20-Year-Old with Tourette Syndrome Raising Awareness After Being Bullied: 'Might as Well Embrace It'
Aileen McCarron Baylen Dupree
Baylen Dupree was about 7 years old when her parents noticed she had very simple motor tics — an early sign of Tourette syndrome — but they brushed it off because it didn't interfere with her everyday life.
However, when she was 15, her tics worsened and caused her to struggle in school and at home. She spent the next few years searching for a neurologist who specializes in movement disorders, specifically Tourette's.
By 2020 — just before her 18th birthday and the nationwide lockdowns due to the COVID-19 pandemic — Dupree was officially diagnosed with Tourette syndrome. Now, Dupree is opening up to PEOPLE about her experience living with the disorder and why she's using her platform to raise awareness.
"It went from like 10 tics a day to 40 tics a day. And then COVID happened and it went from 40 tics a day to 500 tics a day. It was isolating, it was depressing," the New York native explains, sharing that everyday tasks became a struggle.
"Getting dressed, brushing my teeth, eating food, sitting down at the dinner table, I couldn't do it," Dupree, now 20, says. "From accidentally slapping my ex-boyfriend in the face to accidentally hitting my mom with a frying pan. It had been a whirlwind of emotions trying to accept it."
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Aileen McCarron Baylen Dupree
Tourette syndrome is a nuerodevelopmental disorder characterized by rapid, repetitive and involuntary muscle movements or sounds (tics), according to the Mayo Clinic. The tics typically begin to manifest between the ages of 2 and 15, and males are three to four times more likely to develop the disorder than females.
Tics can range from mild to severe and, in some cases, they can be debilitating and lead to self injuries, according to the Tourette Association of America. The frequency and severity of tics also change regularly, and can be in response to factors like stress, anxiety, excitement, fatigue, illness and more.
One out of every 160 children between the ages of 5-17 in the United States is diagnosed with Tourette syndrome.
Learning to live with Tourette's was a challenge at first for Dupree, who admits that she initially didn't have the best support system and felt alone while being home due to COVID. However, with the help of medications and a therapist, she eventually learned what triggers her tics — fatigue or the smell of lavender — and what minimizes them — exercise or listening to music with headphones on.
Dupree, who recently made the difficult decision to drop out of school at West Virginia University because of her struggles with the disorder, refuses to let her diagnosis defeat her. She says she's "fine where I am" and is focusing now on raising awareness on social media about the reality of living with Tourette's.
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She was inspired to go public with her struggle when she was one bullied about her tics while out shopping.
"I was followed around the store by these girls who were actually in my math class at the time and I was videotaped and made fun of because of my tics," Dupree recalls. "I've never seen the video but it was sent around and I got like 20 messages overnight through Snapchat basically like, 'Oh my God, what's wrong with you? Why are you acting like that?' "
At that point, Dupree said she became extremely depressed and struggled with her self-image, admitting that she couldn't even look at herself in the mirror because she hated how she looked when she tics.
Just days after the video was sent around, Dupree decided to make the best of the situation and share her experience living with Tourette's on TikTok for the first time, making her first video discussing the disorder in November 2021.
"It basically brought to everyone's attention that something was wrong with me so I flipped it. I was like, I never want to be that person anymore," she says. "I'm sick and tired of hiding from everyone when I can't do anything about the way I am. I can't change it so I might as well embrace it. And I've never looked back. I've never regretted it."
"There's not a person in this world that doesn't have something that they deal with," she continues. "I'm so fine living with this. I'm so happy. Tourette's doesn't define Baylen. Just because I struggle with it doesn't mean it defines who I am and who I will be."
Dupree now has 7.7 million followers on the social media platform, where she addresses everything from what Tourette's is to her capabilities to how the disorder presents differently in everyone.
"Tourette's is so misinterpreted," she says, referring to the criticism she often receives online. "The fact that people think I fake Tourette's or that I don't have Tourette's because I don't tic 24/7 or because their cousin's tics are different than mine says a lot."
"Would you say to someone who didn't have a seizure today or didn't have a seizure for three days that they don't have epilepsy? No, you'd be proud because they didn't have the seizure and be proud that they're having a good day. And it's the complete opposite for Tourette's. It's, 'Oh you're faking it.'"
Through her educational TikTok videos, Dupree tells PEOPLE that not only has she been able to debunk stereotypes about Tourette's but she's also been able to connect with others who have the disorder and make them — and herself — feel less alone.
"When you've kept yourself away for so long, knowing that there's people out there like you in society and that you're not alone, it's really amazing," she adds. "It's just so heartwarming."
