I was very fortunate in that not only was I raised by an educated, understanding mother, but also that I was diagnosed with Tourette when I was very young, allowing me to have a longer adjusting period.
I remember the day I told my mum what I was experiencing. She was downstairs doing laundry, and over the past several days or weeks I had been experiencing urges to shake my arm or torso or to press on objects, such as the table.
I went downstairs, perched on the dryer and told her what had been going on. She had an inkling as to the cause, so we immediately took me took the doctor and I was fully diagnosed and set up with a neurologist at Columbus Children’s within a year.
All through my growing up years, my mum supported me and made certain that that I knew how important it was that I knew that my TS was nothing to be ashamed of and that all I had to say to someone was, “I have Tourette.”
At first, it was a little awkward to tell people, and I even went through a period where I didn’t want people to know that I have TS. I felt like I was exposing myself and that if I told them, they may not accept me. I’m 23 years old now and over the past few years, I have been working hard to become comfortable with having TS — I had to learn that TS is not what I am, but rather it is a part of who I am.
Now I can say to anyone with confidence and a smile, “Yeah I have Tourette.” The important thing to take away from this story is that when one exudes confidence and comfortability people draw on that. In other words, when you’re OK with it, it helps them to be, too.
A little about me, since I’m new to the blog: I was diagnosed with Tourette Syndrome when I was 7 years old, a highly impressionable age at which a person is still learning rudimentary behavior. So instead of concerning myself with childish pursuits, as a typical 7-year-old would, I became a student of life with Tourette, a much more complicated endeavor that has continued into adulthood.
Now, having graduated from Wheeling Jesuit University with a B.A. in Professional Communications, I am continuing my study of life with Tourette, as well as pursuing a career as a wedding planner. Thanks for reading!
Read more from me on my Tourettisms blog!
That is totally totally awesome. Sounds like your mom was a great support to you. I’m curious if you tell people on an “as needed” basis only or if you’re just totally open. I ask because many people in my support group say that they don’t tell people their kid has TS as they don’t want to label them. I’m about the education. Thoughts?
I have heard of such parents, but I don’t believe that is a positive way to bring up a child with any such disorder. It teaches them that their disorder is something to hide and be ashamed of. I tic in front of people all the time. Mostly, I’m very open about the fact that I have TS, but if people don’t ask, then I don’t say anything. I always encourage questions, though.