Kind of a personal post but whatever.
I started this blog in 2017, as a young girl with recently diagnosed Tourette Syndrome and no community whatsoever. Before TikTok, before fake disorder reddit groups, before there was any awareness on Tourette Syndrome at all. If you tried to search for a Tourettes community on any social media, you were met with misinformation, mockery, and usually just ableism. "Funny Tourette Syndrome Try not to laugh" videos or "What do we want? A cure for Tourettes" memes.
That was except for Tumblr.
The first time I went on Tumblr and found people with TS here, I cried. It was the first time I had ever seen people like me, or even seen my disorder depicted in a way that wasn't cruel. I know, it's super corny.
But 5 years ago, that was all I had. Tumblr was the only place I could talk openly about having TS without being made fun of.
Then, for a small, small, period of time in ~2020, which I now refer to as the golden age of TS awareness, people with Tourette Syndrome started finding community on TikTok. People started educating others, spreading awareness, and building up community like the one I had found here. That was really nice.
Then it changed again. TS became a trend associated with dyed hair, sexy dances, and elaborate makeup. People with coprolalia were once again shunned unless we could be laughed at. I'm sure you all remember the "oodie kids" that mocked people with Tourette Syndrome while hiding behind online anonymity. A certain Tiktoker was accused of faking, and harassed relentlessly, sent death threats, and essentially bullied off the Internet in general (I don't ever condone behavior like that even if it is supposedly proven a person is "faking").
Big YouTubers covered that story. I consider that to be when the golden age ended. All of a sudden it was okay to mock and harass Tourettics again, because "this person could be faking, it's for their own good". Tourettics that had been talking about TS for years were called fakers just for having dyed hair or piercings, because that was associated with "fakers". The majority of popular TS-related tiktokers stopped posting about TS, or stopped posting at all. The few who remained wanted to be seen as legitimate, hence all the "Real person with Tourettes reacts to FAKER" videos we have now. It's still a desperate plea to be accepted by the majority.
We've come full circle. The normal schoolyard bullying I experienced that included name-calling and laughing has evolved into something much worse: being filmed and posted online. I will never know where those videos end up. I will never know whether someone on the other side of the world is laughing at me. I will never know if my friends that see them stand up for me, or if they just scroll past. To me, that's much worse than a kid on the playground shouting slurs at me.
Despite all this newfound "awareness", Tourette Syndrome is still RARE. If you have corpolalia, there is a huge chance that even in TS support groups you will never meet someone else with corpolalia. That's why we find community online. But now that community has been ruined.
In the end Tumblr is still the only place I can talk freely about how TS affects me. But I'm hopeful. I'm hopeful in a few years the faker witch-hunting will be over. I'm hoping then people will leave us alone. But most of all I'm hoping that younger tourettics who aren't being believed by their parents, Tourettic teenagers with dyed hair and piercings, and literally any tourettic going through public school right now can find empathy and acceptance, whether that be online or in real life. I don't want anyone to ever feel how I felt- alone.