TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING
If you don’t know me, my name is Sam. I’ve struggled with tics from a very young age, but was only diagnosed 3 years ago.
When I received my diagnoses, my whole world changed. Suddenly, there was a name. A name for the noises and movements I’d been making for years. I hated them because I had no control. It was like there was a little person inside of my brain, and I had to do what he said or I’d face consequences. I’d get migraines, or I’d get so tired I couldn’t focus. Anger would fill inside me. And sadness would too. I couldn’t control my emotions and it felt like my life was being swept away from me.
When I was diagnosed, however, that changed. I no longer felt so stressed to hide my tics. Although I’d still suppress, as that was what my body was used to.
When I was diagnosed, I was able to get the help I needed. My mom found an advocate, who worked with the school to get accommodations. And once I transitioned into middle school, we no longer needed him. But it helped greatly. And now I have a positive relationship with my school. If I need a break, I can take one. If I need a snack in the afternoon, I can have one. If I need fidgets, I can use them. If I need a wheelchair, I can use it. And I’m not ashamed.
“A wheelchair, why would you need a wheelchair for your Tourette’s?”
Well, it’s not always because of that. This winter, I struggled with several paralysis episodes that lasted 3-4 days. I could feel my legs, but they felt so heavy, like an invisible weight was on them. It hurt so bad to move. Sometimes, I couldn’t even hold my own head up. I was like I was a wet noodle.
At first, we thought it was blocking tics. And that’s what the hospital agreed with too. But then, my old neurologist brought up Conversion Disorder, also known as Functional Neurological Disorder. Because of this, I periodically lose the use of parts of my body. I had a few episodes way back when I was diagnosed with Tourette, but we figured they were paralysis tics. But they “went away” for about 18 months. In reality, I was hiding them. They weren’t severe, but when it acted up, I’d hide it. Because I was scared.
Remember how I said old neurologist? Yeah, I stopped seeing her. Her mindset was: If you’re in a wheelchair, you should be in a mental hospital for a month.
Yeah, weird right? She seemed to want to solve everything. She also diagnosed me with Conversion Disorder, which states that my paralysis is all psychological when it isn’t. She wanted me in therapy 3 times a week and physical therapy 3 times a week. She seemed to forget that I have terrible anxiety. To the point that thunderstorms could give me panic attacks. So missing that much school was not an option for me.
Finally I stood up to her, and told her how I felt. Which of course she attempted to gaslight me and blame it on the masks. That was my last appointment, which triggered a 3 day long tic attack. But I was so glad that I wouldn’t have to deal with her anymore.
Now, I have a new neurologist. He knows that it’s all on a “what you can manage” basis. He was perfectly fine with signing the handicap placard paper work, while my old neurologist was pissed my mom even asked for one.
I’m so happy now. Although I will admit I struggle a lot still. But I’m happy. My doctors support me. My parents support me. My school, teachers, and friends support me. And while I run across the occasional uneducated jerk, I’m in the mindset to deal with it properly. Because I know that this is who I am. It’s been a long road, and there is definitely more to come as I am seeking ADHD and Autism diagnoses. But I am not afraid to show who I am anymore. I’m not afraid to show my tics and I’m not afraid to show up to school in a wheelchair.
When I was diagnosed, it changed my life for the better. And I urge anyone with Tourette or another tic disorder who can get a diagnosis, to get one. Because it can make your life a whole lot easier.