I was diagnosed with Tourette’s syndrome on December 23rd, 2020. This was a huge relief; to be able to finally put a name to what I had been dealing with for over a year at that point was important to me. But my problems didn’t magically come to an end with this diagnosis, it has been a frustrating condition to live with. rusbank.net
I have had to explain to everyone around me not only that I have Tourette’s syndrome but also what exactly the syndrome is.
According to the CDC, “Tourette Syndrome (TS) is a condition of the nervous system. TS causes people to have ‘tics’.” Tics are sudden, uncontrollable movements or sounds that a person does repeatedly. Examples of tics are things like making sounds, clearing of the throat or jerking of an arm. The Tourette Association of America states that to make a diagnosis of Tourette’s syndrome “1) At least 2 motor tics and at least 1 vocal (phonic) tic have been present, not necessarily at the same time. 2) Tics may wax and wane in frequency but have occurred for more than 1 year. 3) Tics started to appear before the age of 18. 4) Tics are not caused by the use of a substance or other medical condition.” I also had to be cleared for other illnesses like OCD and ADHD.
https://rusbank.net/offers/microloans/zaymyi_bezrabotnyim/ My most common tics at the moment are jerking my neck back, hitting myself or other objects and shouting out random sounds. This has been painful to the point of bringing me to tears and creating extremely embarrassing experiences for me. I’ve dealt with a lot of people making fun of me, imitating my tics (in turn making them worse) and with a LOT of weird stares. I came to a point where I avoided talking to strangers, and I was scared of going to class at all. I went from living a completely normal life to wanting to isolate myself all the time. I had to suffer with a lot of head and neck pain. I just wished I could be normal again.
Dan Greenberg is a bass player who also suffers with Tourette’s wrote, “There was no hiding from my tics; it was like I was wearing a giant sign that read, “Look at me! Make fun of me!” I completely agree with his description of what it’s like. Whenever I tic, I become hyper aware of my surroundings. It feels as if I’m being judged and seen as different, and even worse: I can’t control it. I can’t decide to just stop.
I’ve seen an influx lately of others on social media, particularly TikTok, of videos where people that have Tourette’s syndrome attempt to raise awareness or show their tics while they do activities like cooking or singing. These videos are not the issue. Rather, TikTok seems to have become notorious for the amount of people on there who claim to have multiple illnesses like depression, anxiety, ADHD, ODC, Tourette’s and even autism with no professional diagnosis. Raquel Croston writes about a particular case of this in an article, saying, “A since-deleted video of a young girl went viral after she ‘blind’ reacted to a classical composition of ‘Play Date’ by Melanie Martinez. Existing now only on forum websites, the fame the video garnered quickly turned to rage and criticism when it was revealed that the user was self-diagnosed [with autism].” Illnesses like these are not something you just diagnose yourself with! Self-diagnosing yourself not only causes others to think an illness is what you’re falsely portraying it as, but it also causes others to think that those who truly have the illness are also just faking it for attention. I come across videos (such as this one) where people are blatantly mocking Tourette’s syndrome for attention, and as the person in the video discussed, it makes me feel like people won’t believe me when I say I have Tourette’s because of people who fake the syndrome.
Social media provides a twisted, picture-perfect version of reality. It’s rare to find an accurate portrayal of an illness online. People do not post the painful reality of illness, and while it is a cliche, the internet truly is a space where nothing is as it seems. Websites like TikTok and Tumblr attempt to aestheticize illnesses; pushing an agenda that depression and anxiety are ‘quirky,’ ‘beautiful,’ and personality traits. At times, people are made to feel ashamed for NOT having something ‘wrong’ with them. This, in turn, inspires others to glamorize and fake illnesses since they do not have an in-depth, personal experience with the illness itself.
Depression is not just being sad, anxiety isn’t just getting nervous, ADHD isn’t just getting distracted, OCD isn’t just being a neat freak, Tourette’s isn’t just sounding and looking funny, and autism isn’t for you to use to look ‘adorable.’ Illnesses go a lot deeper than can be seen online. All illnesses can be incredibly hindering to people who struggle with them, and they’re not for you to self-diagnose yourself with and use it to your advantage online for likes. If you want to destigmatize illnesses, please do! However, please be sure you actually have the illness you claim to have so you can be an accurate representation of the illness you want to advocate for.