is social media self-diagnosis helpful or harmful?

Throughout the COVID-19 pandemic, there has been a rise in patients, specifically teenage girls, with symptoms correlating to Tourette Syndrome. Interestingly enough, the onset of these symptoms seems to coincide with the viewing of Tourette related social media content, particularly on Tik Tok where influencers like Glen Cooney and Evie Meg share what it’s like to live with Tourette, sometimes garnering millions of views.

This isn’t an isolated incident, either, with cases reported in the US, Canada, the UK, Germany, and Australia. The onset of these symptoms, however, doesn’t coincide with the usual progression of Tourette. Typically, symptoms of Tourette begin in childhood and consist of simple motor tics, like eye blinking or throat clearing, that progress over time. In these newfound cases, however, the onset is rapid and symptoms consist of more complex motor and vocal tics, such as arm movement, the use of odd or obscene words or phrases, and even hitting themselves or others. Not to mention, Tourette is predominantly found in boys, whereas this recent increase seems to consist of mostly teenage girls and young women. 

So what can we make of this? Are teenage girls simply copying their favorite Tik Tok influencers or are tic disorders suddenly on the rise? Dr. Robert H. Shmerling, Senior Faculty Editor of Harvard Health Publishing, believes this may be an example of mass sociogenic illness, often referred to as mass hysteria. Dr. Shmerling clearly states that this is not a case of people simply making up an illness or looking for attention. Rather, he explains it as multiple people, typically in close proximity, experiencing similar, unexplainable symptoms. In this case, he believes Tik Tok to be the catalyst of girls across the globe suddenly experiencing symptoms related to Tourette. Though the origins of sociogenic illness are still relatively unknown, it’s possible that stress could be a factor, and in this case, it makes sense considering the current pandemic. Even so, cases of sociogenic illness are rare and more research is needed about the illness. 

Amongst responses to the findings, there has also been backlash to the idea that sociogenic illness is the cause, condemning the possibility as an ableist response. According to the backlash, identifying symptoms of Tourette as anything other than Tourette denies the validity of the symptoms and the needs of those experiencing these symptoms. With Tourette being underdiagnosed and stress being a factor in exacerbated tics, it is possible that young people viewing Tourette related content on Tik Tok are simply putting words to what they’re experiencing thanks to these Tik Tok influencers. Still, with anecdotal findings showing either no response to the usual medications and treatments for Tourette or rapid, dramatic improvements that indicate a placebo effect, it’s difficult to diagnose these cases as standard Tourette Syndrome. In any case, alluding to the symptoms being fake in any way, as the original report has been accused of suggesting, is certainly unproductive. 

Whether this is truly a case of mass sociogenic illness or simply social media users identifying and gaining a greater understanding of their struggles, the Tik Tok Tourette phenomenon is demonstrative of a greater issue at hand: social media self-diagnosis. Internet self-diagnosis has been happening since the conception of Google and WebMD, but self-diagnosis on social media is a whole new ball game. Not only can anyone post whatever information they choose, regardless of its validity, but misinformation can be made more compelling when viewers feel like they identify with and trust those posting the information. Over-simplification of certain illnesses, particularly regarding mental health, is one example of this.

It’s not uncommon to find unqualified influencers posting videos containing only a few out-of-context symptoms, leading viewers to believe that normal feelings or behaviors they experience are actually due to an undiagnosed illness. This kind of remote armchair diagnosis can particularly become a problem when viewers take information, or more aptly, misinformation, at face value without referring to a professional for diagnosis. 

There is pushback to labeling social media self-diagnosis as inherently dangerous, and for good reason. For one, the conversation around mental health has grown immensely thanks to those who’ve created a platform for it on social media. A topic that was once regarded as taboo has become commonplace, helping to reduce the overall stigma around mental health. Furthermore, much like Tik Tok creators possibly helping viewers put a name to their Tourette symptoms, it’s possible that the conversation regarding mental health on social media has helped viewers gain a greater understanding of what they’re going through. This is especially important for communities that may not have access to formal mental health care, giving them a space to better understand their feelings and feel less alone. In fact, there are even some actual mental health professionals gracing platforms like Tik Tok with their presence in an effort to prevent misinformation and promote safe discussion around mental health. 

Whether it be understanding the symptoms of Tourette or destigmatizing the conversation around mental health, it’s clear that there is some benefit to the open discussions created on social media around health and wellness. While there are certainly dangers when it comes to any kind of self-diagnosis or possible misinformation, being able to explore what you may be going through or find solace in a community of those experiencing the same thing is surely more helpful than harmful. The important thing is to practice self-awareness and critical thinking when consuming social media content and, if you can, consult a professional if you are experiencing any symptoms.

Self-diagnosis on social media is a complicated topic, but with social media platforms being more popular than ever, it’s an important topic to discuss, and even more important to do so with empathy and an understanding of both the drawbacks and advantages of utilizing social platforms.

April 27, 2022

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