, and I sometimes wake up with a tender or swollen wrist. There’s nothing I can really do about it.
Tourette’s Syndrome isn’t necessarily something that needs to be cured; it’s just the way we are. My Tourette’s, along with my OCD and ADHD, are impossible to separate from my personality at this point. It’s just who I am. So if you have Tourette’s, or if your child has recently been diagnosed, don’t worry! With a little bit of understanding and patience, people with Tourette’s grow up to lead full lives. We’re just a little twitchy, is all.
