What are some things you shouldn’t say to a person when they tell you they have Tourette’s? For starters don’t say “Man! That’s so awesome! You can swear all the time and get away with it! I wish I had that!” What are other things you think people shouldn’t say?
This blog is going to start a top-10 countdown of the things you just shouldn’t say to someone who has TS. So what would you say in response to this comment from another person who you have told that you or your child had Tourette’s?
Counting down toward No. 1, here’s No. 4:
You don’t have Tourette’s! You seen so normal. I’ve never even seen you tic.
From Darby, the mother of a child living with TS:
I hear this all the time. Tourette’s is so misunderstood even by medical professionals. My response would depend on the situation. Sometimes I don’t have the time or energy to educate others and I just say, “Well, you don’t see us much and how it impacts our lives day to day and 24/7.” If I have time, I try to give them some insight and specifics. But, usually they still think I am making things up to excuse my kid’s “behavior.” They don’t get it. And inevitably they want to know why I just don’t make him stop. I recently had someone tell me I should duct tape his mouth shut. People can really be ignorant. I don’t waste anymore time on these people. We try to surround ourselves with people who are kind and understanding. The rest of them have no place in our lives.
From Mandy, the mother of a child living with TS:
Certain things make my sons tics act up — excitement, anxiety, etc. He doesn’t tic all the time.
From Asher, someone living with Tourette’s:
I can assure you that my tics are very visible to me. They consistently provide adversity in my life, and thus, I can also assure you that I have Tourette Syndrome (and I was diagnosed).
From Jen, a mother of two children with Tourette’s:
Ah I get this all the time. The answer always depends on the person saying it. I usually say this, “Yeah, my kids don’t really tic around others. They try really hard to suppress them in front of strangers or people they know but are uncomfortable around. Take a look sometime at their YouTube videos… lots of tics on those! :) Maybe you can look it up, its not uncommon for people to not notice. And yes they are normal, thanks.”
From Kerri, a mother of a child with Tourette’s:
My son (13) tics constantly & people say this to me all of the time! I tell them they just don’t know what tics are & that not all of them are screaming, in-your-face tics. I tell them he always tics, they just may not realize it. Once I describe the tics he is currently having, they usually say, “Oh, I’ve seen him do those! Those are tics?! I had no idea.” I don’t mind educating people when they say it out of a place of genuine ignorance & not stupidity (yes, there is a difference!). Otherwise I would respond with one of the above comments.
From Heather, a mother of a child with Tourette’s:
TS isn’t always like Hollywood portrays. Often there is much more going on you can’t see.
Look for No. 3 tomorrow. And in case you missed the ones that came before, here’s a list: