7 Things I Wish My Loved Ones Understood About Life with Tourette’s— 8.25.2025
I’ve been living with Tourette Syndrome for over 40 years and have learned a lot in the last year since my late-diagnosis. I now have language to share my nuanced experiences with the world. Since what I have is typically a punchline, promoting Tourette’s awareness feels relevant right now. Here are seven things I wish people understood about living with Tourette’s!
1. The tics can be debilitating… and getting past them can be too
I bet if you know people with Tourette’s, you know that our tics can be really distracting. If they’re distracting for you guys, imagine how they are for us! It can completely disrupt my train of thought and physically interrupt what I am doing. Learning the skills to interrupt the instinct to tic is really difficult and requires a lot of focus, so that also can disrupt what I am doing. It’s worthwhile to learn how to not tic through therapies like Comprehensive Behavioral Intervention for Tics (CBIT), but it is a lot of work.
2. It’s painful to tic
Think about a time when you had to do the same thing over and over again in a day, for instance at the gym or work or something along those lines. The next day, those muscles are sore from over use. Well, for people with Tourette’s we are constantly using our muscles when we tic, and we feel that soreness. It can be really hard to develop the skill to stop ticcing and let our muscles rest.
3. I have to be mindful all the time
And when we do develop that skill through something like Comprehensive Behavioral Intervention for Tics (CBIT), it takes conscious effort to keep interrupting the tics. So even if I am letting my face muscles rest by not ticcing, I am consciously thinking about not ticcing and that is a mental load almost as taxing as the pain of ticcing. I am constantly deciding to rest my face and the associated muscles, because it does not come naturally to me.
4. Ticcing can be dangerous
Alright, so. I said Tourette’s wasn’t going to kill me. But Tourette’s did cause me to break my ankle on my honeymoon. I always said that my contacts were dry and I fell down the stairs. The rest of the story is that when I wear my contacts, my eyes get really dry. When my eyes are dry, I blink a lot. When I blink a lot, it causes me to tic more, as hard blinking is one of my tics. Hard blinking triggers the complex series of tics I go through, including nose crinkling, tongue thrusting, sniffing, facial grimacing, and so on. When I am in a tic storm, I cannot walk, focus, listen or really do anything. I was in a tic storm like that when I fell down the stairs in Mexico. When I’m on the treadmill at the gym, I have to hold on to make sure I don’t fall if I start ticcing. I’ve also broken eggs in my hands during tic storms, which made for messy clean-up. Lots of people with Tourette’s have similar experiences of injuring ourselves while ticcing.
5. Judging the tics doesn’t stop them
It just makes them worse. It was miserable growing up being made fun of constantly and laughed at. I’d turn around to catch people blinking like I blink, laughing at me. This made me more self-conscious and anxious, which caused me to tic even more. Fighting and judging ourselves for ticcing just makes the entire experience even more stressful. The first step to taking back control is to accept that these tics are part of who we are. Suppressing tics (which is different from CBIT) can make the tics worse when they start up again. This would happen to me when I was a kid, where I would do everything I could to suppress the tics during rehearsals or presentations at school, only to tic uncontrollably as soon as rehearsal or the presentation, or what have you, was over. If you don’t have Tourette’s, the most important thing you can do for people in your life who do have Tourette’s is to accept them for who they are so that they don’t have to worry about what you think about their ticcing.
6. Just because I don’t swear doesn’t mean I’m faking it
The most common stereotype of people with Tourette’s is yelling out swears and slurs. While this is a tic some people have (called coprolalia) and those people definitely deserve support, this one stereotype is not the only way Tourette Syndrome manifests. Understanding the broad range of what Tourette’s can look like ultimately makes the world a better place for everyone. To be diagnosed with Tourette’s you have to have at least two motor tics (e.g. eye blinking, nose crinkling, neck stretching, leg kicking, etc.) and at least one vocal tic (e.g. throat clearing, coughing, sniffing, animals sounds, swearing, etc.). So coprolalia is definitely a variety of vocal tic, but not the only one. According to the Tourette Association website, only about 10% of people with Tourette’s have their vocal tics manifest as coprolalia.
7. Tourette’s is rarely just Tourette’s
There are many other neurodiverse conditions that can come along with Tourette’s. These include ADHD, OCD, autism, learning disabilities, anxiety, mood disorders and sleep disturbances to name a few. Girls and women are frequently not diagnosed with these conditions despite having the symptoms, meaning that we might not get pointed to the same resources boys and men are directed to. What the outside world sees as uncontrollable movements or sounds is just the tip of the iceberg of what the person who has Tourette’s deals with everyday.
These have been just a few statements I wanted to share with you about my experience with Tourette Syndrome. There’s more where that came from and I will talk more about these and other misconceptions in future posts. Thank you for reading and for Facing Tourette’s with me!
