Living with Tourette Syndrome

The symptoms for me started early. As young as 7-years-old. Watching back old home movies, I can see myself showing signs, but back then we didn’t know exactly what was happening. Fast forward to six years later, and I had many, many signs of Tourette Syndrome. I had just moved with my family 16 hours away from everything I knew, to a whole new state. The stress of moving across the country, starting a new school, and battling this disorder that I didn’t even know I had yet, my symptoms were extremely intense. At 13-years-old, you’re still trying to figure out life. Your body is going through a lot of changes and the world is very confusing. Add a neurological disorder on top of that, and you can imagine the stress. It reached a breaking point where my parents actually sat me down and asked me to stop. I told them I couldn’t. I didn’t know why, but I couldn’t. They began to do some research and I was taken to Yale Hospital in New Haven, CT where I underwent several tests and they determined I had Tourette Syndrome. Since TS is very rare in girls, I became a guinea pig. I had dozens of MRI’s, scans, and tests in a few year times span.

In the middle of all of this, I was navigating being the new kid in school. Bullying is an epidemic in schools, and being the new kid AND having a weird disorder, I was target #1. I was mercilessly bullied by the boys in my school because, to be honest, middle school age boys are jerks. I was very thankful for the group of friends that I had who would come to my defense but the bullying never stopped. It followed me all the way through high school. I understood it. I didn’t like it, but I understood. Tourette Syndrome is not a known disorder and many people only know what they see in the media. The disorder is often used as the butt of a joke. The character yells a profanity or twitches and the audience laughs. It began to make me angry. Tourette Syndrome seemed to be the only disorder that was made fun of. I didn’t see people mocking someone with cancer, autism, Down’s syndrome, and various other diseases and disorders, so why was mine being mocked? I made it my mission from that point on to educate people. If people asked about my life, I am always honest and share about this rare disorder.

So what’s it like living with TS? The best way I can describe it is, say you have an itch. Every part of your brain is telling you scratch that itch. The more you resist, the more itchy and uncomfortable you become. Tourette Syndrome is an involuntary neurological disorder. The tics I’ve experienced have changed over the years, some more intense than others. With age, I’ve learned to keep it mostly under control, but the smallest incident can trigger a flare. If I have an extreme heightened emotion, mostly stress or something upsetting, is usually when I can be seen having the most tics. When I am comfortable, happy, content, and relaxed I am able to keep everything under control. But it is a minute by minute daily struggle. Certain tics can cause aches and pains, and some have more OCD tendencies than can disrupt my daily life. I have done my best not to let it affect my friendships and relationships in my life and don’t let it stop me from acquiring jobs

Having Tourette Syndrome is a challenge and I used to say “why me?” but now I am happy to say “why not me?” I look to educate those around me and anyone who has a genuine interest in learning about this disorder.

Do you know someone with Tourette Syndrome? I am always happy to share my experiences over the last 17 years battling this disorder and if I can help someone who also has TS, then I have done my job.