I want to start by thanking my wonderful wife Kara for encouraging me to share a part of my life I prefer not to share with anyone. And the few times I have shared it with people, it was only because of some prodding. And even now, I wonder if I should even share this.
I have Tourettes. There, I said it. To be more specific, I have Tourette Syndrome, which the Pennsylvania Tourette Syndrome Alliance states is “an inherited, neurological disorder characterized by tics – involuntary, sudden movements, or vocalizations that occur repeatedly” (reference page).
Background on the Syndrome
I want to provide a brief background on Tourette Syndrome, and then share what it’s been like having the condition. My primary source was the Gale Encyclopedia of Mental Health (3rd edition; Volume 2).
Like many neurological disorders, it is a spectrum disorder. This means there are some people who have such a mild form of the disorder that they are not even diagnosed, while for others, it can significantly interfere with their day-to-day lives. I would say I am on the mild side of the spectrum. Onset of Tourette’s can generally occur between age 2 and age 18. The mean age for onset is age 7.
People with Tourette Syndrome can display a variety of motor and vocal tics. Common tics that have affected my life include throat clearing, coughing, “hoot” sound, and eye-blinking. And it is very important to state that we cannot control these actions. They just happen. There are also simple and complex tics. Again quoting the PA Tourette Syndrome Alliance, “ [s]imple tics generally involve only one muscle group or sound while Complex tics involve several muscle groups or several sounds.” Another important thing to know is that the tics a person displays can (and do) change over the course of their life. Lastly, stressful situations and stimulants can increase the frequency and severity of tics.
So what causes these tics to occur? It is likely a combination of genetic and environmental conditions. Various studies seem to confirm an imbalance of the neurotransmitters dopamine and serotonin are involved. And other conditions, like obsessive-compulsive behavior, ADD, ADHD, and anxiety, appear to be associated with Tourettes. I often wonder if my challenges with managing anxiety are due to me having Tourettes.
There is no cure for Tourette Syndrome. If you have it, you have it for life. There are treatments available. But they are more for managing the condition. Treatments help control the symptoms, and can include educational methods, psychological methods, and/or medication.
Living With the Syndrome
Now that I’ve shared some background on Tourette Syndrome, I wanted to share some of my experiences living with the condition.
I was diagnosed during my elementary school years. I think my parents were concerned that I had Asthma. I don’t remember having any bad experiences during this time. But then came middle-school.
I had been attending a small private school in rural southern Illinois. After 6th grade, my parents divorced, and my mother and brother moved to Pennsylvania. I stayed in Illinois with my father.
During seventh grade, I started attending public school. Things were very challenging for me in this school. I struggled with not having half my family around, moving to a new house, and trying to make friends in a new school. My tics were probably more pronounced due to all the major life changes that had just occurred.
The other students definitely noticed my tics and then the teasing began. I don’t know if the teachers were oblivious, lacked proper training, or just didn’t care, but they did nothing to intervene. They failed me.
During one math class, a student kept making the sounds I was making to tease me. I was considering taking my textbook and beating him with it until I knocked him out. Fortunately, I didn’t but sometimes I wish I had. I would have gotten suspended or expelled but at least I would have stood up for myself. The school clearly wasn’t interested in protecting me.
After seventh grade, I moved to Pennsylvania to live with my mother and brother. Once again, I switched schools. It turns out middle school students are mean, no matter what state you live in.
Throughout middle and high school I got teased for having Tourettes. Fortunately, the teasing lessened with each passing year. My 8th and 9th grade years were the most challenging. Once again, I wonder if the teachers and administrators just didn’t know how to deal with it. I’m not excusing them, though. I feel like they failed me to some degree.
On a positive note, while living in Pennsylvania, I got connected to some decent specialists. They started me on a new meditation that helped manage my condition better. I also met with a counselor for anger management. The anger which was caused by the bullying.
The next phase in life was college. I honestly don’t remember Tourettes interfering with college that much. And I don’t remember telling many people I had the condition. I told close friends, but that was about it.
After college, I moved back home. I worked full-time for a year, and then attended graduate school. But when I first moved home, back in the summer of 2008, I was unemployed. This was a stressful time. I needed to make my medication last though, so I started cutting the pills in half. As a result, my tics were more pronounced. My mom confronted me about it. Thankfully, she helped me pay for the medication. And I began taking the regular dosage.
Early in dating Kara, we had a conversation about my condition. She suspected that I had a condition. I don’t remember much about our conversation, but I do remember it wasn’t as nearly awkward as I was anticipating.
And that brings us to today. I don’t think I’ve told anyone that I’ve met since moving to the Harrisburg-area that I have Tourettes. There’s been a few times I’ve used the “I have allergies” excuse to explain my tics.
Ultimately, I am writing this to share my story about living with Tourette’s Syndrome because I want to educate others. I don’t want there to be any shame surrounding the disorder. It is a part of who I am, I can be a positive voice for others who might share this or similar mental health issues.