Recently the Tourette Association Wisconsin Chapter asked me to speak at their conference. To prepare, I spoke with several adults who grew up with siblings with Tourette Syndrome (TS), including Ellie Jarvie, an advocacy specialist with Disability Rights Wisconsin in Madison, WI who has TS and her younger sister Michelle Jarvie Eggart, Sr Lecturer in engineering at MI Tech University.
What was it like growing up?
Michelle: Ellie is my older sister, so I’ve never known a time without her. Growing up, I always idolized Ellie because she read to me every night.
I picked on her and she picked on me. One time we were walking on the road and other kids started picking on Ellie and I remember being so mad. As teens, I became aware at the Mall that the world was not kind to Ellie.
When we’d go to restaurants Mom passed out pamphlets to educate people who were staring at us.
Ellie: As a kid, I remember wanting time by myself without a little sister hanging around. All I ever tried to do was blend in and all my sister wanted to do was stand out. We would physically fight. I teased her about being short.
Do you recall when you learned of the Tourette diagnosis? What was that like?
Ellie: I was diagnosed when I was 14. Getting the diagnosis was amazing. I am a reader so I read all about TS. I found a phone number and I called for more information at age 14. Mom got very involved in the state TS chapter and attended national conferences. The Tourette story is complex so having a diagnosis, a label, opened doors. Since my diagnosis, I’ve made lots of connections and lots of friends
thanks to the Tourette Association.
Michelle: Before the diagnosis, I remember being confused. Can’t she stop? Is someone lying? Why are mom and dad yelling at her? I wanted to protect her. But I also wanted her to stop. After the diagnosis, it was amazing to see Ellie’s self-confidence grow because she suddenly had friends who understood TS. The diagnosis explained why … and it wasn’t her fault.
What’s been the hardest thing about living with Tourette Syndrome?
Ellie: When I was a young child, there was no information and I was often misdiagnosed. I had to take heavy doses of medications; feeling drugged, the weight gain, it was a struggle.
Michelle: There was lots of fighting at home before Ellie’s diagnosis. We thought she was doing every behavior on purpose. Mom was also fighting with the school for Ellie to stay in class.
Has your experience with Tourette Syndrome influenced your career choices?
Ellie: Definitely, TS has influenced my career choice to pursue social work. My advocacy spirit fits me in my position with Disability Rights Wisconsin.
Michelle: I know our mom would be proud of you, Ellie. TS did not influence my choice of career. My dad was an engineer, so I’m an engineer. But Mom’s advocacy and having watched Ellie struggle completely influences the way I do my job and my perspective as an educator. I don’t make it harder for students or make students struggle to be heard.
What’s been the best part of living with Tourette Syndrome?
Ellie: For me, it is the connections I’ve had with various people that I never would have without TS. The
TS experience has helped me understand others with different abilities and better able to help them function in a world not made for us and may not want us.
Michelle: I can’t imagine having another sister. The gift I got is this; I got the confidence to be done with what society thinks. I care more about what I think about me. I don’t care if the whole world is staring. I’m less likely to dismiss people for their difference. I never noticed this about me until I’m with my peers and they don’t have that gift. I remember I was at an airport in Oregon. A man there was tic-ing. The stewardesses were going to call the police. I was able to explain what was going on.
What advice do you have for others living with Tourettes?
Ellie: Connect with other families and the Tourette Association. Don’t let TS
hold you back. Don’t forget the siblings. One of our new members that attended your presentation, Harriet, told me “my son was diagnosed with TS a week ago and now I feel support for both my kids”. Siblings are so important. No other organization is doing what WisconSibs is doing.
Michelle: If you become a Tourette family, or any other disability, remember you are still a family. Traditions and togetherness are so important. TS is just one part of your family. Find to do fun things. Our parents were persistent, and it paid off. Find resources and keep advocating for access to medical care.
By: Harriet Redman
Credit is given to Wisconsibs: Sisters & Brothers of People with Disabilities. Thank you to Harriet Redman for the piece!
