From stigma to success: job hunting with Tourette Syndrome

Finding a job is no easy feat, but for people with Tourette Syndrome, the challenge can be even more daunting. According to Carly, the content creator behind the YouTube channel and TikTok account Ticcing Together, Tourette Syndrome has an unfair stigma in the public eye that can cause negative repercussions on the job hunt. In TV and movies, people with the ticcing disorder are often used as a punch line or distraction, but the reality is, these people have dreams and aspirations just like the next. No disorder should stop them from finding a job they love.

In a world where stigma and discrimination persist, Carly shares her experiences and advice for navigating the job market with this neurological disorder. From managing tics during interviews to finding the right work environment, Carly’s insights offer hope and inspiration for others with Tourette’s, as well as valuable guidance for hiring managers and what they can do to make their processes more accommodating to people with Tourette’s.

Going head to head with stigma

As Carly says on her YouTube channel, her content aims to provide education about and raise awareness as to what it’s like living with Tourette Syndrome (TS). But offline, it can be more onerous to lead with education. She’s typically “scared of telling people in [job] interviews just because of the stigma that persists about Tourette’s.” The perception the public has of TS from its depiction in the entertainment industry is that people with the disorder “swear all the time or they’re belligerent and nervous-chaotic,” Carly explains. “What kind of employer—if that was true—would want to hire that?”

Even though discrimination based on disability status is prohibited in the US by the Americans with Disabilities Act—and by the Employment Equity Act in Carly’s native Canada—bias persists. As recently as 2019, the US’s Equal Employment Opportunity Commission sued a convenience store in Missouri for refusing to hire an applicant with Tourette Syndrome.

Tourette’s, in brief

Tourette Syndrome is a neurological disorder characterized by uncontrollable vocal and/or motor tics. People with the disorder are typically diagnosed as children or teenagers, and their tics can and do change over time, although the types and severity of tics vary from person to person. The most infamous of tics—coprolalia, or involuntary swearing—only occurs in about 10% of cases. More common are physical tics like blinking or grimacing, and vocal tics like grunting or repeating a word or phrase.

According to the CDC, about 1.4 million Americans have persistent tic disorders, including TS, and approximately 1 in 162 children in the US have Tourette Syndrome. People affected by TS can be more likely to develop ADHD, anxiety, behavioral problems, and learning disabilities. As for tics, in some cases, children can “grow out of them”, with one report showing almost half of the studied group were tic-free by the time they turned 18. For those who don’t outgrow the symptoms, things can get pretty tough—especially when it comes to joining the work market.

Eyes on the vibes

For Carly, the decision to disclose her Tourette Syndrome or not in a professional setting depends mostly on whether she feels her colleague or manager will handle the information kindly. Sometimes, if she doesn’t feel as though that will be the case, she’ll suppress or redirect her tics, temporarily holding in her largest movements and loudest sounds until she can express them safely.

According to Carly, suppressing tics causes a “burning, bubbling, fiery discomfort” in the body—not exactly a sustainable practice! However, when people lead with curiosity or a genuine desire to provide accommodations that will help her do the job, Carly says she feels much more comfortable disclosing her diagnosis.

Interview prep

One of the biggest triggers for Tourette’s symptoms is stress. “So, unless you’re some magic person that can’t be stressed during an interview, I think you’re going to have more tics,” predicts Carly. While stress before a job interview is normal, this stress could be amplified for TS sufferers as they navigate both the anticipation of impressing a recruiter and the possibility of ticcing throughout the interview.

To combat this, Carly advises that people with Tourette’s go into interviews with mindfulness at the forefront: “Breathing techniques have really helped, and trying to stay grounded.”Rehearsing answers and preparing as much as possible can also help you feel less overwhelmed before the big day. If you feel comfortable enough to tell the interviewer about your tics beforehand, this could also help reduce stress.

Not all jobs are created equal

Even though Carly works customer-facing in a bookstore, she believes that “retail is not the best place for people with Tourette’s because you’re always in the public eye,” and thus vulnerable to questions or judgment from customers. Although she’s been lucky with an understanding manager and customers who don’t give her many problems. The early Covid lockdowns ironically provided Carly with a better working experience. Her job went hybrid, and she was able to spend some time working from home, which she loved.

For others with Tourette’s, Carly imagines that a remote job might be a great match. At home, “you’re able to focus and redirect and have tics in a moment where you’re kind of safe and feel like you’re not being watched,” rather than in the public eye on a retail floor. Before applying, you should research the company in-depth to learn more about its culture, values, and diversity initiatives to gauge if the environment would suit you.

Lastly, inclusive hiring processes are paramount. If you notice any red flags in the application phase, maybe it’s not the right place for you. Better to find out early on that a role isn’t a good fit so as not to put your time and energy in the wrong places.

Don’t limit yourself

Although many people with a Tourette Syndrome diagnosis are worried about job prospects, Carly says, “there’s no limit to what you can do with Tourette’s.” According to the Tourette Association of America, “People with TS have been highly successful in many lines of work, from driving a bus to making feature films to teaching.”

Carly cited the example of Brad Cohen, an award-winning educator and public speaker whose tics didn’t hold him back from a successful career as a teacher and advocate. She also notes that the only thing really holding people with Tourette Syndrome back is the way the world pre-judges their tics: “If [people] didn’t think this way about this disorder, we could have way more opportunities.”

Advice to employers

As for Carly’s advice to employers? “Have an open mind and don’t listen to the stigma.” If a hiring manager knows they have a prospective employee with Tourette’s coming in for an interview, they should educate themselves on the disorder, both to make sure they’re asking the right questions about accommodations and to make sure they’re creating a welcoming (and legally compliant) space for a potential employee. “You never know,” says Carly. “Your employee with Tourette’s could be the next employee of the month!”

Photo: Jake Carty for Welcome to the Jungle

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