Living with Tourette Syndrome: what is it like?
Living with Tourette Syndrome: what is it like?
Living with Tourette Syndrome 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 bottom of the page). Still, I will tell you that living with 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 discovered I had Tourette's when I was 11. 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!.”
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Children teasing me because of my disability!
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 he suspected I had Tourette Syndrome and 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 went to the specialist and he immediately diagnosed me with Tourette's Syndrome 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 has taught me to be myself no matter what the circumstance."
Living with Tourette Syndrome as an adult?
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!”
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I learned to accept the fact that I am not different; Tourette's just means I am 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 often makes me the center of attention when I’m in a group and let out a bark or scream.
Speaking of Tourette Syndrome 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 Tourette's 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 braking tic again. The ladies at the table beside us were teachers from my school and knew about my barking 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 barking 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.
Living with Tourette Syndrome has taught me to be myself no matter what the circumstance. I have learned to be understanding and loving to other disabled people, 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.
"I learned to accept the fact that I am not different; Living with Tourette Syndrome just means I am unique!"
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 fewer 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 continues into adulthood.
"Tourette Syndrome is a neurodivergent identity in its own right."
Cheryl-Lynette Gilmore, the author of "Living with Tourette Syndrome," is an aspiring author from Merritt, British Columbia, Canada.