Tourette Syndrome runs in our family. Many of us have varying degrees of TS and the not so pleasant accompanying OCD, ADHD, and anxiety. It comes with quite a stigma and I don’t see open conversations of it often. I see a lot of comedy stabs in movies, but no real depictions. When something isn’t spoken of, it makes getting diagnosed with it feel like something one should be frightened of. If there is a stigma associated then you worry about what others will think or say or assume.
Tourette syndrome is a neurological condition. Vocal tics can be as minor as throat clearing or little mouth noises barely noticeable. Motor tics can be as minor as rubbing your fingers or toes together. What is happening on the inside of the body is that agonizing part. You can become easily over stimulated and your skin may feel crawly. You may be tactile sensitive and if someone touches you, you may shoot through the roof. This over stimulation of the nervous system creates often times anxiety. OCD is an entirely different ball park. If you calm the OCD you will calm the Tourette tics. Cognitive behavior therapy for OCD is HARD but we found it successful. It is hard to feel calm with Tourette Syndrome. Unfortunately the more stressed you get, the more tics come out, then you become stressed over the tics, and it’s an endless cycle.
Some people don’t even know they are doing a tic. My daughter will tell me I am doing something and I won’t have even noticed (you are not supposed to point out a tic or it could get worse, but if I am making a weird noise and she thinks something is wrong she will bring it to my attention). Sometimes I do know I am doing them and there is nothing I can do to stop them. Sometimes if I do an “alternate” such as tapping my leg, then I can stop the clicking I may want to do with my tongue. Night time is the most I will do a tic because I am in pain from the muscle disease, I am trying to calm myself down to sleep, and somehow they just surface.
Most people don’t know I have a mild case of TS. Some of our family have more severe cases and much more visual tics. Some have even less. It is a frustrating condition ESPECIALLY if you have other health issues, PTSD, and are working on recovering from trauma like I am. It’s confusing, am I having a PTSD panic attack or is this just Tourette syndrome anxiety flair up. It is not always easy to know. It doesn’t matter what is causing the anxiety though. The treatment is the same and the way others need to react is the same. With calm, reassuring, you’re ok words of comfort.
Just know, if you’ve been diagnosed with Tourette Syndrome, it’s ok. You aren’t alone. There is support at the Tourette Syndrome association of America. They will help with advocates, help with IEP or 504 accommodation plans, and help connect you with support groups. Or you can just message me! I’m always available to support and listen to anyone who is struggling.