Did TikTok give me TS?

Posted Tue 22nd Feb 2022 at 09:24
by Raven Stovall

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Raven shares her thoughts on this controversial topic.

Hello, my name is Raven. My struggles with Tourette Syndrome started, as far as I know, since I was 23. When people ask me how it began, I say it might be because of a car accident I was in or because of the stress caused by being a novice CNA under COVID conditions.

Both are possible, but I could never say with complete confidence. That’s partly because of a factor I don’t always bring up, not even to medical professionals. You see, the articles popping up left and right telling people that social media platforms like TikTok are causing a rise in tic disorders, where people are experiencing tics shortly after being exposed to it on social media, happens to be a situation that applies to me.

A lot of the tics I went to the hospital with were echolalia tics that I ‘caught’ from content creators. I get extremely hesitant to tell people, especially doctors, about this because I get scared that once I do, I won’t be taken seriously anymore. I’ll be seen as someone who’s only looking for attention.

Been there, done that. I’ve had experiences with medical staff who don’t take me seriously. I can't afford that, not with this. I lost a hard-earned job over this. The reason I have decided to share my thoughts with you is because evidently, I was right to be wary of how people would take that information.

People are walking away from these articles believing that either content creators with TS (or similar) are causing other people to have tic disorders, or they believe kids are just “copying their favourite TikTokker” because it’s “quirky.” I’ve had a little bit of time to entertain this possibility before it became a popular discussion. This is my personal take on it.

As someone who suddenly ended up with the condition, of course I spent a lot of time trying to understand TS and tic disorders. During that time, I’ve come to understand that these conditions aren’t contagious. Someone with TS or a tic disorder can ‘catch’ tics from another person with TS or a tic disorder, but the disorder itself isn’t contagious. So Tourettes isn’t contagious, tics are. I think that makes sense. If Tourettes was contagious, I feel like that would really say something about the human brain that would be absolutely horrifying. If I had a brain that could catch such disorders from other people so easily, imagine what would’ve happened when I learned about things like Alzheimer’s!

Another thing to consider is while it’s less common for an adult to end up with Tourettes, there are a few ways someone can end up with Tourettes or similar conditions, like physical injuries, drugs, infection, some believe it to be a “reactivation” of childhood tics etc. It also can, and has, happened for no known reason at all.

There are so many reasons why someone could find themselves struggling with the disorder. So with these factors to consider, in my mind, it makes less sense for me to say that I caught Tourettes from random people on the internet. But since I didn’t have a severe number of tics until very shortly after seeing it online and the fact that a lot of my tics were ones I remember seeing or hearing from content creators with Tourettes, that detail still isn’t something I thought was wise to overlook so easily.

So, if I’m deciding that it’s not likely I could’ve caught TS because of the reasons stated above, what else could it mean? After much thought, I came up with this answer: if presumably all it took for me to have TS was to be made aware and exposed to it on social media, then I think it’s more likely that I already had it. If my TS didn’t start until I was an adult, then the information I currently have would point to my car accident or stress as the most likely culprit. If being exposed to it on social media was the cause of it, then I likely already had it and didn’t know until I ‘caught’ tics from a content creator.

Perhaps most of my tics were unnoticeable until that moment. This brings me to another subject. Since the publishing of these articles, people are giving TS activists the third degree and blaming them for causing other people to have tics. I personally find it disturbing - as to attack them for that is to attack them for existing on the internet, whilst being disabled, which is messed up in and of itself, but more on that later.

Here’s the thing. I’m operating on the premise that if I got TS after being exposed to it on social media, then I already had it. This would naturally cause me to consider a chance that I had TS for a while and didn’t know about it as most of my tics were unnoticeable. If that’s the case and I found out about it by catching the tics I saw on TikTok, that is not their fault nor their responsibility. If I didn’t find out about it through TikTok, I was going to find out eventually by meeting someone with tics in person or perhaps even by seeing someone exaggerate tic-like behaviours for comedic purposes.

There’s nothing to be done to prevent this and it’s extremely irrational and cruel to ask them to hide themselves and/or their disability to avoid this situation.

Quite frankly, it’s depressing that I must explain this fact. Even as I had to leave my job, even as I had to hang up the keys to my truck, even as I now can’t decide so easily whether it’s safe for me to cook, I didn’t need someone to blame for that. I don’t need to say, “my life blew up in my face and it’s all your fault.” I don’t need to bully disabled people to cope with my circumstances. If I was on the receiving end of that, I would be mortified. So why would I put other people through that?

Navigating this situation has been extremely difficult for me as well as the people around me. I’ve had to learn some hard lessons and it has been my worst nightmare come true as I suffer with bad social anxiety. This is probably one of the hardest things I’ve had to deal with so far.

Even so, I was able to recognize that directing my anger towards people who are raising awareness will only accomplish causing so much harm to the community. If nothing else, I hope you will consider letting them continue to raise awareness in peace. I hope you will also not brush off those who are going through this, as attention seekers. They’re not faking or attention seeking, and if you don’t take them seriously, that’s a choice you’re making for their quality of life. It’s bad enough being thrown into this situation, I can’t imagine how hellish it would be if I had to go through it and have no idea why. Let them have that information, they’re going to need it.

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