Baylen Dupree Is Taking Back Her Story: ‘I Am Not Tourette’

With almost 10 million followers, TikTok creator and influencer Baylen Dupree has made a name for herself in the social media space, specifically for humanizing Tourette syndrome. In addition to documenting her journey on TikTok, she also stars in the TLC series, Baylen Out Loud. 

Now 22 and newly engaged, Dupree was first diagnosed with Tourette’s syndrome at 18 years old. While the limelight comes with its fair share of pressures, Dupree is getting better at feeling comfortable in her own skin: “I’m excited and nervous. I’m just ready for people to understand me and, hopefully, I can go into a grocery store one day and not feel uncomfortable for one day in my life.”

Dupree sat down with Not Skinny But Not Fat host and self-proclaimed celebrity anthropologist, Amanda Hirsch, to discuss her journey with Tourette’s syndrome, finding balance, and the times where she doesn’t tic—when she’s sick, sad, and during intimacy. She even gets real about the criticism and disbelief she faces online.  

Life With Tourette Syndrome

Dupree explains, for a Tourette syndrome diagnosis, you have to have both motor tics (repeated movements) and vocal tics (rapid, repeated vocal sounds) for more than a year. She started having motor tics around the age of 6 or 7, but without context, she assumed “everyone else did the same things.” The tics resurfaced when she was 15 or 16, a few months before the pandemic hit. Initially, they were not extremely noticeable, things like a throat clearing tic or neck twitches. 

“I can’t control it. I just have to do it, and people didn’t know what I was talking about,” she adds.

But the isolation of the pandemic marked a turning point. “My parents started noticing it more because I was home more. I can barely get myself dressed in the morning. It went from, like, two to like 12 tics a day. I was getting fed by my parents, and I couldn’t stand up. I was throwing myself on the floor.”

Taking Control of Her Narrative

Today, Dupree can look at herself in the mirror, have a tic, and still think she is a beautiful person. But for many years, she chose to hide her Tourette syndrome: “I had no confidence in myself. I was in therapy multiple times a week.” 

She first decided to share her journey online out of a desire to be honest and vulnerable. “It initially stemmed from me being hidden. I was just bullied. There was a video where I was being recorded, and it was sent around by somebody at my school. I didn’t want her making fun of me. I just didn’t really want my story to be told from someone else’s mouth or someone else’s perspective.”

It was that moment that she decided not to be ashamed of who she was: “I just kind of say it out loud, like, ‘I have Tourette syndrome,’ and just take my power back.”

Dupree says she believes her parents are proud of her for using her platform to educate people. She also takes comfort in creating community bringing awareness for people with Tourette’s syndrome, specifically those who might feel alone: “A lot of people’s stories are the same. They often stem from doctors who don’t know. Doctors diagnosing people at 25 who’ve gone their whole lives, but the doctors just didn’t know.” 

How to Approach Someone With Tourette Syndrome

When people approach Dupree and they call her by her tics instead of her name, it sets off all of her tics. “That’s a horrible way to approach me because it’s making my condition worse, and a lot of people don’t know that.”

Dupree know how to laugh at herself. It just depends on how people approach her. While people should avoid approaching her and leading with mentioning her tics, Dupree doesn’t mind laughing and joking with people at times. 

She explains that it requires emotional intelligence and the humility to learn and grow in the process. “My parents had to learn when is it okay to laugh and when is it not okay. It’s like a ‘learning how to read the room’ type of thing, and learning when the right moment is based on how I react to it.”

Telling Her Story on TV and Online

Dupree says that it’s “insane” to think about having her own show. “I’m very blessed to have this and have the opportunity to help other people and to just share my life.”

She emphasizes that while the TV show shares her experience with Tourette’s, it’s not one-size-fits-all. Everyone’s experience with Tourette’s is unique. 

Dupree wants viewers to know that her illness does not define her. “This is my life with Tourette. I’m not Tourette. I’m not the face of Tourette. I’m not the voice of Tourette. I’m just telling my story and my journey.”

While she receives a lot of praise, she also gets her fair share of criticism online. “Sometimes, it is hard to not see it and not go down the rabbit holes, but I’ve done the best that I can. It was really hard in the beginning, but it’s gotten better.”

Listen to the rest of this week’s episode of Not Skinny But Not Fat to hear more about Dupree and her show Baylen Out Loud.