From the time he was a child, Dash Mihok knew he was different.
“I remember I was in karate class and I had to shake my head violently,” the Ray Donovan star tells PEOPLE exclusively about his first encounter with Tourette Syndrome, a neurological disorder characterized by involuntary movements and vocalizations called tics. “The tic was to shake my head violently. I had to feel the whip of my hair. When you’re 6, it’s a strange feeling.”
Mihok, who describes his condition as “the greatest itch you’ve ever had, times 5000,” travels the nation educating children and adults as a national ambassador for the Tourette Association of America.
The actor says the condition is misunderstood, thanks to its association in the media with uncontrollable swearing and screaming. “That’s a small percentage,” Mihok says. “And because of that, it’s easily made fun of. I don’t fault anybody, but I want people to know we’re normal, just like everybody else.”
Mihok, 41, grew up with two sisters with Tourette’s; his father also experienced symptoms throughout his life. But that did little to assuage his pain.
“School was very difficult,” Mihok says. “I was conscious of how I looked. And I experimented with a lot of different medications; most of them didn’t work properly without bad side effects.”
Despite the hardship, Mihok says he was determined to be a “regular kid.”
“I learned every day was a lesson in figuring out how to hide [the Tourette’s] and mask my tics into something else, or make a joke out of them,” he says.” I didn’t let it get me down.”
Now, Mihok has learned to live with and manage the disorder to his best ability, though it’s still a struggle: “Tourette’s is involuntary in that it is impossible not to do. And it’s torture to know what you’re doing and not be able to stop it.”
Still, Mihok credits the condition for some of his greatest personal strengths. “With Tourette’s, there’s this element of vulnerability and compassion and empathy that you innately possess because of the affliction,” he says.
At work, the actor, who has a tic that causes him to stare at lights, still deals with his condition on a daily basis. “When I’m acting and I have to remember my lines and put my mind in concert with my body, I don’t tic,” he says. “Then they say ‘Cut’ and I’m staring at the huge lights on set.”
Today, Mihok just hopes that his journey can help inform a new dialogue about Tourette Syndrome.
“I would love for the future to be, you come into a new school and you see a kid in a corner who’s twitching and you don’t blink an eye,” he says. “You just go, ‘Oh that kid has Tourette’s, and that’s cool.'”
Tourette Syndrome Awareness Month lasts until June 15. For more information, visit www.tourette.org.