What is it like to live with Tourette Syndrome?

by Cheryl-Lynette Gilmore

Living with Tourette syndrome: this is what Tourette's feels like. A paper collage of a person standing in the middle of a bright yellow spotlight.
Caption:

Living with Tourette syndrome I learned to accept the fact that I am not different, I’m just unique! It just means I have a disorder that, many times, makes me the center of attention when I’m in a group and let out a bark or scream.

Credit:

©jozefmicic / Adobe Stock

What is it like living with Tourette’s? It is having to tell people that I am tic-talking. They usually laugh. It’s not funny to me, but whatever. I’ve been living with Tourette Syndrome for 30 years now, and I still get people laughing at me or judging me because I make weird noises or movements. It doesn’t usually bother me anymore. “Usually” is the operative word here.

I won’t go into a long medical definition of this heart-wrenching disorder (you can find an explainer at the bootom of the page), but I will tell you that Tourette Syndrome is basically a malfunction in the brain that causes sufferers to make what are called tics. This can include making noises, grunting, screaming, swearing, hitting yourself, screaming, or shoulder shrugs. There are tons of tics that you can have, and everyone is different. The thing that makes it Tourette’s is that these tics are uncontrollable—we have to do them.

Living with Tourette Syndrome as a child?

I first found out I had it when I was 11 years old. I was making weird sounds, grunting, screaming, and shaking. I felt so stupid, because no matter what I did, I couldn’t stop these outbursts. I was told I was trying to get attention. I was told I was stressed out. I was even told I was possessed by the devil. Doctors, teachers, family, friends, and strangers judged me, telling me to just “stop doing them!”

After about six months of living in this hell of a life—where I was told to leave restaurants and other public places because I was “disturbing other customers”—I finally found out what I was suffering from.

I was getting allergy tests done with a pediatric allergist when he took my parents into his office and said that he suspected I had Tourette Syndrome and that he wanted to send me to a specialist.

My parents were nervous to tell me, not knowing how I would react. But when they told me, I broke down in happy tears. I wasn’t crazy! There really was a reason why I was making these noises! I was so excited to find out that there really was a disorder that explained all of what I was going through and how I felt.

“I deal with things that most people don’t, but that doesn’t make me stupid or crazy.”

I went to the specialist and he immediately diagnosed me after discovering that I had over 100 different tics. I was shocked that all the things I had felt the overwhelming need to do were actually tics. There was even medication for it!

Living with Tourette Syndrome as an adult?

I tried three different medications before settling on one in particular. It didn’t give me complete relief, though, and I continued to suffer judgment and teasing from other children and even adults for many years. It hurt the worst when adults made fun of me.

After about 10 years of living with tic-talking—as I started calling it—I finally learned to look at the funny side of things. I realized that, yes, it did sound kind of weird to hear a loud scream in the middle of watching a romantic scene at a movie theater. I learned to laugh at myself, shrug and say, “I’m here!”


Read more: “But you don’t seem bipolar”


I learned to accept the fact that I am not different, I’m just unique! I deal with things that most people don’t, but that doesn’t make me stupid or crazy. It just means I have a disorder that, many times, makes me the center of attention when I’m in a group and let out a bark or scream.

Speaking of barking, I remember one particular time when I was 21 years old. My mom and I were in a fast-food restaurant when I started barking like a dog, which was one of my tics. This elderly lady walked up and started asking people where the dog was, yelling, “That person with the dog should be kicked out!” She was making a big scene, so I decided to have a little fun with her.

When she turned her back towards me, I purposely did the barking tic. She whirled around and stared at me. I just smiled politely at her. She continued to yell, and when she turned again, I grinned at my mom and did the tic again. The ladies at the table beside us were teachers from my school and knew about my tics. They were trying so hard not to laugh as I continued to tease the old woman, until she threw her meal at one of the restaurant workers and walked out of the restaurant, still yelling about the dog she couldn’t find but was sure was there. After she left, the whole restaurant broke into laughter and applause! I stood up and bowed.

Having Tourette’s has taught me to be myself no matter what the circumstance. I have learned to be understanding and loving to other people with disabilities, and I have learned that I am a good person, even though I sometimes screech or bark in the middle of a restaurant. I’ve also learned that God loves me just the way I am, and in His eyes, I am an awesome woman despite my disability.

A medical explanation: what is Tourette syndrome?

Tourette syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements, and vocalizations called tics.

The disorder is named after Dr. Georges Gilles de la Tourette, the French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

The early symptoms of Tourette syndrome are typically noticed first in childhood, with the average onset between the ages of three and nine years. Tourette syndrome occurs in people from all ethnic groups; males are affected about three to four times more often than females.

200,000 Americans are estimated to have the most severe form of Tourette syndrome. As many as one in 100 exhibits milder and less complex symptoms such as chronic motor or vocal tics.

Although Tourette syndrome can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens. Improvement usually occurs in the late teens and continuing into adulthood.

Source: National Institute of Neurological Disorders and Stroke


Want more stories like “Living with Tourette syndrome: this is what Tourette’s feels like?” Subscribe!

Hey, now that you’re here! Want more inclusive media? We do too. Consider becoming a Patron of Uncomfortable Revolution. You’ll help support Disabled artists and writers, AND we send free gifts. Doing good was never so easy.
Become a Patron!


Author’s note: When I was diagnosed in 1988, Tourette Syndrome was thought to be a psychiatric disorder. In fact, if I had been born 20 years earlier, I would have been put in an insane asylum. It wasn’t until 1999 that Tourette’s was finally recognized as a legitimate medical disorder and we knew what actually caused it.
Keywords: what Tourette’s feels like, living with tourette syndrome,  tourette syndrome

 

 


Slightly blurred photo of Cheryl Gilmore. She is sitting in front of a bookshelf and is wearing an aqua blouse. Cheryl has long hair, wears glasses, and is smiling.
Article by Cheryl-Lynette Gilmore

Cheryl-Lynette Gilmore is an aspiring author from Merritt, British Columbia, Canada.

Discussion

Discussion

Click here to read our Comment Policy