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I did everything I could to avoid sitting next to my dad at dinner. My mom would call two or three times before I would appear in the kitchen, and I’d wait for my sisters to fix their plates before fixing mine. Dad was already seated at the table.
Through unspoken channels, my sisters knew that I wanted them to sit next to him so I didn’t have to. Sometimes they indulged me and sometimes they didn’t. I often left dinner angry. Every choice around the dinner table seemed like a deliberate attempt to antagonize me.
Not that it really mattered where I sat. I couldn’t stand to be in the same room with my dad when he ate. His eyes were big and intense when he chewed, he looked as though he was pissed at his food. Air whistled in his nose as he breathed between rapid bites. He’d wash down his meal with tea, crunching on the ice cubes. I wanted to claw across the table and strangle him.
One night I couldn’t stand it anymore. I suggested he try chewing with his mouth shut. Bad idea. A fork sailed over my shoulder, struck the window behind me, and then dropped to the floor, ringing in the silence that followed.
My dad’s noisiness at meals had less to do with him, and more to do with me. “Smacking” is what I’ve always called my aversion for the sounds people make while eating. For most of my life there was no other name for it. Today it’s called misophonia, a term invented in 2001 by married Emory University School of Medicine professors Pawel and Margaret Jastreboff.
As a condition, misophonia is characterized by a fight-or-flight response to everyday sounds such as eating and breathing, making it distinctly different from the more neurotypical irritation people feel when hearing a baby cry. When sufferers like myself hear a “trigger sound,” we feel an instant, blood-red rage, followed by an overwhelming urge to escape. According to a 2017 study in the journal Current Biology, the brains of people with misophonia are wired differently, particularly in the anterior insular cortex, a region of the brain responsible for joining our emotions with our senses.
“The experiences you describe are absolutely classical to misophonia,” Jastreboff told me in a recent call, noting that while reactions and symptoms vary from person to person he’s seen many patients like me. “You are not unique.”
Based on his research, Jastreboff estimates that somewhere between 2% to 3% of the U.S. population suffers from some form of misophonia that’s severe enough to require treatment.
“When people hear these sounds, they react with intense emotions,” says Dr. Martha Johnson, an audiologist who founded the Misophonia Association. “It isn’t a higher cognitive function where you’re going, I don’t like white chocolate lattes. This is like a yellow jacket sting: You immediately slap, jump, run, and scream.”
Common trigger sounds include the noises made by eating, drinking, and breathing. I have identified my own triggers as crunching, gum chewing, lip smacking, and whispering. I can’t remember when the first three developed; it’s possible they predate memory. But I can pinpoint the genesis of whispering as a trigger, which materialized during my parents’ divorce when I was a teenager. I remember hearing them hiss back and forth, the sharp ends of their whispers like paper shredding behind closed doors. I was relieved when they finally separated — not only did it put an end to their incessant whispering, but I no longer had to eat at the same table with my dad.
Knowing about a condition and learning how to live with it are two very different things. The other night my fiancée and I were getting ready to watch a movie when she sat down with a bowl of ice cream. I didn’t make it five minutes before I stood up and paused the movie. I could have easily thrown the remote through the TV. I wanted to. “Where are you going?” she asked as I headed toward the kitchen. “To get some ice cream,” I said, struggling to keep the irritation out of my voice.
I was surprised to learn that my own coping strategy is quite common. It’s called “mimicking” — as in, people with misophonia find it easier to tolerate triggers if they make the same noise, too. This is something I have done since I was a kid. Back then, as soon as I finished my plate, I would run upstairs and close the door to my bedroom. Safely alone, I was like a rocket ready to explode: I rolled around my bed like a wet dog, wildly mimicking the horror I had just witnessed downstairs. I hissed and cussed, calling my father names and mocking the wet smack of his lips, the crispy, crunching, grinding of his jaw, the small huffing noises he made as he churned huge mouthfuls of food. As strange as it is to look back on such behavior, doing this for a couple of minutes actually had a calming effect, like releasing steam from a valve. I was able to go on with my evening without punching a wall.
Back with my fiancée, I lingered in the kitchen for as long as possible. I listened for the tinkling of her spoon, hoping she would go ahead and finish her ice cream without me. Finally she called from the next room, asking what I was doing.
“Unpause it,” she said, reaching for the remote. She knew exactly what I was doing. I held the remote away, insisting we eat our ice cream and then watch the movie. But she said no, she wanted to watch the movie while eating her ice cream — that was the whole point.
“I don’t have time for this,” she said finally. “You can watch the movie alone.”
These are the sorts of reactions people with misophonia fear the most, and one of the reasons it remains something of a secret. When a person’s response isn’t anger, it is invariably confusion or self-consciousness. Misophonia is hard to say, harder even to explain. It sounds suspicious, like a self-diagnosis. Oh, yeah, sure, I hear people thinking. No one likes open-mouth chewers. Get over it!
Lately articles on misophonia have been popping up everywhere: on NPR, The Washington Post, The New Republic. As research and awareness slowly grows, sufferers are starting to share their experiences. Many of these articles do a nice job defining the condition and explaining the science behind it, translating brainspeak into everyday language. I am increasingly feeling a sense of recognition after years of frustration.
But one thing I have not seen discussed is the shame experienced by those of us with misophonia who burden our loved ones. “For many patients, this is a crucial problem,” says Jastreboff. “I’m always asking, what’s the worst part of misophonia, why is misophonia a problem for you? I’ve had patients tell me it’s the shame they feel for creating conflict around reactions they can’t control.”
A great deal of my life is spent in a limbo between dying to escape and forcing myself to stay at the table while enduring wave after wave of murderous rage, often toward the people I love.
This resonated deeply: Guilt and shame have been my predominant responses to a lifetime of misophonia. Actively avoiding an activity as fundamentally human and communal as eating is the epitome of antisocial. Which means a great deal of my life is spent in a limbo between dying to escape and forcing myself to stay at the table while enduring wave after wave of murderous rage, often toward the people I love. Or if I am too exhausted to work on myself, I isolate myself behind a closed door or a waterfall of white noise, at peace but alone.
I can only imagine what it must be like for my fiancée, returning home to a repressive regime where the slightest offense, a smacking of the lips, can cause instant anger. My parents must have found my behavior incredibly disrespectful. To my dad it must have seemed like a slap in the face. I had essentially pointed a finger at him and said, “I can’t stand you.”
I tried to bring my mom into the fold. As soon as my dad stepped outside to finish grilling, I begged her to let me turn on the TV or play music. She listened and tried to help, but her confused attempts to understand what I could only half-explain mirror the confusion of so many, doctors included. According to the study in Current Biology, people with misophonia often “do not report for fear of the stigma it might cause… and clinicians are commonly unaware of the disorder.”
In an op-ed for The New York Times, Dr. Barron Lerner, a primary care physician, describes his difficulty treating patients who trigger his own misophonia. He mentions something he calls the “incredulity factor” — a personal term for how incredible it seems that no one else finds the same noises as distressing as you: “For years, I could not believe that my friends and relatives were not getting as upset at what I considered rude behavior. They were getting frustrated with me for focusing on sounds they did not really hear.”
I remember feeling this same way as a kid. I couldn’t understand how my mom and sisters were so unbothered, so seemingly unfazed by my dad’s eating. How did they not hear it? Was it possible it was just me? It was like living in a nightmare, hearing something no one else hears.
These days, I find myself wondering what role has misophonia played in forging who I am today. What does it mean if avoidance is an unavoidable part of my personality? It has, after all, shaped the way I experience the world. From a neurological perspective, the science is relatively clear: Brain structural differences exist in those with misophonia. But the nature of these differences remains unknown.
I have noticed other connections that seem to be rooted in the same general vicinity as misophonia. I have epilepsy, for instance — another neurological condition. I also suffer from the infrequent panic attack. Both indicate a brain easily overstimulated, unable to censor the sights and sounds of the world. I have also noticed — and it has been noticed by others — that I can be distant in my relationships. I find it difficult to get close to people, both emotionally and physically. I don’t like to be touched, I can’t stand it when things squeeze me — a belt, a shirt, the waist of my jeans, my fiancée. I practice affection as though it were an unnatural art. I mentioned these things to my sister, a clinical psychologist specializing in anxiety disorders, and she acknowledged that there may be some relation with general sensory sensitivity.
I don’t know. Nor does she. Neither do the doctors and researchers who study it. What I do know is that misophonia sucks the life out of relationships. It’s not just my dad and my fiancée; I asked a friend to spit out his gum and he called me a controlling asshole. I excused myself from a meeting at work (again, feigning a bathroom break) because two coworkers were whispering. During the holidays I tend to avoid family gatherings that involve food unless they take place in the drowning commotion of a restaurant. Dr. David Scott, a clinical psychologist who treats people with misophonia, says this is not at all uncommon: “People with misophonia can get very angry with strangers. But the most extreme reaction is reserved for the people closest to them — their family.”
The film version of Revolutionary Road ends with Kathy Bates, a small-town realtor in suburban New York, telling her husband how much better she likes the new neighbors. The camera pushes in as Bates’ husband reaches into his pocket and turns down the volume on his hearing aids until Bates’ voice can no longer be heard. I have a similar fantasy, though I don’t wish to lose my hearing. Instead I dream of a future in which sound is as customizable as modern air-conditioning. Unlike the total silence of deafness, I am able to isolate noises I don’t like and turn them off, like an alarm signaling nothing. In this fantasy, my fiancée can eat all the ice cream she wants, without fear of censure or scorn. All I hear are the sounds I want to hear.
According to Dr. Jastreboff, there is hope. “There is a lot of misinformation in the media and press,” he told me. “It makes me unhappy that after all these years we still talk about misophonia as though it were incurable. That’s simply not true.”
Using a treatment known as Tinnitus Retraining Therapy (TRT), Jastreboff believes it is possible to reduce or even eliminate reactions to misophonic triggers. The treatment consists of counseling and sound exercises which aim to create a positive association with a variety of noises. The results, published by Dr. Jastreboff, report an 80% success rate.
It was incredibly reassuring to hear this. For those who can’t make the trip to the Jastreboffs’ Maryland-based clinic, there are organizations that offer support like the Misophonia Association and the Misophonia Institute, as well as the ongoing work of researchers and studies like those published in Current Biology. There are also many thoughtful websites and blogs (Misophonia International comes to mind) as well as Facebook groups and conferences which do an admirable job advocating for increased research. While not offering conclusions, these resources do offer some hope in the form of greater awareness. There is a feeling of being seen bit by bit, slowly — a gradual unsilencing.