Having a disorder that few have heard of is frustrating. Having a disorder that is becoming more and more misunderstood is terrifying. When you see misophonia in the press, you are shown a disorder that’s classified as “chewing rage,” “sound rage” and other derogative terms. The truth of the matter is that my misophonia is much more than that.
What these sensationalist articles don’t say is how difficult it is to get out of bed when your sensory system is overloaded. How fabrics, aromas and other stimuli can hit you in the face. The world of sensory overload is much larger than auditory over-responsivity, and yet, the media continues to portray us as “sound haters.”
My sensory disorder makes it hard for me to attend family functions, go out with friends and sometimes it even makes me unable to leave my bed. If I’ve had triggers accumulate too much in that week, I will become lethargic, and if I don’t slow down, I get a migraine. My brain and body are in a constant fight with the world around me. Another proponent of the disorder I have, as do others, is a reaction to visual stimuli. This has often been overlooked by the media. For some of us, swaying, leg-shaking and other visual sensations can cause the same fight/flight/freeze response. Paired with smells that make us uncomfortable, and fabrics, this can often mean the entire world becomes a battleground.
There is no differentiation between visual triggers and auditory triggers for me. Both are absolutely infuriating and have made my day-to-day life nearly impossible. Though I keep going and try to raise awareness where I can, the truth remains that some days I just can’t face the stimuli. As a 22-year-old, this has had a huge impact on my life. Due to triggers I was forced to switch from my brick-and-mortar university to an online option. Socializing has become a pain. Relationships are strained.
When starting misophoniaawareness.org, I was scared and confused. I had no idea what I faced, but I moved forward. Today I can say that I have been working as hard as I can to help relieve stigma for people with misophonia. But media can makes this hard. We are constantly feeling belittled as stories show people with misophonia in exaggerated situations, often perpetrated as “weird,” “unusual” or “strange.” We are not a story to laugh at. We are real people struggling with the world around us, knowing we will likely face fight-or-flight situations every day.
I am frustrated by our treatment by internet memes. I am frustrated that misophonia and other disorders that aren’t better understood are often treated as little more than a talking point for laughter. While I try to fix this by helping run a news site and magazine Misophonia International, there is still much to be done. Advocates for all disorders need to band together and help the world understand that we are more than a label. We are individuals fighting as hard as we can to live a “normal” life. Some days are harder, and other days we are able to live comfortably. Some days we meet in the middle. This is not a sign of weakness but strength.
Misophonia is not chewing rage. It is not sound rage. The anger we feel is often after there are no other emotions left. We are often first scared and uncomfortable, and it can be difficult to control our emotions. The anger comes when we realize there is little left to feel as the world becomes a strange mixture of sensory overload.
Misophonia may not have a cure, but it can be greatly lessened by the support of loved ones. Simply knowing the person with you is willing to accommodate or understand can have a huge impact on the life of people with misophonia. The anxiety before a trigger is much lower when you know you have the support of your companion.
As for misophonia itself, people with misophonia should try to keep their stress levels as low as possible. It’s OK to feel overwhelmed and take a break. There is no “failure” in taking as many mental health days as possible when your brain needs it.
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Shaylynn Hayes is a writer, advocate, graphic/web designer, and student. She is the Editor-In-Chief of Misophonia International and Author of "How We Survive Ourselves: A story about Depression, Misophonia" (available here: https://amzn.to/3eFDs53), "Acceleration" and "Full of Sound and Fury: Suffering With Misophonia". Misophonia has created trials and tribulations, but it’s also changed her life in good ways. Shaylynn spends much of her time advocating for misophonia.
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