What It’s Like to Have Tourette’s in a PC World

On a seemingly ordinary evening in early December, renowned streamer Sweet Anita — who has more than 650,000 followers on Twitch and 400,000 subscribers on YouTube — was live-streaming when she blurted out a bombshell: “Kill all Jews.”

The internet almost immediately exploded with rage, with people calling for her to be banned from the platform and, for all intents and purposes, cancelled altogether. Anita, however, had absolutely no control over the words that departed her mouth on that evening: Not only does she have Tourette’s Syndrome, she’s one of only 10 percent of people with Tourette’s who suffer specifically from coprolalia — that is, uncontrollable swearing — and what she said was a tic.

“Imagine your mind betrays you each day by revealing uncontrollable thoughts, facilitating distracting physical movements and inappropriate sounds to an audience you do not want,” says Amanda Talty, the president and CEO of Tourette Association of America. “For those living with Tourette Syndrome, that is reality. The complexities of this disorder can be difficult to understand. Innate in the condition is the inability to restrain oneself, which can cause unintentional departure from social conventions. It’s important to know that these behaviors aren’t willful.”

This is daily life for Anita, who constantly finds herself explaining her syndrome and her inability, at times, to control what she says — and even defending her career as a streamer — to thousands and thousands of onlookers. 

To learn more about Tourette’s and the difficulties that people with this oft-embarrassing, debilitating syndrome face — particularly in the hypersensitive world of streaming and social media — Anita and I hopped on Discord so she could break it all down. Her comments have been left unedited, and for clarity, instances of verbal tics have been left intact, but placed in square brackets [like this].

Growing up With Tourette’s

I first started getting tics when I was really young. So, I asked my mom about it, and she said that my first word was “Michael Shoe-Smacker.” And, um, early in the streams, people were like, “What was your first tic?” And I was like, “Michael Shoe-Smacker.” I just didn’t know when that started, and I assumed it must have been when I was like three or four, but it turns out, it was much earlier than that. It was actually before I said “mamma” or “dadda” — I said “Michael Shoe-Smacker,” which is insane. And I just wouldn’t stop and drove everyone mental with it. But people assumed that I was just a kid being silly, and no one really noticed that there was something off about me until I was like 13 or 14, when people thought that I would be more able to sit still and behave and not be so strange, and it didn’t stop.

So, I noticed it then, when I was trying to go to school for the first time. I only did a year of formal education, and I couldn’t sit still, and I kept coming out with inappropriate things, and I kept hitting people, I kept pinching people, I got kicked off buses, and y’know, all this sort of stuff. I was just, like, really struggling, so I ended up kind of retracting into myself and staying at home, and I ended up not doing very much formal education as a result.

I tried to get a diagnosis and couldn’t. I went to the doctor alone, because my mom was ill and I was her caregiver, and they just didn’t take it seriously. The doctor was like, “Do you think you have magical powers? Do you see things that aren’t there?” and all these sorts of questions — y’know, schizophrenia-type questions. When I said no [I fucked and he fucked], he basically just said, “Well, you’ll probably grow out of it. You’re probably attention-seeking.” Which made me withdraw even more, because I thought, if this happens in front of people, they’ll think I’m attention-seeking, and I felt really ashamed.

So, yeah, I didn’t get very much understanding, and I tried several times in my teens to get some sort of help or understanding or context, and it wasn’t until my early 20s that I said, “I do this when I’m alone. It’s not attention-seeking. I really do need to get to the bottom of this.” We finally did some tests, and they didn’t tell me the results of them for years. So, I chased it up a few years later, and was like, “Are we going to continue with this? Is there going to be any answers?” And they were like, “Oh yeah, we already diagnosed you, and you have Tourette’s Syndrome.” 

Basically, my doctors knew for several years longer than I did. I found out when I was like 26 or 27 that it was Tourette’s Syndrome.

Dealing With the Internet and Its Critiques 

I expected a lot more negativity than I received when I first joined Twitch. So I’ve got to just outline that, even though I do get some harassment and some negativity, it’s been mostly really positive.

But sometimes people do take my tics out of context, and they post them in places where nobody’s heard of me on certain websites and things, and they don’t give any explanation. Or, for instance, the Jerusalem Post covered my, um, I had a tic where I said, “Kill all Jews.” I didn’t mean it, and it wasn’t what I was thinking — it was just a tic. But they took it out of context, and then they didn’t really explain that I had my condition until quite late in the article. And even then, they only said, “It may be because of my condition.” 

That kind of wording puts me in danger. It makes people think that I’m, like, going out there and trying to encourage people to feel really aggressive toward certain groups of people. I think, while some people use it to sensationalize the situation and get views and clicks, ultimately, they’re putting me at risk of attacks in public. And, y’know, people try to dox me, people harass me on stream, people intentionally trigger my tics in order to put me in pain, and things like that, as a result of believing this idea of me that people want to paint.

It’s tough, especially on the internet right now, to put yourself out there with a disability — especially on Twitch, because there have been streamers in the past who have faked disabilities in order to garner sympathy, money and fame. As a result, most of the people that I’ve seen with my condition have received a considerable amount of doubt, including myself. But I’m staying out there, and I’m trying to encourage people to, as a general policy, be kind to everyone until they’ve been given a reason not to, rather than come at it from a [wow, dick] from a [fuck] from a perspective that you should, um, be suspicious of everybody and be a dick to anyone and just generally be mean to all disabled people, just in case any single one of them is deceiving you. 

It’s better to be kind to people and possibly be duped one day by one person than it is to be a terrible person and be awful to everyone around you in case you’re accidentally kind to somebody who didn’t need as much help as it seemed. I think that philosophy of encouraging people to be gentler and less suspicious is a big part of the thing that keeps me streaming, and the kind of attitude I want to promote, not just toward people like me, but toward anyone.

I find it a bit ridiculous that people would accuse me of faking this or that people refuse to understand it, because it literally puts me in danger. People will send me death threats and try to get me cancelled from things; they’ll constantly harass me and try to find where I live and try to dox me all the time. And, y’know, we get raids of bots who send trigger words, literally just to make me bleed or to make me, um, y’know, tic in a way that harms me. Y’know, there’s a lot of anger, and at the same time, a lot of people accuse me of faking my Tourette’s for the stream. And it’s like, if you look at everything, all of the hate and doubt I receive, it’s not actually beneficial at all.

But there’s always going to be people who waste time on hate, and no matter what I do in life, I’m going to end up with people who don’t understand me. When I get on the train, I have to explain myself, whenever I get in a taxi, whenever I go to the gym — anything like that. So, at least here, on this platform, I get to do that in a way that helps people and changes thousands of minds. Rather than, y’know, it just being one person at a time at the gym, it’s actually a whole bunch of people.

I have a lot of people with Tourette’s Syndrome in my community as well, who come here and come to my Discord, specifically because they know every single person in this Discord is going to be accepting of Tourette’s and know exactly what it is. And so, it’s created a space where people with Tourette’s can gather and enjoy each other’s company and play games without any misunderstandings. So, it’s been really freeing, not just for me, but for loads of people. And I’m really glad that, y’know, all of the people who don’t have Tourette’s have built that space.

Accepting Tourette’s and Tics in a PC World

We’re already moving forward, just because all it takes is awareness. So a lot more people understand my condition now. A lot more people know what it is from a distance, and when I tic in public, there are far fewer people who misunderstand me. And when I explain that I have Tourette’s, people can Google it on their phone and have a little window into what I’m going through. That makes things safer.

But the thing is, people still have a stereotype of Tourette’s that you blurt out what you’re thinking. And if you take a look at any of my most recent YouTube videos, you’ll see that lots of people are still shouting that I’m a racist because of my tics, and on the video where I addressed that directly, people are saying, “Well, it’s in your vocabulary. You must have said it at some point in order for it to be a tic.” 

People still really, really want to believe that you just blurt out what you’re thinking, and that’s the biggest, most risky stereotype about my condition. The more we get to break that down, the more we get to talk directly to people and humanize ourselves. It’s one thing to look at some Google definition of Tourette’s syndrome, but that doesn’t give you a true understanding of what it’s like to live with and struggle with; it doesn’t give people a true understanding of the ins and outs of it. That’s why I get so many questions on stream.

I’m in a privileged position, where I get to humanize my condition and really show people what it’s like to live with. The more of us that are brave enough to come forward and be in the public eye, the safer and more understanding our culture will be. So it’s just genuinely a matter of breaking down stereotypes, one person at a time.

The more people who are aware of Tourette’s, the safer it is for me to get outside the door. And I get to finally be a part of that change, because I’ve been seeing it — I’ve been seeing things get better and better for people like me. More and more people know what it is, which means I get in far fewer altercations in public. And now I get to be a part of that change, which makes me feel incredibly lucky. 

I can’t believe that I get to help change the world.

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Ian Lecklitner

Ian Lecklitner is a staff writer at MEL Magazine. He mostly writes about everyone's favorite things: Sex, drugs and food.