Ellie's story

My name is Eleanor, but people call me Ellie. Right around the time I was turning eight, my mom noticed I was bobbing my head a lot, and making noises. My mom suspected Tourette Syndrome and she took me to my doctor who confirmed my mom’s suspicions. Although I was officially diagnosed with Tourette Syndrome at the age of eight, when I was younger, I often felt the need to have everything lined up in a specific way. I feel that Tourette Syndrome or even co-occurring symptoms were showing themselves before I was officially diagnosed.

I struggled with my diagnosis. I would often ask my mom, “why me?” It just didn’t seem fair.
But now sometimes I think my Tourette Syndrome makes me pretty awesome. I do still have days sometimes when the “why me?” creeps in.

I wasn’t sure what was going on, but once my parents told me that I had Tourette Syndrome, it was a relief to put a name to what I was experiencing. I knew that we were starting a journey where I would have a lot of questions and my mom was honest with me telling me she didn’t have the answers. I can understand that a lot more now, as I’ve learned that no two people with Tourette Syndrome have the same experiences. While similar, everyone’s journey is very different.

I knew that things would be different at school. My mom would meet with the school administrators and talk to my classmates about Tourette Syndrome. The hope was if I was upfront with my Tourette Syndrome, my classmates would be more understanding. That didn’t always happen though. One classmate ran around at recess yelling, “Ellie has Tourette Syndrome!”, and I’ve had to deal with being bullied. I have some accommodations in place to, as my counselor said, “level the playing field.” Sometimes I feel that these accommodations make me stand out. I can have a hard time with that because I am just like any other student, and I want to be seen that way.

I have learned that there are co-occurring conditions that can make school challenging for me. I work hard and do my best and not let these co-occurring conditions hold me back. I want to be treated like any other student. Sometimes I can struggle, and my tics are very frustrating when I’m trying to do my homework.

As I have gotten older, I have decided to not talk to my classmates as a whole about my Tourette Syndrome. Although maybe they mean well, I feel sometimes my peers don’t understand what it's like for me to live with Tourette Syndrome. It gets frustrating that any little move I make, I will be asked if it's a tic. I have had peers act like they are having a seizure and say that is what my Tourette Syndrome is like.

I have told people about my Tourette Syndrome. I have explained what Tourette Syndrome is, and that sometimes I will have motor and/or vocal tics. I have found friends who are aware I have Tourette Syndrome, but do not treat me any differently.

I have become more comfortable with myself, and I have the courage, strength and pride to stand up and speak about my Tourette Syndrome and also educate people about what Tourette Syndrome is and what it isn’t.

Even though my life has had its challenges, I don’t let that stop me from doing the things I love. I enjoy acting and singing. I’ve had the opportunity to sing the National Anthem at a minor league hockey game and recently landed the only solo in my upcoming school concert. I’ve been able to participate in plays through a local theater company. I also work hard at school and maintain a great GPA.

Tourette Syndrome is so much more than tics. I want to share that with people to show that there are a lot of struggles that people with Tourette Syndrome have, and it isn’t always noticeable. Everybody’s Tourette journey is different, and they have their own unique set of challenges. Sometimes it seems unfair, and it can be tough feeling different from my peers. Sometimes my co-occurring conditions bother me more than my tics do. Sometimes it seems like too much all at once. I do my best to have a bright outlook on life and I know I have a very wonderful future ahead of me. And above all, I remember to be kind.