By Peter Frantz Pendell
I am Peter Frantz Pendell, a youth advocate and the New Jersey Center for Tourette Syndrome’s Youth Council Co-Leader. This is my first year with the organization, and I have loved every minute. Over time, I have gotten more confident with my TS, which has led me to feel better about talking about it and its role in my life. Initially, I did not want to talk about my TS, rather I pretended it did not exist and pushed it away as much as possible. I was afraid that I would lose friends, disappoint family, and be looked at as a kid with TS instead of just a kid. Luckily, I was never treated differently by family and friends because they knew me well enough to see past my Tics.
Unfortunately, other people seeing me for the first time would stare, talk to each other under their breath, and sometimes blatantly call me out with either names, pointing, or laughing. It hurt, and the fear of standing out made me change some aspects of my life to try to hide them. An example is that I grew out my hair to accommodate and shield my motor tics for my eyes, so it would look like I was moving the hair out of my face. However, as I grew as a person, with the support of my family and friends, I realized that I was not just “the kid with Tics,” but rather a kid who plays sports, loves seeing friends, tries hard in school, plays videogames, and so much more, who also has Tourette Syndrome. When I realized this, I did not get nervous when people saw me; I owned it and took it in stride.
Throughout my time having Tics, I went to a cognitive behavioral therapist to help find ways to combat the Tics causing me the most discomfort. I worked at my Tics, trying to stop the ones that were a genuine inconvenience to my daily life. I worked with her for years and finally got to a place I was comfortable. When she saw my progress with my TS, she asked me if I would be willing to talk to someone who was recently diagnosed. I gladly agreed. He was a young kid and extremely nice. However, he was recently diagnosed and was worried for the same reasons I was when I first got diagnosed, and was generally anxious about what was going to happen. I talked with this kid for a while, not about TS, but about soccer, school, and other things that we both enjoyed. I found that addressing the TS is not the only thing that can help. Rather just being there as another younger kid with TS helped him tremendously.
After our meeting together, my therapist told me that he felt more confident and happy with his TS than he had before. Just meeting with him and hearing that it made him feel better caused me to immediately love helping others with what they are worried about, especially TS. After that, I heard about the NJCTS and knew that it was something that I would love to do. I started with them, finding ways to spread awareness for Tics and presenting. I enjoy my time with the organization and finding ways to show support for Tourette Syndrome as a whole.
People are much more than their TS diagnosis and helping everyone see this makes advocacy work extremely satisfying for me. Anyone who sees someone having a hard time can help.
Resources:
Learn more about the NJCTS Youth Development program and how to become an advocate
