By Paige Kowalski, NJCTS Youth Advocate
As TikTok becomes a more and more popular content creation app, it is very common to see viral users all over your “for you page.” In this day and age, being paid for acting as a creator is a high paying job that allows for money on simple videos that last only a few seconds. Becoming a creator is harder than it seems, going against the algorithm is an uphill battle that many are constantly fighting. Fitting in with the vast number of videos that can be seen on each individual’s for you page is a hard feat, but for many it can be easy enough as faking a disability for views.
Seeing teenagers and even adults faking Tourette Syndrome online is an exhausting experience as someone with diagnosed TS. To sift through so many videos and see the blatant ignorance of someone with “Tourette Syndrome” who is unable to really provide any information about their diagnosis and experience shows a great deal of proof against their case. For people like me who have been heavily involved in advocacy online and in person, it is clear to see who is truly diagnosed with Tourette and who is using a disability as a front to watch their views climb.
This phenomenon can be seen with many other disabilities and diagnosis as well, especially on TikTok. It can be disheartening for those who are truly struggling and putting their stories out there to benefit the public when there are people spreading false information and faking their tics/other diagnosis. Limiting the voices of the people who can truly raise awareness for this misunderstood disorder is a harmful thing to do, and to witness this along with so many others who have TS puts us in a difficult position.
To publicly discredit the “diagnosis” of these people can lead to an even more problematic issue than their misinformation, but to allow them to spread false information like “tics are suppressed which is why I don’t do them anymore”, or even the wild claim of “My doctor said it just went away and I won’t have to deal with it again” is equally as harmful. When these claims are made it truly validates the struggle it is and outlines the exhaust those with TS face in their everyday lives.
Why would we make it up? Why would we make up the exhaust, pain, and struggle we face just to be invalidated by those online? It is an insane phenomenon that I hope doesn’t continue, but in our world of constant contact and online fame it is one that undoubtedly will be seen again.
View our PSAs about social media bullying and misrepresentation of TS.
