MOUNT VERNON — Many of us have a nervous “tic,” an action or habit that shows itself only when we’re nervous, but try to imagine not being able to control that tic. That’s what it’s like living with Tourette Syndrome. People with the disorder got to spend some time together this weekend at Camp Tanager, to show support for one another.
Saul Lubaroff of Iowa City was diagnosed with Tourette’s in 1979, a time he calls “the dark ages” for people with the disorder.
“Very, very few people knew what Tourette’s was,” said Lubaroff.
However, he said with advancements in the medical field, and more events like this that spread awareness, things are much better.
“Now, in 2014, people really seem to have a grasp or they know what’s going on, or they know somebody or knew somebody who has it,” Lubaroff explained.
Better, but not always easier. Jackie Kuntz said Tourette Syndrome is often misunderstood, and in some cases, still misdiagnosed. It often comes “packaged” with other problems like anxiety, or in her case, obsessive-compulsive disorder.
“When I was growing up, sometimes they would call it ‘ants in the pants,’ or nervousness, and lots of things like that,” said Kuntz. “I started having tics when I was 6 years old, throat clearing and things like that, and OCD manifestations, but I wasn’t diagnosed until I was 22, so it took a really long time.”
Sometimes the tics are physical, other times, verbal, as in Lubaroff’s case.
“Sometimes, it’s just a matter of, ‘why do you keep doing that? I have tourette syndrome. Oh. Then that’s it,” Lubaroff said.
That’s the message Lubaroff, Kuntz, and others with Tourette’s are sending to families and individuals dealing with it: that talking about it is the best way to dispel the myths and misconceptions.
“Coming to things like this ... being around ‘my own kind,’ as I call it, it’s the best feeling in the world,” Kuntz said, smiling.
Making peace with or even embracing their tics is part of that.
“I really felt like I was born defective, but once I let go of the shame of it, it was so freeing,” Kuntz explained.
If you want to know more information about Tourette’s, you can visit the Tourette Syndrome Association’s website, www.ts-stories.org.