Prior to the rise of the influencer, one of the internet’s first creators was “The Tourettes Guy,” an online character whose crass outbursts and comedic skits went viral before “going viral” had reached the mainstream lexicon. Soon, teens and young adults would quote and mimic his outbursts, viewing his character and the disorder as a joke. The series, though, was based on inaccurate stereotypes, leaving “Tourettes Guy” (whose identity is purported, yet not confirmed to be someone named Daniel Hempstead) as one of the few forms of representation of the disorder seen online. Already exaggerated in film and TV, by reinforcing the syndrome as a swearing disorder, the internet quickly made Tourette syndrome meme-able, relegating it to a punchline and tool for laughs.Here we are, 20 years later, and Tourette syndrome has continued to dominate conversations online. If this year’s BAFTAs controversy and the rising number of creators with Tourette syndrome prove anything, it’s that while the representation on the internet has improved, its understanding continues to baffle the public both online and off. Since “Tourettes Guy,” reality TV, social media influencers and streamers have used the democratization of the internet to fight against the disorder’s stereotype and humanize the voices behind it. One of the most prominent is Baylen Dupree, an influencer whose popular videos about her tics and Tourette syndrome led to her own reality TV series with TLC on her life, Baylen Out Loud. Now entering its third season, the series captures the nuances of tic disorders and other mental and physical disabilities, offering a uniquely illuminating perspective.Still, the internet holds the most opportunity for representation. Anita Lynn Miller, known online as “Sweet Anita,” amassed millions of followers across multiple platforms since 2018. The U.K.-based streamer gained her following from her humorous content, openness and educational content on living with Tourette syndrome.She helps educate her viewers on the facts: First, Tourette syndrome is a neurological condition primarily linked to genetics. The condition is a type of tic disorder characterized by involuntary movements and sounds that emerge early in life. Like many other disabilities, Tourette syndrome and tic disorders sit along a spectrum of intensity.As seen by “The Tourettes Guy,” the internet focuses on the severe side of the spectrum, specifically coprolalia, a medical term when the tics are either inappropriate words or obscene gestures, despite it representing only 10% of those with Tourette syndrome, according to the Tourette Association of America. Miller has coprolalia, and while having thousands of hours of content, Miller’s most viral and discussed moments are when her tics were racist and anti-semitic. “Humans tend to sensationalize the most about things they don’t understand or things they don’t know. It’s so out of the norm, but yet, we’re fascinated,” says Bex Rose, a New York-based psychotherapist with Tourette syndrome who treats neurodivergent people.Rose explains that the sensationalization of Tourette syndrome online stems from “the human desire to categorize something as easily and fast as possible.” Social psychology dictates that, in so many ways, that’s why we have stereotypes, Rose adds:“That’s why we have boxes that we tend to put people in, instead of asking questions, humans are typically like cognitive misers, so the less work we have to do, the better.”This categorization leads to misconceptions, the most harmful of which is that most people with Tourette syndrome tic intentionally. Go to any online creator like Miller and their comments are filled with accusations of them lying about having it, doing it for attention or that they have control over their tics.To some, Tourette syndrome can appear as planned and intentional, which leads many to believe their tics are for attention or fake. But the reality is those with tic disorders want the opposite. “Actually, this person isn’t liking this attention. Even if it looks like they might gain something from it, they’re not liking it,” said Rose. “Unfortunately, humans on the internet are kind of cruel and will often be jealous of somebody getting away with something that’s maybe ‘socially unacceptable.’”These accusations aren’t uncommon nor are they confined to the fringes of the internet. ”Saturday Night Live” posted a skit this year mocking controversial celebrities who blame their outbursts or straight-up criminal behavior on the disorder. While some argue that it didn’t target people with Tourette syndrome directly, the daily criticisms people with the disorder face made the sketch feel less like parody and more like a reminder that people don’t think their disorder is real. In response to this sketch, Miller shared, “One of the worst things I’ve had to deal with as someone with Tourette’s is the endless suspicion that I’m faking it.” Tourette syndrome can be isolating enough on its own. When people are accused of faking it, it only results in them feeling more alone. The Tourette Association of America’s 2022 Impact Survey reports that 27% of adults with Tourette syndrome have attempted suicide at least once in the past 12 months, while 58% reported participating in self-harming behaviors.“They’re [people with tic disorders] already feeling shame about it, there’s so much shame that comes with it.” Rose explains, “You think I want to look stupid? You think I want to look like this? It’s not only fighting the judgment that you’re getting outwardly, you’re also fighting your inner judgment, because sometimes, especially in public places, you might be seen or looked to or deferred to in some way, you can feel discredited and shamed by your own inability to control it and that happens very frequently.”To avoid this shame, many of those with Tourette syndrome attempt to suppress their tics. However, suppression requires substantial effort and can lead to stress and fatigue. It’s also temporary. While some are able to, those with more severe tics cannot. “People tend to disguise their tics if they’ve realized they get negative reactions from people,” Rose explains. “I disguised my tics personally when I was younger as allergies a long time before I got them diagnosed, because it was easier to do that than to admit something felt wrong because it wasn’t represented anywhere positively.”Beyond disguising tics, the negative representation leads many to avoid diagnosis altogether. The 2022 impact survey reports that 50% of individuals are still undiagnosed. When Miller went to a doctor for a diagnosis as a child, she was told she was attention-seeking.Rose tells me that their mother accused them of faking the disorder as a child. They had to go through three different neuroscientists and endure many tests before receiving a formal diagnosis. Before being diagnosed, I had multiple neurologists claim it was “allergies,” “anxiety” or a “side effect of medication.” This, combined with the stigma and my own personal misunderstandings of the disorder, resulted in me not getting a diagnosis until I was 27.As people age, both diagnosis and living with the disorder can become more difficult. “I get really sad when I only see programs for children and young adults with Tourette syndrome and tics and nothing really for adults,” Rose says. “I’ve done group therapy for adults with Tourette’s and it was so healing for these people, because we are all in a group as adults, we have to pay bills, we have to go to work, we have to do all these things, and we still have this.” There’s no treatment or medication that just gets rid of it, they add. The older you get, the harder it can be because of added life stressors and more responsibility.As the internet continues to sensationalize and purposefully misconstrue the stories of those with tic disorders, one of the most meaningful things a person can do is stop to listen and learn from those with the disorder. “We are people underneath the tics and the Tourette’s. If you’re feeling like you don’t have a good reference for something, you can find it,” Rose sayd. “The other thing with the internet is you can find communities with it, but you have to be curious.”