It's not a devastating disease that causes me to add a swear word or two to every sentence. Nor is it an extra "feature" of my brain that I can turn off at will. In fact, for the last few years the disorder itself has not been causing me much stress at all, but the reactions of those around me definitely are, and I'm sure many other Tourette's sufferers can relate. There isn't a lot of media coverage for this condition--but there are plenty of unrealistic, fictional portrayals like that South Park episode and the Tourettes Guy from YouTube. So much of the fight is left up to people like me, an ordinary guy with the ability to create websites. This page might seem a bit rambling, but keep in mind that I was diagnosed with Tourette's six years ago, and I've never written a word about it--so I have a lot to say.
Imagine that you have a mosquito bite on your body somewhere. Every time you think you've forgotten about it, it starts to itch again, and the urge to scratch it keeps getting stronger until you give in. The itching goes away, only to return seconds, minutes, or hours later.
Now think of this process, but all in your mind. That is kind of what it feels like to have Tourette's Syndrome. Throughout the day, for no reason at all, you get random urges to do random things. The "random things" (tics) vary depending on the person, but they can be as simple as twitching a muscle in your face or as complex as moving your whole body or saying a word or phrase. Using random profanity (coprolalia) only occurs in about 10% of all cases. Tics can be suppressed, but that will make them more severe later. The impulses come from malfuctioning circuits within the brain, so they can't be cured without surgery, but relaxation and medication can reduce their severity and frequency. I rarely have had tics while working on a focused task like taking a test, driving, playing video games, or writing, but I'm not sure if this works for everyone.
The media often emphasizes the swearing aspect of Tourette's, while disregarding all of the other possible tics one can have. While this can be humourous, it also has a negative effect in the real world: when faced with a person that really has Tourette's but not coprolalia, someone might think they have a more severe condition, or are just "acting up" on purpose. Just ask the substitute teacher that asked the whole class if I was retarded, or the church pastor and the school principal that kicked me out, or the person that used a hacked Facebook account to call me a "tard". Tourette's does not affect one's emotional or mental well-being, but it can still make life hard for a person when mistaken for another disorder that does.
It's hard to change the mind of a nation, but it's not impossible. If everyone that knew someone with Tourette's helped to spread the word, either by blogging, writing, making websites, or just linking to pages like this one, we would be getting somewhere. That's probably not going to happen, but wouldn't all of those fictional characters with "Tourette's" be funnier if people saw them as having a disorder that was exaggerated to the point of being ridiculous, rather than just having a disorder?