Living with Tourette syndrome: Cop, reporter and accountant open up with stories of struggle
This is a story about living with Tourette syndrome. I myself have Tourette's, and wanted to raise awareness about the disorder.
So, I want you to meet three people like me: Craig, a cop, Kelsey, a local TV reporter and Alex, a CPA. In the process of telling their stories, you'll hear some of my own.
An estimated 350,000-450,000 children and adults in the United States are living with Tourette syndrome. The neurological disorder causes tics that can range from repetitive eye blinking to uncontrollable vocal — and physical — outbursts.
But many cases go undiagnosed, and there are many misconceptions about the disorder.
"Things like, 'Why can't you hold it in?' … So it must be something that you're doing on purpose," Dr. Joohi Jimenez-Shahed, a neurologist in New York City, said.
Also: "The misperception that it's all about swearing and, you know, doing inappropriate behaviors, which may affect some individuals with tics and Tourette's, but not everybody," she said.
Among those who have the condition, there are varying stories of struggle.
Meet Alex Brown. For years, Tourette syndrome took over his life. He had a severe case called coprolalia.
He told me he couldn't go to school and for five or six years, his family "didn't do anything" because of the disorder.
"We didn't go out to eat. Didn't go to church," he said. "We were homebound. We were completely shut off."
His tics included "anything you can think of" – ranging from opening car doors to touching the stovetop when someone would cook at his house.
"I would walk by and just touch the hot stove," Brown said. "I would scream really, really loud to the point where now I can't, I can't sing, because my vocal cords have been stretched so much."
His symptoms were extreme enough for him to undergo deep brain stimulation when he was 16. With the treatment, wires go into the deep brain structures that are involved in the circuitry that produce the tics, to try to bring some relief. The procedure is often used in Parkinson's patients, but is increasingly successful in controlling severe Tourette's.
Brown called the procedure "liberating and magical," and he was eventually able to pass his CPA exam and live a normal life.
"I'm working a job," he said. "I can do whatever I want, that any other person can do."
Police officer Craig Elgin, who is 37, told me he wants to undergo the treatment. I introduced him to Dr. Jimenez-Shahed, and in the coming weeks, they will be meeting in New York City to discuss deep brain stimulation as a real option.
For now, Dr. Jimenez-Shahed put Elgin on medication – the first time in his life he's been on medication for Tourette's.
But like all medications, there can be side effects. Elgin recently checked himself into a hospital after prescription side effects caused him restlessness and nightmares. But his medication has since been dialed back, and he has improved.
He told me his Tourette's doesn't inhibit him, although at times he does get "a little self-conscious about it." Even with persistent symptoms, he functions pretty normally, serving his community as a police officer with the Milaca, Minnesota police department.
"It's like, yeah, you know, it's completely okay to have Tourette's syndrome and you can still be normal and make noises," Elgin said.
He said social media, where he's able to open up about his condition, is his "therapy." He's known on Instagram as the Tourette's Cop, and has brought together more than 150,000 people.
That's how I met him. I was diagnosed when I was six years old and have a nose tic, a tongue tic, and a neck tic – often induced by stress. In the last couple of years, I've gotten more tics. My eyes dart all the time, which for me, can be humiliating.
The thing is: Tics can't be controlled. Asking someone to control their tics is like asking them not to sneeze – or blink. At some point, you just erupt.
The exact cause of Tourette syndrome isn't known.
"We know that there's probably a strong genetic component," said Dr. Jimenez-Shahed. There is new research coming related to environmental exposures, she said.
"So, things maybe that happened with the individual's mother perhaps during pregnancy," she said. "Other … psychosocial features that might influence the manifestation."
"So it's a very complex disorder in that sense," she added.
Many cases are mild.
Reporter Kelsey Christensen, for example, has been able to control her Tourette's enough to appear successfully on television – without looking like she has Tourette's. Off camera, she can be seen continuously blinking her eyes.
She was only recently diagnosed, after hearing my own story. And the Emmy Award-winning reporter for KSTP-TV called the diagnosis "clarifying and comforting because I know why I'm doing what I'm doing."
She doesn't think her condition is a big deal. Neither do I.
The media has helped. Tourette's has long been an easy target, disrespected in popular culture. But in recent years, the media has created conversations that have raised awareness about the disorder.
In a recent interview with David Letterman, singer Billie Eilish experienced a tic on camera.
"If you film me for long enough, you're gonna see lots of tics," she said.
But Eilish has thrived even with the condition.
And so have I.
If you have Tourette's, so can you.
