A 31 Year Journey

A 31 Year Journey of Support and Friendship
Thanks to Tourette Association National Conferences

Guest Article from Ellie Jarvie

My story and my symptoms began in 1975, when I was 5 years old. While I had been ticcing for years, I was only diagnosed with Tourette at age 14. That’s when my family became involved in our state Tourette Association chapter. They gave us support during a confusing time, as well as a chance to interact with other kids with Tourette.

When I was 17, I went to my first national conference and my whole world changed: I met adults with TS, and for the first time was a part of a group because of TS, not despite it. Meeting other young adults who were not just coping but thriving was life-changing for me.

This all happened at an important time for me because my symptoms were at their worst; I had loud vocal tics and coprolalia. Finally I was surrounded by those who understood, and the tics just didn’t matter. I made two connections at that conference who have remained friends to this day.

Sharon Rifkin, then 23, was a student studying for her PsyD. She helped me re-learn how to be comfortable in the world with noticeable symptoms. I also met Jay Goodman. Jay and I went on to work at a camp for kids with TS in Pennsylvania. Over the years, Jay has taught me about living life to the fullest.

Today, I feel that I have achieved so much. I am on the board of the Wisconsin Chapter of the Tourette Association, have a 20-year-old daughter, was a foster parent for ten years, and am a master’s level clinical social worker. I know my sense of connection with others who are marginalized comes from my experiences with Tourette and my Tourette Association “family.” Just as I was helped, I know firsthand that helping others to build community can be the start of a new life.

Right now, my work is focused on peer support, where people with similar life experiences help one another — just as Jay, Sharon and I have done for over 30 years through the connections we made at the Tourette Association’s National Conference.