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I Got 99 Problems but a Twitch Ain't One

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I was diagnosed with Tourette syndrome the summer before my junior year of high school. Sophomore year ended up being ridiculous with arm jerking, slapping, lip smacking, tongue clicking mayhem. It didn’t help that I went through two traumatic situations, including a bus crash with my track team. Granted, the symptoms didn’t just appear overnight. I had struggled with things since I was a child. When my parents got highly irritable about how I would shoulder shrug in public, my response was usually “I can’t help it.” I was even taken outside at a wedding and scolded for my physical inability to not move. Who could guess their child had a condition causing involuntary movements? To quote my favorite comedian of all time, fellow Touretter Samuel J. Comroe, “All kids have bobbly heads and do weird things.” It’s a pretty accurate statement.

However, once I got into high school and hit puberty, my body decided to have a field day and fight itself. My very first verbal tic, that I remember going “what the heck was that?” the moment it flew out of my mouth was “Hurry up, lady.” My parents were driving, and there was no one else on the road or on the sidewalk. I spent the last few years of high school getting bullied and harassed with no help at all. I felt so insecure all the time. Ironically, Tourette syndrome thrives in high anxiety. So while trying to suppress my tics for several hours a day at school I’d have explosive moments where I would full body tic, chuck my textbooks across the room and flail on the floor like a bad breakdancer (don’t quit your day job!)

I realized suppression wasn’t healthy — it was quite painful and seemed to just make things worse. We can sometimes suppress tics, but not always and it has its consequences. I had stopped paying attention in class altogether so I wouldn’t be a distraction and others could learn, and I wouldn’t be a distraction. Tourette Syndrome has no effect on intelligence — you may just need extra help or learn in alternative ways. I was in several advanced placement classes and had already done most of the basic course load. I finally did ask for separate testing accommodations. I couldn’t keep my grades up and flunk every test when I knew the content. I just wanted to focus on being quiet.

Eventually I was given those separate accommodations. Don’t celebrate just yet, it was sitting on a concrete floor outside the classroom in the hallway. However, it was still much better than sitting in a classroom full of my peers. I have had teachers bully me as well as peers, including one who said, “Settle down, twitcher” in front of the class. For a very long time I was not OK with myself. I viewed my Tourette syndrome, obsessive-compulsive disorder and anxiety as an enemy. Something I couldn’t embrace. Something I didn’t know much about, nor did I want to know anything about it. At a time when I wanted to hide, I was pushed out of my comfort zone daily. Looking back, this was a blessing. I am great when interacting with people, and I am not afraid of new people.

Most kids took sick days for colds and the flu. I took sick days because if I couldn’t button my jeans in the morning and I was already extremely twitchy and vocal, it wasn’t worth going in. There are many difficulties that stem from Tourette syndrome, and it’s different for everyone.

I wish I could have told my 15 to 17-year-old self it’s OK to embrace what I have. It took me a while to be comfortable with my disorders. I had a lot of help from people, some of whom I may never meet. I grew to embrace my Tourette’s by using humor from comedian Samuel J. Comroe. I was introduced to his stand up several months after my diagnosis. I realized I needed to change my perspective, because Tourette’s is a part of me. It always will be. So might as well make it fun and interesting.

I finally commented on Samuel J. Comroe’s Facebook page, letting him know he was an inspiration to me. He commented back and that really helped insecure high school me. Others have helped me be comfortable too. My friends adore me because I make them laugh until they cry. I love making others laugh — maybe someday I will become a comedian. I even had a college professor with Tourette syndrome. Meeting him made me stop apologizing to my other professors for any random noises I made in class.

In general, I just stopped apologizing. I did not need to feel ashamed for who I am. Ironically my symptoms slowed in class and in certain situations after that. It wasn’t on purpose and the best advice I can give to anyone, not just those with Tourette’s but any disability, is to be your own advocate, use humor and don’t get down on yourself. There are many things in my past that might not have been so harsh had I spoken up. The ADA allows you to have separate testing accommodations — utilize them and make sure they actually meet your needs. While it may be inconvenient for the school system, you’re there to learn too. Don’t ever feel ashamed over things you cannot control.

This is easier said than done. I m currently in a position in my life where I feel my hands are tied. I’m predominantly homebound because I am not a safe driver. I usually am one twitch away from hitting granny, so I won’t drive. You’re welcome, America. However, I am who I am. What I have makes me, me and let’s be honest I wouldn’t want it any other way, even if some days I can’t open a garbage bag. That’s OK — what are friends and a husband for. You must live with you. You are your best advocate even if at times you view yourself as your own worst enemy. Speak up and laugh often. I’ve got 99 problems, but a twitch won’t be one.

Getty image by SI Photography.

Originally published: July 5, 2018
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