So Much More Than Tics

Currently 24 years old, I first had symptoms of TS at the age of 5 and received my diagnosis of TS at age 14. Tourette Syndrome is a neuro-developmental disorder characterized by uncontrollable actions called tics. Tics can be motor (eye rolls, hitting/slapping, neck twitches, jumping, etc.) and vocal (repeating words/phrases, throat sounds, yelling, etc.) These tics can be incredibly exhausting in many ways, both physically and emotionally.

While tics are a huge part of TS, the experience of living with TS goes way beyond the tics but involves many co-occurring conditions. This looks different in every person, but for me, the interaction between TS, OCD, Anxiety, and Depression all contribute to the experience I have.

Of the many challenges I’ve faced, perhaps the most difficult is dealing with the constant social misunderstandings of our condition. I have been yelled at in public, kicked out of restaurants, bullied by my peers, stared at, and told that I couldn’t be successful professionally. Every day, I wake up and leave the house in fear that these negative situations will occur. Some thoughts race through my mind: “I hope nobody is staring at me.” “What is wrong with me”? “Why can’t I just be normal?”

Living with TS is so much more than our tics. Learning how to accept and live in a world that can often be unkind to those who are different and grappling with the emotional challenges of doing so is difficult and part of our experience.

THIS WEEKEND, the TAA’s National Conference was an absolutely beautiful showcase of the magic that happens when you bring together anyone who TS has impacted. It was a heartwarming weekend, from those living with TS to health providers, researchers, parents, and anyone else whose lives have been influenced by TS. I had the opportunity to present the intersection between TS & culture and on disclosing TS in our daily lives, and attend many talks by our lovely community members on Treatments for TS, new scientific research and developments, dating with TS, making an impact in the workplace, advocating for yourself in academic settings, and so so so many more topics!

It is so beautiful to see everyone ticcing loud and proud. It brought me to tears many times just seeing so many people able to freely be themselves and finally experience a place where we are not ashamed to have TS, but we are proud!

Thank you to everyone at this conference for the great discussions; remember, what we experience is valid and it’s okay to admit that we have many struggles. Our experiences make us who we are and will open the door for us to make the change we want to see in the world.

Thank you to the TAA for all the support since my first event in 2014, my involvement has helped me grow in so many ways, and you have all helped me see that we are so much stronger than we think. I am so excited to be starting medical school at UCSF this year in hopes of pursuing my interest in becoming a pediatric neurologist.

I cannot wait for the day to give back to the TS community as a health provider. While it’s a long road ahead, knowing that I have so many people in the TS community rooting for me makes me feel encouraged and excited to start this new life chapter. If you made it this far, thank you!

Please support TS Awareness month by wearing TEAL, spreading awareness to your friends and family, and supporting the TAA. I will leave a link below to our website, where you can learn more about TS and make donations to the organization, which will help us continue doing everything we can to make the world a better place for people impacted by Tourette Syndrome.

To everyone I met this weekend, you are all fantastic, just as you are. I am so proud to be associated with this community. Thank you for making me feel less alone. We are uncontrollable, UNSTOPPABLE, and together we will change the world!

God bless us all!

*Michael originally shared this entire article on Facebook.

Michael’s aunt, NANCY C. RAZON, wrote an article about him and posted his TED TALK on February 1, 2022, entitled, THERE IS ALWAYS A FLIP SIDE. See the category, Gifts & Graces.