“What’s the worst that could happen if you stop hiding?”
If I was going to lead a successful life socially and professionally, Tourette Syndrome would not be in the conversation. I was so certain that if anyone important (colleagues, bosses…. girls) knew I had TS, the misunderstanding and diminishment of my capabilities would blow all of my chances.
That line of thinking began when I was roughly 11-years old, in middle school, when establishing your “cool” took a lot of hard work and one little snag — like tripping down the stairs, spilling soda on your pants or, god forbid, an episode of uncontrollable sounds and movements — could set you back years, if not eternally. Which is why I kept a lid on my TS and crafted ways to mask my tics or blend them into normal routines, even as the subterfuge could be exhausting and often unsuccessful. As of this writing, I’m 38, and it wasn’t until earlier this year that I opened up about my Tourette’s.
Yeah, my amazingly supportive fi ncé already knew, and obviously my family knew. My closest friend knew, too, though we really never talked about it (my choice). But no one else, at least not definitively. Letting it out wholesale was one of the best decisions I’ve ever made.
I started the Tourette’s Podcast in early 2018 after my brain asked me a couple straightforward questions: What’s the worst that could happen if you stop hiding? And how’s everyone else in the Tourette world doing?
“It just hadn’t occurred to me in my adult life that I could talk to other people with Tourette Syndrome and learn from them.”
How to self-accept, how to explain TS to coworkers, how to handle this-and that. But it also didn’t occur to me that so many fellow Touretters were in the same hiding places as me, not confident enough to come out per fear of ridicule or derailment, and that the simple act of talking or flat-out venting to one another could go a long
way. For me, anyway.
So I started a Twitter account, called it @tourettespod, and messaged people with “Tourette” in their bio to ask whether they’d be interested in recording a conversation about their experiences for a weekly TS podcast. I was certain I’d get just a few yesses, if any, and that it would go nowhere better than a nice but brief exercise of talking and connecting. Quickly, though, I had a long list of people — both closeted about their tics or wide-open about them — waiting to be interviewed. The energy for awareness and undoing that terrible feeling of isolation was huge. Plus, it was a podcast— a relaxed, pressure-freemedium for talking about virtually anything.
On each episode, I talk with someone somewhere else in the world (as far away as Australia, so far) about their background, their careers, their diagnoses, choices to medicate or not, whether they’re open about TS, how they’ve handled awkward public situations, their creative interests and everything else that could pass through the lens of Tourette’s.
Since I have Tourette Syndrome, guests know they can talk freely without worry that they’re wandering into a producer’s sensationalist trap. “By Touretters, for Touretters,” I guess. And I love that I’m the underling of the show, taking notes and learning from the people I get to talk to. Every single episode has helped my life.
“I now feel way less isolated and fully proud of my TS.”
Thanks to the dozens of people I’ve interviewed to date, I now feel way less isolated and fully proud of my TS. What’s better is I receive a lot of email from listeners saying the same, just through listening to people share stories that are startlingly similar to their own. A good number of people have told me they’re publicly embracing their tics and comorbidities for the first time ever. And it’s not because of the podcast. It’s how all of these pieces fit together. I’m just glad I wised up enough to accept myself as it happens.