Life with TS: Before and After Diagnosis – Caitlin F.

Caitlin was a first place winner of a 2023 NJCTS Scholarship Award. 

This was the essay she included with her application.

I have Tourette’s syndrome. These are the words that have been playing in my mind since I was diagnosed a few months ago. Tourette’s has been part of my life since I was about 7 or 8 years old. It started off with a mouth-widening tic and then a shoulder and head tic. Although I had seen my pediatrician about the tics, the doctors didn’t have any concern. Over those next 7 years I would generally have one tic at a time whether it was doing something with my eyes, face, arms, legs, making noises, or swallowing in my throat. It was before my sophomore year of high school when the tics became more complex and started to affect my face and body at the same time. People would make comments and the tics became distracting. At this point, I knew that something was off and I began researching Tourette’s syndrome. Previously, my tics were incorrectly thought to be anxiety. That was when I was almost certain that I had Tourette’s
syndrome. During my sophomore year, I saw a neurologist that performed a brief exam and heard my symptoms but didn’t mention anything about Tourette’s. It was only at the beginning of my senior year, after waiting 6 months to see a different top neurologist, that I would be properly diagnosed with Tourette’s syndrome and Obsessive Compulsive Disorder (OCD).

It was difficult at first and I was tempted to allow this diagnosis define who I am. But it is not who I am. I am a strong young woman, a conqueror. My motor and vocal (non-verbal) tics have taken control of my body most especially in the past few years. After my diagnosis, I have taken control by having sessions with a cognitive behavioral therapist who teaches the techniques to combat the tics, OCD, and other co-occurring conditions. I have never allowed my struggles to prevent me from reaching my full potential. During my high school career, I have successfully taken all honors and AP classes even with my condition undiagnosed until September of senior year. I have volunteered at Holy Name Medical Center since junior year. Over the past two summers, I have worked at a uniform store where I was a standout employee
and I’ve been invited back for this summer. I am blessed that I can safely drive as not all people with Tourette’s have this ability. My kindness, courage, and resilience have allowed me to become a stronger person and advocate. To me, Tourette’s is not a disability but another hurdle to jump over and opportunity for growth. Although I was not the best runner, I ran track freshman through junior year during the winter and spring athletic seasons. I love volunteering at Spectrum for Living where we put on dinner dances for developmentally delayed adults. I will be raising more awareness by presenting a scientific lecture about Tourette’s syndrome to the Science National Honor Society to which I am a member. The long struggle to get my diagnosis has made me determined to advocate for those who may be struggling in similar ways.



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