“You can’t have Tourette’s, you don’t curse.”
“You can’t have Tourette’s, I never see you tic.”
“You can’t have Tourette’s, you’re normal.”
“You can’t have Tourette’s, you get good grades.”
Or the most popular-
“I never would have guessed you had Tourette’s!”
I hear every one of these phrases all the time. I try not to let them bother me, but they make me a tad bit uncomfortable. Most people with TS have a mild case. I lay closer to the moderate/severe end of the spectrum, just based on frequency of tics. Just because you can’t see me ticcing doesn’t mean I’m not! I probably average about 2-3 tics per minute, but most of mine aren’t very visible. I tense my stomach muscles, crack my knuckles, shrug my shoulder, twitch my eye and blow air out of the right side of my mouth. I’m constantly in pain, so when people downplay my Tourette’s it kind of trivializes that pain. I know people don’t mean to be offensive. In fact, they probably think they’re making me feel better by making me think they don’t notice it. I have long accepted my TS, so telling me it’s not noticeable doesn’t make me feel much better.
But let’s be honest, there’s not exactly a “comfortable” way to talk about Tourette’s, so I’ve come up with a list of things you can say to someone with TS to make the conversation less awkward:
1) I love your shoes! Are those Jordans?
2) what’s your favorite broadway musical?
3) what is your opinion on the current state of the economy?
4) have you ever used Tourette’s as a pick up line?
Ok , maybe not that last one. But all of the previous questions are game. Why? Because they’re questions that make me feel like my personality and opinions come first, and my TS second.
I don’t mind talking about my TS. In fact , I’m quite open about It. But I like to do it in a way that doesn’t victimize me or make me feel inadequate. Yes, I’m in pain most of the time. Yes, I have Tourette’s. The best way you can make me feel comfortable about my TS is by acknowledging that it exists and that it sucks, and then ignoring it altogether.
That might have made more sense in my head…