Life with Tourette’s Leads to Advocacy

YOUNGSTOWN, Ohio – Life with Tourette Syndrome hasn’t always been easy, but Brittney Wolf has used the challenges she’s overcome to teach others and, hopefully, alleviate some of those struggles for the next generation.

“It’s made me a stronger person and a more diligent person because I didn’t let this thing turn my life completely upside down in the worst of ways. It turned into the best of ways. I never wanted it to be an awful thing that I struggled with,” she says. “I did struggle, don’t get me wrong, but it’s helped me see the positives of who I am and all the people I’ve been able to help and teach.”

Wolf was diagnosed with Tourette Syndrome when she was 7 after her mom realized she was “moving a lot more than a typical child and it wasn’t just moving around like a little kid would with not being able to sit still.” 

After her diagnosis – it was a year-long process, mainly watching for and recording tics, since there’s no medical test for Tourette’s – it was her family, Wolf says, that set her on the path to normalizing the neurological disorder. Her mother would pre-screen TV shows and movies to see if there were negative depictions of Tourette’s “because she didn’t want me to absorb the message of what I couldn’t be,” Wolf says. 

“She told everyone to go on as normal, because if no one acted like it was a big deal, I wouldn’t think it’s a big deal,” she continues. “I’m so thankful for that. She was passionate about making me understand that I was a normal kid who just moved a bit more.”

Tourette Syndrome is a neurological disorder in which someone has physical and vocal tics. The cause of the disorder isn’t known, but researchers have found it likely stems from miscommunications between neural pathways in the brain. While there’s generally no pattern to tics, they can be exacerbated by feelings of stress, anxiety and fatigue. And even though the vocal tics are what’s most present in pop culture understandings of the condition, only about 10% of people with Tourette Syndrome regularly show vocal tics.

“It can be swearing. It can be saying random words that seem out of place. It can seem almost forced. I can see that chair and if I have vocal tics, that could trigger me to say, ‘chair.’ I can see how people couldn’t fathom that being real,” Wolf says. 

For Wolf, however, most of her tics are physical. During her interview with The Business Journal, her mouth occasionally twitched and she stretched her neck. While people can sometimes suppress the urge to tic, she explained that afterward, she’d likely have a few vocal tics in the car on her drive home “because I know I’m in a space where no one can hear me.

“Every single person with Tourette is different with their tics and that’s what can make it difficult to be an employee or be a student,” she says. “Even I don’t know why my body does this and that can be a very uncomfortable feeling.”

For the 20-plus years since her diagnosis, Wolf has worked to break the stereotypes and misconceptions around Tourette’s. She’s spoken to medical students at Northeast Ohio Medical University and to educators across the country as part of the Teach Better Speakers Network. She’s in the process of writing a book – due to be released early next year – about living with the condition. And on Sept. 29, she’ll be the featured speaker at Youngstown Score’s Women in Entrepreneurship series.

“I want people to understand that we’re not the joke that people often see. We’re hirable. We’re not just the bad students in class,” Wolf explains. “We want to learn and work and just because I have Tourette Syndrome doesn’t mean I can’t learn or work. If you hire someone with a disability, in my opinion, they’re going to be the hardest worker because we’ve all had to fight so much to prove that we’re more than the stigma that’s attached to us.”

Bringing people like Wolf to Score to share their experiences, said chapter President Ron Emery, is part of an effort to get business leaders thinking about inclusivity and how they can make their workplaces more open to all. At first glance, a disorder like Tourette’s may not be immediately visible, but that doesn’t diminish its effect on people living with it, he says.

“It helps us, when we talk to people like Brittney, understand how significant of a contribution can be made by someone dealing with their own handicap. They can be dedicated and important to the team,” he says. “So many people have a disability, even if it’s not visible. Some are more debilitating than others, but they’re all issues that we have to deal with. When you manage people, you have to have the compassion and understanding of who they are. Different people make up this world and that diversity makes us rich.”

Wolf works as an order fulfillment specialist for Nestle, a full-time job alongside her public speaking and fundraising engagements. She’s also part of the disability pillar in the company’s employee resource group, a role where she speaks to other employees about her condition and how they can be more inclusive in the workplace. Her largest presentation so far was earlier this year to about 80 people. While that number may not be all that big in the grand scheme of Nestle’s operations, she’s proud of the impact that can ripple out from that one presentation.

“That’s 80 people who know more and can talk to other people about it. That’s 80 people who understand that it’s not a big deal to hire someone with Tourette Syndrome,” she says. 

In the workplace, it can be OK to ask someone about their disability, Wolf advises, but if they decline, don’t push the subject. If the person doesn’t want to discuss it, though, going out of your way to learn about their condition on your own and working to make the workplace more accommodating can be a major step, both for the individual and the company as a whole.

The biggest “don’t” that Wolf offers for working with someone who has Tourette’s is to ask them to stop ticking. In her own case, someone asking her to control her tics makes her anxious, which in turn can exacerbate them. If it gets bad enough, people with Tourette Syndrome can have a “tic attack,” which Wolf describes as similar to a panic attack with full-body tics.

“People do it. People ask. People have asked half-jokingly, but it’s not a joke to me. I wish I could,” she says. “For 20-plus years, I’ve wished I could. Doing that can only make them tic more. If I feel uncomfortable, I’ll tic like crazy.”

She also says one of the biggest helps is to let people with a disability – regardless of what it is – take the time to take care of themselves. In her case, it may just be five minutes of breathing exercises to get her tics to wane.

“The person with a disability knows what they need to do to be their best. If you don’t let that happen, that makes it worse,” she says. “Admitting that I have a disability hasn’t always come easy for me. There was a time when I didn’t even want that word to be said, even I was being open and honest about it. I’ve realized that it’s not a bad word, that it is what it is. If I need accommodations, I have to be able to tell them I have a disability and what I need.”

Wolf’s book, “Ticking My Way through Life,” will be released early in 2022. Much of the book focuses on what it’s been like living with Tourette Syndrome, but it also includes sections that invites readers to reflect on their own experiences.

“I ask [employers] to think about what they’re doing for people with disabilities, if they have preconceived ideas about someone with a disability, how they can be a better ally. There’s a similar section for teachers and other support systems,” she says. “With this, I want to make another little girl with Tourette Syndrome feel not so alone like I did sometimes.”

Pictured: Britney Wolf will speak in Youngstown Score’s Women in Entrepreneurship series on Sept. 29 about living with Tourette Syndrome.