We’ve all had mosquito bites. We know not to scratch them, but do anyway. Nobody gives you a weird look or treats you differently for doing so and often, it will spawn a conversation about a mutual hatred of mosquitos.
But what if instead of a mosquito bite, you had an ongoing urge to scrunch your eyebrows, shake your head and make a squeaking sound? You know it’s ridiculous, and fight with all your willpower not to, but enjoy a moment of relief when you finally give in. A second later the urge returns, and you realize that while you were distracted everyone was looking at you as if you just committed a horrible crime.
This is a glimpse into what it can be like living with Tourette Syndrome. It affects everyone differently, and contrary to what you may have seen on TV, most of us don’t run around swearing.
I was diagnosed with Tourette Syndrome about 23 years ago. At one point, I became so distracted by one of my “tics” that I stopped my bicycle in the middle of the road to satiate an urge to aggressively shake my head, with no regard to traffic. This frightened my parents and we went to see the doctor.
Meetings with doctors, teachers and out-of-town specialists followed. My parents did well to juggle all this while working and raising three kids. We learned together.
School was difficult. Some kids seemed uneasy, and some made a spectacle of mocking me. Teachers didn’t always understand. If I was upset, they would ask if I “took my pills,” instead of acknowledging any legitimate concerns or emotions I had. Other times, they thought I was rolling my eyes at them and chided me for being rude, not realizing it was another “tic” and I had no idea what it looked like to them.
I don’t blame anyone, we were all learning as we went, but it was more difficult than it had to be.
I slowly trained myself to hide or disguise my “tics.” Now it is an occasional distraction during stressful moments, and it doesn’t haunt me. I have an enjoyable life full of great people and healthy ambitions.
Tourette Syndrome is said to affect at least 1% of the population, and 90% of those affected have other conditions, such as ADHD, anxiety or OCD. When I think about what other families are going through I am glad organizations like Tourette Canada are working to improve quality of life through education, advocacy and research.
This year, I will be participating in the Trek for Tourette, a national fundraising event in support of Tourette Syndrome. I hope you will consider joining us or making a contribution.
This annual event returns to Sarnia on March 29. Please visit http://www.tourette.ca/trekfortourette or phone Brian White at 519-464-2585.
Adam Young is a husband, musician, digital media consultant and reluctant activist in Sarnia.