It's OK to Ask About My Tourette Syndrome

As a young child, I was constantly told by adults and other children that I was “different.”

Sometimes, when people pointed out my differences, they focused on the good things. More often, they seemed to focus on how I didn’t act like other children. My coordination was poor and I was very bad at sports. I blurted out random nonsense and I often dropped things for no reason at all. Sometimes I’d fall into things or trip over nothing. As I got older, people started to notice my facial tics and how I could never control how often I blinked my eyes. A lot of people assumed I was lying all the time because of my hands touching my face or my inability to make eye contact. 

This followed me to adulthood. I tended to hang around online where my awkwardness wasn’t obvious. I still had trouble making friends and had been through hundreds of awkward job interviews. Even though I wanted to do something about what my body and mind were doing, I wasn’t sure there was a cure, much less a diagnosis. Sometimes, I would be kept up at night simply wondering what was causing my pain. Muscle tics are painful to me, especially in the face and hands. Emotionally, I was constantly hurt that no one would trust me simply because of physical movements that I had absolutely no control over. I felt depressed and suicidal. I felt like I would never have close relationships with “real” people.

Until a doctor casually mentioned that I might have Tourette syndrome (TS), I was lost. I had wrongly assumed my tics were caused by depression and anxiety and that it was all in my head. After researching, I realized it was likely the other way around and that a lot of my anxiety and depression came from my experiences living with TS. At first, it was hard to admit something I had very little control over was affecting my life in such a profound way. Over time, with help, I learned to accept TS for what it is and not to be ashamed by it. 

I still feel awkward most days, but I have learned I am very open to people simply asking me about my tics and random odd noises. I would rather engage in a conversation than be stared at and whispered about. It really is OK to ask! It is therapeutic for me to engage with people and hopefully share some information that they didn’t know. If you have TS, know you are not alone. It is embarrassing at times, but you shouldn’t feel shame over it. I want to engage with you, too. I want to talk with you and share similar experiences and explore different ones. I want you to know about my experiences. It is through shared knowledge that we learn and grow. Maybe you aren’t at the sharing stage yet and that is OK. It took me a very long time to be comfortable in my own skin. TS may be a monster sometimes, but it’s one that can be put in its place.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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Thinkstock photo via guruXOOX