HUFFPOST PERSONAL

'Your Chewing Sounds Like Nails On A Chalkboard': What Life With Misophonia Is Like

I can’t think clearly when I’m hearing trigger sounds. My only thought is of the need to escape.
"I thought I was alone because no one else I knew heard things the way I did," the author writes.
"I thought I was alone because no one else I knew heard things the way I did," the author writes.

I look forward to the Golden Globes and the Oscars the way sports fans count down to the Super Bowl. But for me, going to the movie theater was always more of a sport than an art. 

I’d go armed with earplugs to block out the sound of potential popcorn crunching and candy wrappers rustling. I’d dress in my standard uniform: a hoodie to block out my peripheral vision so I didn’t actually catch anyone in the act of eating (yes, even the visual of someone chewing is a trigger for me, a painful reminder of how much the sound hurts my ears). I’d select a seat next to the wall with my husband sitting on my one free side as a buffer between me and potentially grating sounds. If I happened to sit next to a noisy stranger, I would know when to admit defeat and find another seat or simply leave the movie early. 

Until recently, I never realized my adaptive defense to these sounds was actually the result of an undiagnosed hearing condition I’ve suffered most of my life, one in which the background noises most people tune out — chewing sounds, gum popping, yawning, keyboard clicking, dogs barking, sirens and small plane engines, among others — sound like nails on a chalkboard or a smoke alarm in my ears, and evoke a fight-or-flight response in me. 

From as early as I can remember, I’ve tried to hide this debilitating condition, not knowing exactly what was wrong. I can distinctly remember hearing the sounds my younger brother made eating breakfast every morning when we were growing up. Despite being in a closed bedroom all the way down the hallway and around the corner from the kitchen, the way he dragged his teeth across his spoon with each bite made me want to scream, to hit him. But, knowing that no one would believe I could hear that sound from so far away, I tried to hide my frustrations. 

In school, I began avoiding making friends with kids who chewed gum and I loved teachers who forbade gum-chewing in class. Once, when I was driving my younger brother and he refused to stop chewing his gum, I kicked him out of the family van and made him walk the rest of the way. 

I thought I was alone because no one else I knew heard things the way I did.

I was elated to find a name for my suffering and was surprised to learn that others were bothered by the same exact repetitive sounds and movements as me.

That all changed two years ago when my son-in-law sent me an article about misophonia, with the question, “Is this you?” I Googled misophonia and discovered it is a recently identified neurological disorder. I was elated to find a name for my suffering and was surprised to learn that others were bothered by the same exact repetitive sounds and movements as me. 

I learned that those with the condition are more often women, and, like me, their misophonia became more of an issue in their teenage years. As I read, I remembered the day I took the ACT and how I sat across from someone who had a cold and coughed and sniffed through the entire several-hour test. I hadn’t yet discovered one of my coping tools — earplugs, which I now never leave the house without — so I took the test pressing one shoulder to my ear while holding my pencil and plugging my other ear with my free hand. 

To this day, I can’t think clearly when I’m hearing trigger sounds. My only thought is of the need to escape while begging “Please” to the universe, “Please make the sound stop.”

What I learned from reading and my own experience is that sadly, the more you are exposed to a particular sound, the stronger the trigger becomes, which is why misophonia sufferers are most often bothered by family members’ chewing sounds — the ones they hear the most often. 

Over the years, my tolerance for my husband’s chewing, flossing his teeth, leg-twitching and typing has dwindled to the point of being nonexistent. Now, when I eat dinner with him, I sit at the far end of the table and wear earplugs. He flosses in another room, only types on his phone or keyboard behind a pillow or in another room, and tries very hard not to twitch his legs. 

After watching the documentary film “Quiet Please,” which shows a mother who eats every meal in the pantry while her three children and husband eat at the kitchen table — and, in another family, a young adult daughter with misophonia who texts her mother from a different room because she can’t stand the noise when they’re together, I wept, realizing how the condition can be even more extreme for some. 

When my son-in-law sent me the article, I had been suffering more than ever from what I then called my “super sensitive ears.” A year earlier, we had moved to midtown Manhattan, on the west side, where the sounds of planes, helicopters, sirens and honking cars constantly bombarded me. I was living on the edge, pacing around the house with anxiety. As an escape, I dreamed of shooting paintballs at the helicopters and considered using what little energy I had left to try to get stricter sound pollution laws passed.   

As I learned about misophonia, I grasped on to the new information I discovered like a lifeline. I explored cognitive behavior therapy and sought out an audiologist who prescribed hearing aids that had been designed to distract me from my trigger sounds. Sadly, both the therapy and hearing aids resulted in higher anxiety and stronger reactions to my trigger sounds. 

Discouraged, I soldiered on, trying out the solutions I’ve mentioned earlier along with some others, including hoodies to block visual cues, earplugs to block out painful sounds but not people talking to me, noise-canceling headphones for being outside around my worst triggers (city and air traffic), and keeping a fan on constantly inside the house to mute the sounds that caused my worst anxiety. 

My new coping mechanisms have introduced challenges. For one, when I wear noise-canceling headphones to block out the sounds of the noisy outside world, obviously I can’t hear anyone I’m with. That has meant more planning and adjustments. When my husband and I rode the subway together, I would wear my headphones and, instead of talking to each other, we’d play Scrabble together on our phones. Since we’ve always loved taking long walks together, we’ve had to find quieter spots, such as in the Forest Hills area of Queens, where there are several miles of wooded and mostly peaceful trails. Instead of eating out, we would order take-out or eat when restaurants were less crowded.

Besides my physical tools, the best mental coping tool I’ve received has come from my husband.

“Think about misophonia like having a bank account — in which having the emotional, mental and physical bandwidth to spend on triggers is in short supply,” he suggested.

By the end of the day, if I have been overexposed to trigger sounds, I am an emotional wreck, unable to think clearly, short-tempered and exhausted from battle. My husband suggested I spend my “trigger money” — that is, my emotional, mental and physical resources — wisely.

Fortunately, I am a writer and work from home. That means, most days, I’m inside my apartment and I can listen to whatever sounds I want, ones that don’t put a drain on my bank account. I play movie soundtracks while I write and listen to a lot of NPR and audiobooks while I cook, clean, do laundry and exercise. I even swim with a waterproof audio player.

But when I’m with other people, I inevitably have to listen to unwanted sounds; that is, spend my “misophonia money.” This means now I carefully plan my activities, making sure each day has trigger-free hours to replenish what I’ve spent on trigger sounds.

This planning may seem ridiculous. The symptoms may seem easy enough to dismiss. I’ve had plenty of people not take me seriously, which is why those of us with misophonia are hesitant to tell people what’s going on. But since I found out there’s a name for my disorder, I have started to slowly confide in a few close friends and extended family members. Their support and the support of my immediate family has been so rewarding that I feel less alone. 

My husband, adult children and their partners put up with fans running all over the house, even in the winter. My daughter and son-in-law, who are house-hunting, eliminated one area because it was too near a military base with constant helicopter noise. My husband makes sure I have earplugs in before he kisses me. Yes, even the sound of kissing drives me nuts.

I hope that someday, research organizations that I support with donations will discover a treatment or way to eliminate my worst triggers — sirens, planes, helicopters and motorcycles. Until then, I’ll continue to plan my days to keep my exposure to a minimum and otherwise endure sounds when I need to. 

The way noises affect me and how I deal with them may seem extreme, but I’m determined to live a full life. Every day, it’s me against my trigger sounds, and I’d like to think I’m winning.

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