10 Things You Shouldn’t Say to Someone Who Has Tourette’s Syndrome

10 Things You Shouldn’t Say to Someone Who Has Tourette’s Syndrome

1.) “You’re really pretty/ handsome for someone with Tourette’s” or “You’re too pretty/handsome to have Tourette’s”

Yes. People actually say this. Or at least make comments like this online.

In responce to this, here are the words of a beautiful young woman named Megan who has Tourette’s:

“Are you saying that people who have disabilities or neurological conditions are not supposed to be aesthetically pleasing or to have a certain beauty that fits in what society finds acceptable? This warped sense of beauty? What if your child has a disability and you tell them that they are too normal or beautiful to have a disability? Imagine how they’d feel? And you know what? I have Tourette’s and I am gosh damn sexy, beautiful, confident, wonderful, amazing, compassionate, loving, caring, considerate, resilient, and strong-minded. Tourette’s has made me become so much more compassionate towards other people. Tourette’s has helped me learned cultural competency and enables me to connect with ANYONE at ANY TIME on a mental, emotional, and spiritual level. Now that’s beautiful.” 

2.) “I have this eye twitch when I get stressed so I know exactly what you’re going through.” 

From Jenn, a mother of two children with Tourette’s:

“Really? all day every day for weeks months and years? wow. You may want to get that checked out (depending on how long they have it). If its not something serious then politely change the topic. Some people don’t realize how they come across. My friends daughter says things like this ALL the time.. some days my daughter cries.. other days she will laugh.”

3.) “Can’t you just stop?” 

From Kerri, a mother of a 13 year old son with Tourette’s:

“I like to say to those people that if he (son, 13yo) could stop, he would. It bothers him a whole lot more than it will EVER bother you. It’s a lot like a staring contest: when you keep yourself from blinking for an extended amount of time, once you give in & blink, your eyes burn & you blink a whole lot more to ease the burning in your eyes. Same with stopping/curbing his tics. And no, he won’t stop.”

From Jo, an adult living with Tourette’s:

I often have a hard time getting people who do not have TS to understand why I can’t ‘just stop’. I liken it to not blinking. How long can you NOT blink for? Sometimes we have a certain degree of control over our tics, sometimes we have none and sometimes we can suppress for short amount of time but that tension then builds. So, if you did not blink for 5 minutes your eyes would become so dry/watery and stinging that when you were allowed to blink again you would blink uncontrollably and repeatedly to make up for the lack of blinking until your eyes felt better again. Yeah, that’s what it’s like to NOT tic.

4.) “Maybe if you disciplined your child more or if you weren’t such an anxious parent then they wouldn’t have Tourette’s”  

From Melissa:

“Tourette Snydrome is not something that can be controlled no matter what type of discipline is used. It’s a genetic neurological disroder”

From Brynn, a mother of a child with Tourette’s:

“I would say to them ” do you know what TS is? Do you remember how painful it was to watch your child be in pain as an infant and not be able to do a think about it? I live that everyday with my child, and yes that makes me an anxious parent, but not about her tics or her future. You see, I have raised her to be strong and be proud of all of who she is. What makes me an anxious parent are closed minded people like you that she will undoubtedly encounter in her life. What makes me an axious parent are the hopes that she shows herself as a christian to undiciplined opinions and words like yours.”

5. )”With your effort and attitude, I know you’ll get rid of your tics one day.” 

From Charlotte, an adult living with Tourette’s:

Why would you think that? I’m almost 64 and probably the only time my face will stop moving will be when I’m in my coffin!”

6.) “I wish I had Tourette’s too! Then I could go around swearing and saying anything I want to and I would never get in trouble!” 

From Jenn, a mother of two children with Tourette’s:

“This made me cry – just moved into our neighborhood.. the lady over at the church whose husband is the pastor said she wished she had Tourette syndrome to my son and I and then said because then she could take the lords name in vein. In that moment I was shocked. I smiled at her as if to say I cant believe you said that.. then I said I had to get going – thanks for the chat.. and we left. My son was so upset and wanted to know why I didn’t say anything to her especially since I always say something but I looked at him and said there are some people that are not worth explaining to..”

From Lauren, an adult living with Tourette’s:

“I have actually had that comment made to me by a man who had his Doctoral degree in Social Work, very educated. I explained to him that I was very hurt by what he said and i educated him about what it is like to have Tourette’s and that it is not just a cussing disorder. It was a good learning opportunity for him.”

7.) “You don’t have Tourette’s! You seen so normal. I’ve never even seen you tic.” 

From Darby, a mother of a child with Tourette’s:

“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, a mother of a child with Tourette’s:

“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”

8.) “Everyone has “habits”. If you have Tourette’s then everyone does too.”

From Heather, a mother of a child with Tourette’s:

“Habits do not prevent you from doing ordinary things like riding a bike, wearing roller skates or ski boots. Habits do not make you lick your lips until they are puffy and sore. Habits do not prevent you from sitting in a chair. Habits do not make your eyes blink so hard and often you can’t read.”

9.) “Don’t worry, I think I have Tourette’s too half the time” 

From Jenn, a mother of two children with Tourette’s:

“Wow. What exactly is it that you do that would lead you to believe you actually have Tourette Syndrome? ( one of two things will happen.. they will either have the symptoms or they wont – if they do then help them and if they don’t then be kind enough to lead them in a more appropriate disorder.. either with a medical name or like in my many circumstances a disorder called Stupidity”

10.) “You just need to exercise more, then you won’t be so hyperactive.”  

From Victoria:

“If that were true, then why do so many professional athletes still have TS? Although exercise helps, it will not cure TS. Same with removing nitrates and other processed food triggers- it will help, but will not cure the underlying disease.”

From Kerri, a mother of a 13 year old son with Tourette’s: 

“He (son, 13yo) is a runner & a swimmer. I’m sure he exercises more than you. It helps but does not make it go away.”

From Jo, an adult living with Tourette’s:

“I do two aerobics sessions a week plus a busy, on my feet job and I do voluntary work two mornings a week, am a single parent to two teenage boys, one with ADHD. I’d say I do my fair share of exercise…strangely I still have Tourette’s. Go figure.”

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