- People living with Tourette syndrome, a neurological disorder involving uncontrollable repetitive movements or sounds known as tics, are turning to social media to educate their followers on the widely-misunderstood condition.
- Instagram personality Tourette's Cop and TikToker Emily Roach are using their platforms to educate followers about the realities of living with Tourette syndrome.
- Opening up about a neurological condition puts creators in a vulnerable position. Roach even deleted some of her videos in the wake of hateful comments.
- Visit Insider's homepage for more stories.
Social media creators are harnessing the power of YouTube, Instagram, Twitch, and TikTok to open up conversations about discrimination, stigma, and the realities of living life outside of the norm. One community is increasingly taking advantage of the chance to educate a worldwide audience: people living with Tourette syndrome.
Tourette syndrome — also known as Tourette's — is a neurological disorder that manifests in uncontrollable repetitive movements or sounds known as "tics." It's estimated to affect 1 to 10 in 1,000 children, according to the National Institutes of Health.
Social media has proven to be an effective platform for Craig, a police officer in Minnesota who has Tourette syndrome (he's chosen to withhold his last name from the public to protect his privacy). Tourette's Cop, as Craig likes to be called online, has racked up 28,000 followers on Instagram and 27,000 on Facebook by sharing the details of life as a law enforcement officer with a neurological condition, "one tic tic ticket at a time," according to his Instagram bio.
He frequently posts photos and videos of himself on the job, sometimes documenting his motor and verbal tics that manifest in a variety of ways, from twitches to clearing his throat. He also films YouTube videos answering followers' general questions about Tourette Syndrome.
Craig says he's had Tourette Syndrome for as long as he can remember. The condition runs in his family, and he grew up with uncles and cousins who also exhibited tics — but he never fully understood the disorder.
"I could say that I had Tourette Syndrome, but I didn't know the full meaning behind it," he told Insider.
Putting a face on the widely-misunderstood condition and educating the public about its complexities was one of Craig's initial goals when starting the Instagram account. The other, he says, was to remind people who live with Tourette's that a diagnosis doesn't have to limit their possibilities.
"I want to show people with Tourette Syndrome – children, adults, maybe even parents of kids with Tourette's — that you can lead a normal life and do what you wanna do, regardless of your diagnosis," he said. "Having Tourette syndrome isn't a life ruiner."
The response to the account has been largely positive. Craig's posts receive thousands of likes and hundreds of comments thanking him for bringing awareness to the condition.
"Relatable! Thanks for putting Tourette's in the spotlight," one commenter wrote on a video featuring Craig "getting the tics out" before starting work.
"Thank you for sharing this," another wrote. "My son is 6 and has Tourette's he's extremely intelligent and hilarious and caring and I feel like people don't get to see that sometimes because they're distracted by his tics. I showed him this video and he was excited to find out there are other people just like him."
Craig says he's "absolutely blown away" by the response to his online presence.
"Just reading the messages from people who see my page or read one of my posts and are inspired to do something or to step out of their comfort zone," he said. "It's been incredible."
While positive feedback is the norm, Craig still deals with negative comments and is tasked with educating his critics.
One commenter, he recalls, wrote that he was simply "a lawsuit waiting to happen" and that his motor tics would cause him to shoot an innocent bystander. He responded by referring the commenter to a video explaining how motor tics rarely manifested on the job, as intense focus can suppress tics.
"I try to educate them as much as I can. If what [they're] commenting on is something I've made a video or post about, I'll tell them to go take a look at that and see if they have any more questions," Craig said. "But some people instead will choose to remain ignorant and verbally attack me with their preconceived notions of Tourette Syndrome."
Craig isn't alone in experiencing negative comments about his condition. Twitch streamer and YouTuber Sweet Anita — who has coprolalia, one manifestation of Tourette syndrome involving repetitive and involuntary use of obscene language or gestures — received backlash online in 2019 for experiencing tics during a live stream that took the form of antisemitic and racist phrases.
Viewers immediately took to Twitter calling for her to be banned from the platform, including Twitch partner lilchiipmunk who posted in a since-deleted tweet: "How's this allowed? I don't care if she has Tourette's she must have some way to mute herself?"
The blowback online, Sweet Anita revealed in a tweet, was likely to trigger the condition — meaning, she might repeat the tic.
"I'm trying my best in this situation but honestly it's likely to happen again," she wrote. "The more people pressure me not to say it, the more my condition latches on to the phrase. It never used to be a tic before twitch, but chat has been intentionally triggering it."
Educating the internet can be emotionally draining and frustrating, as one TikTok user discovered.
16-year-old Emily Roach has racked up 130,000 followers (and over 3 million likes) on TikTok from posting videos addressing the realities of Tourette Syndrome.
Some of her posts are tongue-in-cheek videos calling out widespread ignorance about the condition, while others answer frequently asked questions and showcase the different ways her tics manifest, from physical twitches to saying celebrities' names.
🏃♂️ i rlly do b running from ppl who tell me to stop my tics ##tourettes ##tourette everyone at the meetup was super nice about it tho
FAQ about tics! ⚠️ TIC WARNING ⚠️ ##tourettes ##tourette ##tourettessyndrome ##tic ##tics
Starting a public conversation about Tourette Syndrome was never part of Roach's plan when she downloaded the app.
"When I initially got TikTok, I had no plans to talk about it. I was too scared to talk about it with anyone," she told Insider. "I was really hesitant to do it for months. I would have so many ideas and I would even film videos, but I wouldn't post them."
Roach, who was diagnosed with Tourette syndrome in November, began showing symptoms of the disorder at age 14, and her verbal tics evolved from grunts to saying full words or phrases. Her first tic, she says, was repeating the name of the car her family was renting at the time, "Chevy Trax."
Before seeing a neurologist, Roach was familiar with tics and guessed what her diagnosis might be — thanks, in part, to social media.
"I have a friend with Tourette's who has a YouTube channel, so she kind of made me realize that what I was experiencing was tics. I'd been experiencing them for a few months and I didn't know what it was at first," the 16-year-old explained. That friend, who goes by Claire Sophia on YouTube and Instagram, has cultivated her own 125,000-subscriber following by sharing the day-to-day of life with Tourette Syndrome.
Roach's biggest concern about posting her videos was contending with skepticism and disbelief from followers. Her tics, she explained, are suppressed during times of intense focus — when she works a shift at Taco Bell, for example — so many people don't know that she has Tourette's.
"I thought that people would accuse me of faking it because I don't tic a ton at work," she said, "so it was scary to start posting."
Her fears were not unfounded. Soon after posting the TikToks revealing her tics, Roach deleted some of the videos due to comments accusing her of "faking" having the condition. During a live stream, she says, many of the comments posted were questioning the reality of her diagnosis, as she didn't tic in all her videos.
The skepticism and ignorance, she says, is frustrating. "People assume they know everything about Tourette's without doing any research," she said.
Despite the pain of the negative comments, Roach has since reposted her videos in the hopes of inspiring others.
As she captioned one clip, "I was going to stop doing videos like this but it's been helping a lot of people with similar issues."
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