What Do Teenagers Think About Misophonia on Social Media?

I have found myself dissatisfied, and even upset, about the way misophonia is portrayed on social media. But who am I to judge, really? I am but one person with one opinion. I was born in the 1960’s, and I didn’t grow up with social media. I grew up during a time when you only had one remote to work the television, and I admit I long for the simplicity of that time. I do not pretend to dismiss the impact social media has across many aspects of our lives, and in my gut, I know that misophonia’s story is being written on social media. I thought, who better to talk to about this than two teenagers with misophonia, both of whom are also advocates: seventeen-year-old Sophie Y of the advocacy group TEAMS (Teens for Education and Advocacy on Misophphonia and seventeen-year-old Kelly M, who led the development of the teen resource page for SoQuiet.

Concerns About Anger and Rage Stereotypes in Misophonia Representation

My first concern about the representation of misophonia on social media has to do with the emphasis on anger and rage. I know that anger is certainly one emotion that a triggered person experiences, but there are many more. I’ve often feared that the public will think of those with misophonia as violent, which is untrue. The following are quotes from Kelly and Sophie addressing this matter in our conversation:

Kelly: I don’t love how it is typically portrayed in social media. I’ve seen so many POV [Point of View] style videos where it's someone acting like they have misophonia and acting triggered by certain sounds, and it always comes off as quite tone deaf. Sure, it introduces more people to the word and the disorder, but anger and discomfort don’t even scratch the surface of what this disorder truly is.

Sophie: I think most of the time, expressing those emotions from people with misophonia is a way to try to connect with other people who feel those adverse emotions. But to bystanders who might not have misophonia or don't understand it, I think misophonia could be misinterpreted as overly aggressive and create this negative stigma around people with misophonia… I would even go as far to say that people with misophonia are actually quite shy and they would rather not be explosive to others. I think that people who experience a lot of frustration and rage with it, rather than turning it outwards, a lot of the time they turn it inwards.

Besides being impressed with the clarity of these answers, I was relieved to know that this wasn’t just my observation and is certainly something that we as a community need to be wary about, and perhaps even try to change.

Issues With Diagnosis and Oversimplification on Social Media

Kelly pointed out another issue that I had not thought about: people are being diagnosed by social media therapists as having misophonia.

Kelly: The other main type of videos I’ve seen are people, doctors, therapists, or other medical professionals saying, “Do you hate the sound of chewing? You may have misophonia.” It often comes off as a way to gain views by exploiting people who may suffer from misophonia but don’t have the name for it yet. It also seems like a cheap way to diagnose someone in the middle of a scroll on social media. It seems like a “hey, so… you hate chewing sounds, this is what’s wrong with you.”

That’s a minefield I am staying away from during this post, but please know Kelly's words are not lost on me. I have always hoped for more ethical behavior amongst those in the medical/mental health field regarding the claims that professionals make in terms of “curing” misophonia. I had not thought about what it must feel like for a teenager to be haphazardly and perhaps inaccurately diagnosed via TikTok or Instagram, etc. I wrote about this ten years ago in my blog, and I thought that since we have misophonia measures now, this problem would be attenuating. Obviously not.

Sophie also brought up a very astute observation during our conversation:

Sophie: And I also wanted to add that I think it's hard to understand the complications with misophonia and the little things, because you know, social media is very geared to summarizing things... And I think a lot of things are lost in translation, and I think that's one thing creators can kind of end up falling into a little with that.

That was an eye-opener for me as well, but now it seems so obvious when I mull over it! Social media is a summarizing vehicle. Misophonia is a very complex disorder. The same is true of other conditions. Yet, misophonia is relatively new, and the background knowledge necessary to begin to understand misophonia is nascent and is still not widely available. Accurate summaries can be misleading. Imprecise summaries easily approach mistruth.

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How Teens With Misophonia Want Representation to Improve

Finally, I asked both Kelly and Sophie how they each wanted to see misophonia represented on social media. I will end this post with their answers because they most certainly speak for themselves.

Sophie: I think as time goes on, it will improve, but I feel that because misophonia is such an underrepresented community still in social media, people are just trying to get the word out there, which is both helping our community, but can also bring a few downsides. But yeah, still good to bring awareness though.

Kelly: I want to see more people talking about misophonia in a positive and accurate way! Yes, absolutely, it is a struggle that so many of us deal with each and every day, but it shouldn’t be taboo to discuss or something that people don’t want to hear about. It is a community of so many people that support one another and come together to lift each other up. We need allies more than ever. Social media is something that millions and millions of people use each day to learn, discover, and create. When we use social media to accurately represent us, it has the ability to work wonders for public understanding of who we are.