What is Tourette syndrome?

What is it like to have Tourette syndrome?

• What is it like to have Tourette syndrome? Am I even referring to it correctly? Is it 'Tourette' syndrome, or 'Tourette's' syndrome? This condition seems to be really misunderstood, and I would like to have some insight as to what it is like to have it. Any information would be appreciated, and I will not neglect to select a best answer!

• Answer:

  I'm so glad you're interested in learning what Tourette's is really like! Most people just stick with the stereotypes. To answer your first question, I've seen it both ways. Personally, I say Tourette's and Tourette's Syndrome. It makes more sense to me since Tourette was a guy's name so the possessive form makes sense. TS can be a downright pain. Depending on the person, it can be mild, moderate, or severe. People with Tourette's have things called tics, which can be either motor or vocal (both must be present for a diagnosis). Motor tics can be anything from blinking repetitively to jumping like a frog. Vocal tics range from throat clearing to (in rare cases) swearing. It's important to note that very very few people with Tourette's swear. This symptom is called coprolalia. And these people do not want to say the words they say. It just happens and it's very embarassing. This is also the most sensationalized symptom (South Park, anyone?). Never ever assume someone has coprolalia just because they have Tourette's. As for what it's like to have TS, I can explain what mine is like, but it's different for everyone. Before I tic, it's like a tension or energy builds up inside me, and I have to let it go somehow. Sometimes I can control how it's released, and sometimes I can't. A lot of the time I can suppress my tics for a while, but not everyone can do this. Tics are like sneezes. You know they're coming, you don't want them to come, but eventually you just have to release it. Other times (more rarely), I have no warning that a tic is coming, and it just happens, like a muscle spasm. It can be hard to have TS in public, especially in school. Even though my friends know I have TS, I don't like to tic in front of them, much less anyone else. But of course, the stress of keeping tics in can be too much sometimes, so I either discretely let them out in class or I go to the bathroom and tic there. Personally, I find it helps to make jokes about it once in a while. But be careful, even if your friend with TS makes jokes themself, it's not always welcome for others to do the same. It depends on how comfortable your friend is with their Tourette's. I don't mind, but others might. If you see someone ticcing, please don't stare. That's the worst for a person with TS. They feel like they can't tic because it's embarrassing and others will stare. If you just go on like it never happened, that means the world to us. If you're interested in learning more, I highly recommend the HBO documentary "I have Tourette's but Tourette's Doesn't Have Me."