Prevention & Awareness

What the F*** is Tourette’s Syndrome?

Today’s post was written by Active Minds intern Nate Caspari, who is currently a student at American University.

Here’s a fact that might surprise you: Most people with Tourette’s Syndrome do not swear uncontrollably. The condition that is characterized by spontaneous profanity is a symptom of Tourette’s called Coprolalia, and is actually quite rare. In spite of this rarity, you should know that people with Coprolalia don’t want to act the way they do, and would likely prefer if you didn’t constantly use their life altering and incurable condition as the butt of a bad joke without understanding what they’re going through. Another fact you should mind is that since Coprolalia is very rare among Tourette’s patients, if somebody curses you out and blames it on their Tourette’s, there’s a fairly good chance their condition doesn’t actually cause swearing. They probably just don’t like you. ¯\_(ツ)_/¯

I was 12 when I realized I couldn’t stop laughing. I was riding my bike, soaring down a hill near the local train station when suddenly I started laughing and couldn’t stop. I thought it would go away, but it didn’t; it got worse. I would laugh no matter where I was or who I was with. I didn’t want to; I certainly didn’t find anything funny. Slowly, my laughter devolved into nervous giggles. When my vocal cords couldn’t handle that anymore, I began to squeak and chirp. I noticed I would sniff uncontrollably. I started to blink multiple times a second. Sometimes I would try to actively suppress it. That worked until I couldn’t breathe, and a pressure I couldn’t describe was building in my chest and my forehead, begging my mouth to let the tics out.

This is what Tourette’s syndrome feels like. It is persistent and powerful. It’s embarrassing and strange, and holding back a tic hurts, a lot. Nobody knows exactly what causes Tourette’s or how it works. What we do know is that it tends to present itself anywhere between early childhood and the end of adolescence. It affects about 1 in 360 people in varying degrees of severity. In its mildest and most common form, it can cause slight facial twitches or occasional vocal tics and may be so mild that even the patient will not know they have it. In its most severe manifestation, Tourette’s Syndrome will cause constant uncontrollable motor and verbal tics that can make living a normal life impossible. Some people take medicine to control it, others do not. Some people will develop symptoms of Attention Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, Depression and Anxiety disorders- others will not. Some people will grow out of it, some people will have Tourette’s for the rest of their lives.

More than almost any other mental illness, I understand why there is a stigma around Tourette’s syndrome. It’s bizarre, and for my own part I can understand why seeing a big guy like me walking down the street making weird noises would be disconcerting. If I saw myself doing that, I would probably look at myself strangely too. If you’ve never had tics like this, it’s hard to imagine what having them could be like. It’s simply far too easy to label somebody with Tourette’s as crazy, or just plain ridiculous. Tourette’s is honestly pretty weird, and in a way is also kind of funny. I know I’ve made more than my fair share of jokes about it. However, the stigma and the jokes seem to be all anybody knows about Tourette’s syndrome. It’s a condition that everyone seems to know of, but fewer people understand life with it. Truthfully, I am not the best person to explain that, so I have linked below some resources about Tourette’s syndrome. In addition, I’m willing to bet that you know at least one person with Tourette’s syndrome. If you can, talking with them may be your best resource. Avoiding stigma is hard and if you take the time to learn about it, I’ll just say we’d really f***ing appreciate it. Website for the Tourette Association of America The Facts About Tourette’s Syndrome Life With Tourette’s Syndrome