Yuen: What's it like to live with Tourette's syndrome? A Minnesota cop explains on TikTok

Craig Elgin felt a verbal tic coming on — and didn't have a good feeling about it.

"I never know what I'm gonna say, or what my tics are gonna say, until they actually come out of my mouth," he says.

He was bracing for something terrible. Something obscene.

When the phrase finally arrived on his tongue, he blurted, "Throbbing picklejuice!"

"Yep, I don't know, either," he shrugs with a grin. "But I got a good laugh."

Little moments like these are the bread and butter of Elgin's social media posts — smatterings of everyday life that reveal the humor, heartbreak and humanity of living with Tourette syndrome. Under the handle @tourettescop, the 38-year-old Milaca, Minn., police officer has built a community on Facebook and TikTok (with more than 100,000 followers on each platform). His followers seek him out to find solidarity or better understand this often ridiculed neurological condition.

If Tourette's is discussed in casual conversation, usually it's the butt of a joke. Shouting out swearwords is actually a rare symptom of the disorder. More common examples are shoulder shrugs, hard blinking, grunting or clearing one's throat.

Elgin's tics are frequent and severe. Over the past year he's dealt with chronic neck pain because one of his tics sends him stretching his head backward, causing his muscles to pinch. A jaw-clenching tic makes chewing dreadful. An arm tic has him hyperextending his joints to the point that his elbows get sore. He repeatedly huffs, coughs and grimaces.

He details his struggles, along with treatments — from acupuncture and essential oils to Botox and chiropractor adjustments — while often punctuating each post with the phrase, "Happy ticcing!" He videos himself lapsing into his whistling tic, which is one of his favorites because, well, "it's fun, doesn't hurt and other people seem to like it."

"I don't like feeling miserable all the time. Some days it catches up with you," he conceded. "But I always try to stay positive. It just helps to keep me going."

He didn't think about becoming a viral personality until a friend suggested that he start a social media page. Elgin, who wasn't even on Facebook, was unsure about taking the plunge. "I can accept me, and dealing with it at work is not a problem, but showcasing it to the world for the internet to see?" he recalled. "I was scared."

But he thought about the awareness he could bring to the disorder. If he could educate people who've never met a person with Tourette's, show kids with the condition that they could thrive in the world, and give their parents hope — why not? He launched his social media presence in January 2019.

First signs

Tics develop in about one in five school-aged children — they show up on average around age 6. Some tics come and go, subsiding after the teen years, but others persist well throughout adulthood. Males are more than three times likelier than females to develop Tourette's.

Growing up in Mora, Minn., Elgin first realized he was different when he was in third grade. His class was visiting the school library, and a female classmate stared at him and asked, "Why do you blink so much?"

Back then, his tics were not as pronounced. When they first emerged, his parents knew exactly what they were because Tourette's and other tic disorders ran in the family. The movements didn't interfere with his schoolwork or quality of life, so he didn't see a doctor about it.

But after he graduated from high school in 2003, he decided to take up smoking, a habit he kept up for about 15 years. And then he decided to quit. He remembers taking his last piece of nicotine gum.

"And it was three days after that, the floodgates opened and my motor tics just were going crazy," he recalled. "It was such a surprise to me, like, what's going on? I haven't had these tics in years, and then I'm also having new tics. By the end of that first day, I was having to ice my elbows just because the constant movements were putting such a strain on my joints."

A doctor confirmed that the nicotine probably had suppressed his tics during all the years that he was smoking. When the tics exploded in his 30s, he had to relearn living with the onslaught of sudden, involuntary movements.

As a police officer, he works everything from traffic stops to welfare checks. Strangers ask him: What's that noise? Or: Do you have the hiccups? The most blunt: What's wrong with you?

"If they ask, I'm not gonna ignore them, I'm not gonna be embarrassed. I don't get angry. I just let them know, 'Yep, I have Tourette syndrome, this is my normal,' and I move on," he said.

Sometimes in Milaca, a town of less than 2,900 people, Elgin needs no introductions. Like when he crouched down to give a good petting to a woman's German shepherd while waiting for an ambulance. Elgin started to divulge that he had a dog, too, when the woman cut him off: "I know. I follow you on Facebook."

The biggest criticisms he's faced on social media come from people who question whether someone with Tourette's should be able to carry and shoot a gun. Elgin says his tics stop while operating a firearm. He has no doubt he can safely fire one, because the act requires him to intensely focus. He says the tics re-emerge after he puts the weapon away.

Hope for relief

Elgin shared his experiences with Tourette's to the nation last week when David Begnaud, lead national correspondent for "CBS Mornings," profiled him as well as fellow Minnesotan and KSTP reporter Kelsey Christensen, for an eye-opening feature on people who have the syndrome. Begnaud, who has the disorder himself, connected Elgin with Dr. Joohi Jimenez-Shahed in New York, a neurologist who specializes in treating people with Tourette's.

Elgin felt a sense of relief after the first visit to her office. He says much of the medical system he had encountered until that point — from general practitioners to pain management to ER — didn't know what to do with him. Jimenez-Shahed placed him on a new drug, fluphenazine, which helped decrease his tics. Elgin says he soon hopes to discuss whether he'd be a solid candidate for deep brain stimulation surgery that might bring him additional relief.

As he gets older, he says, he needs a break from the pain and sleepless nights.

Despite it all, Elgin wants people, especially kids with Tourette's, to know they aren't alone, and to keep dreaming big. "Everything's gonna be all right," he said. "Just because you make extra noises and move around doesn't mean you can't experience what life has to offer."

For Elgin, that life means singing in the car, working out, ice fishing and being a cop.

His tics are a part of him. But they do not define him.

"They just do their thing, and I do my thing," he says, "and we just exist."