What It's Like to Have Misophonia
I'm sitting in the corner of my favorite coffee shop, angling my entire body toward a wall. Earbuds in to eschew the sound of the two ladies talking wildly and gesticulating next to me.
My husband sits five tables down, alone.
I was sitting with him, but the guy at the next table is a "tall typer", a term I've given to all people who hammer away at their keyboards like an impassioned concert pianist. I can't be by that. I can't see it or listen to it. If I do, my brain explodes.
Why? Because I have misophonia.
I didn't know it even was an actual thing until a few years ago. My friend read this article in the New York Times and forwarded it to me. Molly, I think this is you.
Whoa, that IS ME!
I was relieved. Just knowing I had an actual thing was one of the best things I've ever heard.
I've spent my entire life thinking I am absolutely nuts.
Ever since I was a kid, I've been ashamed by an issue I have with sounds. It's without a doubt the thing I dislike about myself most. If a magical genie gave me three wishes, my first one would be to make the misophonia go away (I'd then wish for a billion dollars and for all pizza to be void of gluten and carbs, but still taste the exact same). From going to the movies to working in an office, this disorder makes daily life challenging.
It sucks.
I'd tell you the quick-n-dirty facts about misophonia, but they actually did a pretty great job of that in this TODAY show clip:
But if you didn't feel like watching the video, the gist is that certain noises (in my case chewing, popping gum, humming, typing or clicking with a mouse) cause me panic and rage. And not in a "that's really annoying" way.
It's in a I want to punch you in the face way.
Last week, I literally speed-walked away (while yoga breathing and plugging my ears and shielding my eyes) from the guy checking membership cards at Costco because he was chewing gum with his mouth open. A wee bit extreme, but it's how I deal.
Like most people with misophonia, I first started experiencing symptoms around age eight.
It began with food.
I hated hearing a spoon hit a cereal bowl, the muffled sound of a hand digging around a bowl of popcorn or slurping soup. I know most people dislike those noises, but it would cause me to act out. Break things, scream, or avoid eating with my family all together.
Twenty-some years later, I'm still dealing with these same noise problems. In a lot of ways, they've gotten worse. My list of triggers continues to grow, and over the past 10 years, it's moved from just sound to sound AND sight. For example, seeing someone across the room chewing gum causes me to panic, even if I can't hear them.
I know, it's weird.
However, 20+ years of this ridiculousness means my coping mechanisms are dialed in.
For example:
- I almost always have headphones with me, perfect for muffling noises at a coffee shop or smacking gum on an airplane. (BTW, if you have misophonia, airports are the absolute worst. Everyone chews gum at the airport)
- Earplugs. I almost always have earplugs.
- My radio is always on, which helps muffle annoying noises.
- I downloaded the White Noise app which I play to drown out distracting sounds.
- I purposely don't spend time with people who constantly chew gum. Yes, really. I avoid spending time with people who constantly chew gum.
- I practice deep breathing techniques to calm myself.
- I've learned the art of subtly plugging my ears-- as seen in the photo below.
However, of all the things I do to manage my misophonia, the most helpful was meeting another person who has it. Long story short, the same friend who alerted me to the NYT's story introduced me to her friend who also has misophonia. She's normal and awesome and so funny and empathetic.
It's a total relief to have someone who gets it.
We live in different cities, but when one of us is having a particularly bad noise day, we will text each other. "The lady on the bus next to me literally won't stop humming AND she's chewing gum at the same time. Losing my mind!" Just the act of voicing my frustration is a HUGE relief.
This is precisely why I'm writing this post.
Though misophonia is a neurological disorder, there's not a lot known about the condition and there is no cure. Some doctors speculate it's a form of OCD, others believe it stems from some faulty wiring in the brain. What is known is that this disorder is real and it can be very debilitating. Hypnosis, Cognitive Behavioral Therapy and Tinnitus Retraining Therapy can help (full disclosure: haven't tried any of these), but I also read just talking about it can ease misophonia.
So here is it. I have misophonia. Whew.
My greatest fear in regards to this used to be that people would make fun of me, purposely smack their gum, or write me off as hysterical or overly-sensitive.
Today, my fear is different: I don't want people to feel self-conscious eating/breathing/living around me. I'm already aware that some friends and family do feel self-conscious. I'm sorry guys! To be clear, I don't have a fight-or-flight reaction EVERY time some one is eating around me. If I'm in a place with a lot of stimuli (a busy restaurant or fun party), I don't notice a lot of the eating noises.
I do, however, always notice the gum.
Always.
Even if you're not not smacking and think there is no way I noticed (I did notice and I am just not saying anything). I can even hear it over the phone. Not so fun fact: The first thing I do when I walk into a room is scan it for gum chewers. If I see anyone a-chewin', I do everything in my power to not talk or look at them until they spit out the gum.
I can't help it. It's so dumb.
But I digress.
I am already feeling pretty good about sharing my story. Writing this was oddly therapeutic. I'm trying to get over that feeling of shame and embarrassment and I think this a step in the right direction.
I'm happy to go more in depth on all of this, so if you have any questions about misophonia, please use the comments section! Other coping strategies or treatment ideas are obviously welcome.
But if you could spit out your gum before commenting, I'd appreciate it.
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P.S. Two other things I was initially embarrassed about, but ended up being okay: doing stand-up comedy & putting air in my tires.
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