Back when I was still in high school, I was diagnosed with Tourette’s Syndrome.
When most people hear Tourette’s Syndrome they think of someone yelling swear words, like Tourette’s guy. I don’t have a problem with Tourette’s guy, I understand our culture has stereotypes. Sometimes it hurts a little when people make fun of the disorder. I realize that it doesn’t come from hatred, but a lack of education. So let me shed a little light on what it’s like to actually have the symptoms.
When the doctor told me this is the condition I had, I can almost say I was relieved. Relieved that I could finally put a name to what was wrong with me. All the strange stuff I did that didn’t make any sense, like shaking my head back and fourth and violently straightening my elbows.
As relieved as I was to know what was up, it was also a little devastating. I deal with strange and painful tics every day. A tic is a movement my brain makes my body do, like tapping a surface or blinking my eyes really hard. It’s not something that happens automatically, it’s more like an itch. I have to perform the tic. It’s pretty much impossible to control, and believe me I’ve tried.
Besides making every day tasks difficult and making me look like a crazy person sometimes, ticcing has ruined the thing I love to do most. Drawing.
Whenever I draw, I have a tic where I have to press the pencil really hard into the paper. You can see the dents and dots, and this is why I draw mostly with a tablet. The poor thing has taken a beating, but it’s the only way I can erase my mistakes, carefully. I can’t stop this tic and I’ve had it for years, even before I was diagnosed. I took medicine and that helped for a while, but I couldn’t take it for a long time because that medication had long term effects. I feel like it really stunts my artistic ability and is the thing that saddens me the most. Usually I don’t even finish drawing because I’ve already ruined it.
I’ve also been through a lot of jobs. The real reason I leave most jobs is because I can’t handle the stress. I know there are a lot of people who have bad anxiety that makes it hard to keep a job, and I can respect that. But I want you to realize that when I’m stressed, the stress manifests itself physically and violently. Sometimes it goes so far that I’m hurting myself. I do not believe in self harm, but I can’t stop my tics.
I’ll give you an example.
Today I had to put in my two weeks at a restaurant I just started working at. There is more than one reason I had to quit. My grandfather is sick, and I want to move in with my grandparents for a little while. This is the reason I gave my work but honestly I am relieved to leave this job. The people are absolutely amazing, but the environment is very fast paced. The stress has gotten me to develop a new, awful tic. They will change sometimes. For a few months I was clacking my teeth together, and it hurt my mouth so bad. When I started this job, I began to shake my legs very hard. I shake them as I sit typing this and I would shake them as I stood at the front of the restaurant and as I walked people to their tables, praying they wouldn’t notice. It hurts so bad to stand and I think I’ve pulled a muscle in my calf. When I sit down to breathe and my coworkers ask me if I’m ok, I’m too ashamed to say that my legs hurt. Everyone’s legs hurt, we’ve all been standing for hours.
I think about how much better I would feel if I could just stop shaking them. But Tourette’s doesn’t work that way. I can’t stop. In fact whenever I think about it I have to perform my tic again. I’m so sore and I wish it could just stay still, and have physical peace wash over me.
I’ve gone through so many jobs through the years. I worked at a glass shop but whenever I set down a piece of glass on the shelf, I had to set it down harshly because I had this pressure tic. I’d broken a few things this way. I felt bad so that I quit my job there, so I didn’t break any more of the owner’s things. I also worked at a wonderful coffee shop where I pressed the cups very hard against the edge of the coffee pot, and burned myself with hot coffee more than once. These are just some examples of the troubles I’ve had at work.
Hopefully when I move to my grandparents, I will find a job that doesn’t give me as much trouble. But I always say that when I’m job hunting. I don’t feel right about applying for disability because I know there are people out there who are more disabled than I. I wish I could just make art for a living, and have been trying really hard to get my career going. I have no hope for a cure because, for as many people who make fun of the disorder, not enough people have it to expect a cure anytime in the near future.
I’ve always hesitated to post about my condition because I don’t want people to feel sorry for me, and I know we all have our problems that we have to deal with. But this has been on my chest for a long time and I wanted you to know what it’s like to live the life of someone who has Tourette’s syndrome.
Be thankful, you wonderful human being, and stay beautiful and kind. I love you!