For People with Misophonia, Everyday Noises Can Be Agony
Edgar Allan Poe’s story “The Tell-Tale Heart” was inspired by a shocking crime with a predictable motive. On the morning of April 7, 1830, in Salem, Massachusetts, Captain Joseph White, aged eighty-two, was found in his bed, bludgeoned and stabbed in the heart. Two distant relatives of White’s, a pair of brothers, had stolen White’s will and hired a hit man to kill him. The hit man then hanged himself after he was apprehended. (It was during the brothers’ trial that the prosecutor, Daniel Webster, uttered the infamous words “murder will out.”) In Poe’s gothic retelling, our murderer’s motivation is as murky as the cataract in the victim’s eye. There are no obvious justifications, financial or otherwise. After dispatching his elderly neighbor, the speaker gives himself up to the police, who he’s convinced are pretending not to hear the source of his torment, the incessant beating of the dead man’s heart—a “low, dull, quick sound.” For most readers, “The Tell-Tale Heart” is a story of madness and guilt. For someone with misophonia, it’s a story of restraint. Our triggered hero makes it through a whole interrogation before he starts ripping up the floorboards.
Misophonia is a neurophysiological disorder broadly characterized by two things: a severe aversion to sound and a struggle to convince others of the severity of that aversion. Nameless until the start of this century, when the husband-and-wife neuroscientists Pawel and Margaret Jastreboff coined the term, the condition has become exponentially better known in recent years. In 2024, a study led by the University of Mississippi estimated that 4.6 per cent of U.S. adults met the criteria for misophonia. Loop, a manufacturer of earplugs, markets a range of options to consumers with the condition. The International Misophonia Foundation, a nonprofit, sells six different shades of a “shh . . . I have misophonia” phone case. SoQuiet, another misophonia nonprofit, has forty-four apparel options that transmit a similar message.
Subclinical or mild misophonia is so common that there are myriad Reddit threads populated by amateur sufferers, many of whom could not sit through Dennis Quaid slurping shrimp in “The Substance” but feel a parasocial connection to Daniel Day-Lewis’s sonically fussy character in “Phantom Thread.” They, too, wince at the sound of breakfast being consumed. Others can’t stand the sound of gulping. Still others would like to chuck lozenges at phlegmy strangers. One of the problems with the condition is that it overlaps with the human condition. During colonial times, people audibly churned butter and spun flax with a heavy foot. Marcel Proust is not on Reddit, but he did once write a letter to his neighbor, in which he asked her if it would be possible “either to nail the crates this evening, or else not to nail them tomorrow until starting at 4 or 5 o’clock in the afternoon.”
Today, in a time with the loosest definition of trauma of any period in history, it can be especially difficult to parse personality from pathology. Who among us has not experienced an inability to ignore repetitive tapping, clicking, chewing, smacking, and sniffling? Who among us has not lain awake, our consciousness pinched to attention by the nefarious silences between snores, with our earplugs like fallen soldiers on the battlefield of sanity? Who among us has not asked herself: how many potato chips could possibly be in one bag?
What differentiates misophonia from simply being alive is that it’s not just about sound. It’s about how certain brains process that sound. Poe’s narrator insists that “what you mistake for madness is but over-acuteness of the senses.” Fiction may demand a macabre deference to this princess and his milky-eyed pea, but people living with misophonia are not defined by heightened auditory perception. Nor do they necessarily have hyperacusis (decreased tolerance to sound volume). Nor are they abnormally attuned to the acoustic properties of sound. Instead, they share a dysregulating visceral response, a cognitive and physiological—chest-tightening, heart-racing, sweating—spiral of alertness and exhaustion more commonly known as “fight or flight.”
The clinical psychologist Jane Gregory, in her jaunty book, “Sounds Like Misophonia,” affectionately refers to this segment of the population as “meerkats.” The internet may be full of people who want to outlaw leaf blowers, but misophonic triggers tend to share a bodily quality, an aurally traceable culprit such as a person crunching or sighing. A threat from one creature to another. The cerebral circuitry of the human brain—specifically the salience network, which is responsible for filtering stimuli—seems to be more active in individuals with misophonia. Cognitive-behavioral therapy (C.B.T.) can help with this, just as it can with other disorders that have a sensory-processing component, such as A.D.H.D. or P.T.S.D. But there is no pill for misophonia and no such thing as exposure therapy for instinct. The afflicted are left with a medical-grade inability to just suck it up and, for now, no officially recognized diagnosis.
I belong to a profession to which one can attribute a need for silence. Joan Didion, in her memoir “Blue Nights,” transcribes her daughter’s list of “Mom’s sayings”: “Brush your teeth, brush your hair, shush I’m working.” If you’re a Didion fetishist, this intolerance for disruption might be considered a feature, not a bug. For my part, I’ve always been envious of writers who can focus despite unwelcome sounds, who do not feel betrayed by their ears when they catch the bass of a television speaker. Writers who do not assign blame to noise. I can tell when my carpet-phobic neighbors are wearing heels or boots and remain in awe of their dedication to transferring dirt from the outside of their apartment to the inside of their apartment.
While I have long suspected that I have some degree of misophonia, to live in New York City is to live at a diagnostic impasse, as with many other afflictions. Are you depressed, or have you spent too much time inside that dark studio that you can’t afford? Is it perimenopause, or should you not be sleeping next to a heating pipe? Is it that sensory-processing disorder you read about, or is it the 8.5 million people with whom you share your city?
In January, the Duke Center for Misophonia and Emotion Regulation hosted a webinar, led by Zach Rosenthal, a professor and a clinical psychologist who would love to see misophonia released from medical purgatory. Rosenthal founded the center, part of the Duke University School of Medicine, in 2018; in addition to misophonia, he and his team also study misokinesia, a condition that was first named in a 2013 study by the Dutch psychiatrist Arjan Schröder. Misokinesia is an aversion to movements in the absence of sound. Very rarely, it can present in isolation, but, like misophonia itself, it’s usually a problem within a problem: if the sound of sipping bothers you, the sight of it likely does, too.
The webinar’s attendees were a mix of researchers, patients, and the parents of children who are grappling with misophonia. As the session began, a message popped up onscreen, directed from one attendee to another: “Lisa M. please stop chewing or turn off camera, thanks.” Everyone was already on mute. Still, to engage in a trigger-associated movement was a bold choice. Chewing gum on a misophonia Zoom is like bringing a knife to a balloon flight.
Rosenthal structures misophonic symptoms according to the acronym BASIC: behavioral (escape and avoidance), attentional (vigilance and distractibility), somatic (physical hyperarousal), interpersonal (inhibition, indirect aggression), and cognitive, which can be “sliced into internalizing cognitions versus externalizing cognitions,” he told me. “Either it’s my fault—I’m bad, I’m broken, I’m terrible. Shame, shame, shame. Or it’s your fault—you’re bad, you’re terrible. Anger, anger, anger.” When we spoke after the webinar, he was quick to point out that there is no “E” in BASIC. Thrown by the simplicity of this pronouncement, I took a moment to scan the word. His story checked out. But I wondered why he was so adamant about keeping “E,” as in “emotion,” off his list of symptoms when a feature of misophonia is an emotional response.
“Because emotion is not simply one thing,” he explained to me. “It occurs across all the letters. It includes behavior. When we get angry, we have strong underlying biological responses, full stop. You can’t divorce emotion from biology.”
I had not planned on divorcing anything from anything, but Rosenthal is accustomed to the world’s tendency to pigeonhole misophonia, to paint the condition as a manufactured malady and those who live with it as hysterics.
“This is a phenomenon that does not fit into any one clinical discipline, but people want to stick baby in a corner,” he added.
During the webinar, Rosenthal noted an accomplishment of the previous year: the establishment of a World Misophonia Awareness Day, on July 9th, in memory of Michelle Del Valle, a teen-ager from Orlando who died by suicide in 2023, after struggling with misophonia. In addition to the center’s evergreen goal of raising awareness, Rosenthal is hoping that 2026 will be the year that misophonia is finally recognized with a code by the International Statistical Classification of Diseases and Related Health Problems, or I.C.D. Developed by the World Health Organization, the I.C.D. is a global concern, separate from the Diagnostic and Statistical Manual of Mental Disorders, or DSM, a U.S. publication that classifies psychiatric conditions. The DSM is more widely known in the States, and sometimes deployed as a barb (i.e., “So-and-So should have their own entry in the DSM”). Misophonia might appear in the DSM eventually, but, for now, the focus of the misophonia community is the I.C.D., which is used by pediatricians and primary-care doctors. Rosenthal submitted the proposal arguing for its inclusion.
Misophonia is often diagnosed alongside anxiety, A.D.H.D., and O.C.D., which do have official diagnoses. But, Rosenthal said, “If misophonia is the only diagnosis people meet criteria for, it will enable them to receive treatment with it as the sole diagnosis. If it’s in the I.C.D., it becomes an option in the medical industry’s drop-down menus. It becomes a real thing.”
Lucia Lara, an occupational therapist in Seattle who focusses on pediatric sensory-processing disorders—she recently treated an eighth grader who had to contend with a class science experiment involving bouncing Ping-Pong balls—echoes Rosenthal’s beliefs: the code won’t alter what she does, she stressed, but, when it comes to health insurance, “those codes are important to facilitating the reimbursement process.”
For Jen Dotur, a mental-health counsellor in Alaska whose husband and eldest daughter both have misophonia, an I.C.D. entry is symbolic as well as practical. “It validates that misophonia takes up a real part of people’s lives,” she said. “I think when something isn’t coded, it almost feels like it’s invisible.”
The W.H.O. does not comment on the status of proposals beyond confirming that, indeed, a proposal is under review. But even among those who acknowledge misophonia as an identifiable condition, there is not unanimous support for its inclusion in either the I.C.D. or the DSM. Steven Taylor, a clinical psychologist and a professor at the University of British Columbia who specializes in anxiety disorders, told me that misophonia “doesn’t fit neatly in either the psychiatric or audiological realm,” which makes it all the more challenging to classify it in an official capacity.
“There’s still a lot that needs to be learned,” he told me, “and I think it’s premature to stick it in the I.C.D. at this point. I would like to see a little more consensus in the field about what this disorder actually is. Do we put it in an audiological coding manual? Do we put it in a psychiatric manual? Do we put it somewhere else?”
Elizabeth Levine, a twenty-two-year-old pharmacology student at the University of Connecticut, remembers the day that she became aware of her misophonia. So does her twin sister, because they experienced their first trigger “at the same time, the same moment,” Levine told me. The twins were twelve years old and riding in a car with their father when he began tapping his fingers on the dashboard. Levine tried to ignore it, but eventually she couldn’t take it anymore and complained. Her sister followed suit. (According to Rosenthal, there is, as yet, no obvious genetic cause of misophonia, but it can run in families.) A short while later, both girls found themselves so bothered by the sound of their father’s eating that they left the house. “Evidently, we both just walked out and closed the door,” Levine said.
At first, the twins’ parents hoped the girls would get over it—their avoidance was hurting their father’s feelings—but, luckily, they each received an early diagnosis. Levine, who has also been diagnosed with O.C.D., categorizes her symptoms as “through-the-roof severe,” especially compared with her sister, who has a milder case and whose triggers tend to be generated by their mother and, in a croquet-like turn, Levine herself. Levine’s reaction to a triggering sound is instant: “As soon as I hear it, the response is activated. Like, danger, you know? I feel incredible agitation. Basically, I’m holding my breath. I need to tell someone to stop it right away or bolt out of the room. I guess it’s intense rage and panic. It’s kind of hard to compare it to something.”
Levine has tried C.B.T., talk therapy, E.M.D.R. (eye-movement desensitization and reprocessing), and SSRIs to treat her misophonia. She no longer goes to restaurants because it’s “borderline insanity” with all the clicking and scraping. Cafeterias are better because the noise tends to be more background in nature. She and her sister, also a student, live at home, where the utensil franca is plastic. She eats dinner alone in her room. Libraries are not so great because of the way sound carries, coupled with visual stimuli. In class, she wears both noise-cancelling headphones and hearing aids that pick up sound from a microphone on her professor’s desk so that she can listen to lectures.
According to Jen Dotur, Levine’s scenario, where “a group of people are shifting an entire system around one person,” is not uncommon for severe cases. This can often lead to resentment, though Levine’s immediate family has been understanding, she told me. But sometimes she has to explain herself to strangers or classmates.
“It’s really confusing to them,” she said. “I say I have hearing issues. I can’t tell them I have misophonia, because no one knows what that is. They don’t get it. ‘My eating bothers you?’ ”
“I’m never able to fully just be present,” she said, sighing, “I can’t just walk into places and be excited or happy. It’s done a number on my over-all mood.”
“It’s like nails on a chalkboard,” a fortysomething special-education teacher with misophonia told me. “That’s what it feels like, a thousand times a day. Every time, it’s brand new, you never unlearn it. Maybe a thousand times a day is an exaggeration—a couple hundred.” These moments are followed, the teacher said, by feelings of guilt and shame: “What’s wrong with me? Why can’t I be better?” The teacher—I’ll call him Nick Blackburn—has never divulged his condition to his employer.
Blackburn’s misophonia was a factor in his recent divorce; he tried to “preserve the nature of the marriage and sleep in the same bed,” he said, but he couldn’t. He has slightly more control in the classroom, particularly when he can tuck some helpful strictures under the blanket of test-taking etiquette (no chewing gum, no crinkling of water bottles). Blackburn acknowledges the irony of devoting his life to people with special needs while masking his own, but, he said, “the fear of being let go” wins out.
“I have a very meaningful job,” he continued. “I take pride in that. So I try my damnedest to be as functional as possible. I think it gives me a purpose.”
Blackburn’s misophonia manifests mostly as avoidance. It’s a struggle that’s only increased after he was recently moved into a shared office space. He steers clear of group situations with his colleagues, for example, and uses headphones, he said, “to isolate myself, essentially.” If he spots someone chewing gum in a car next to him during his commute, he stares straight ahead.
In a way, Blackburn is the poster child for an I.C.D. code (even if he would never appear on the poster). He shares two young children with his ex-wife, and his kids try to give him a heads-up if they’re going to “do a big sniff.” A warning takes the edge off the trigger.
“I have brought misophonia up with medical professionals, who say it’s not in the books: ‘There’s nothing we can do. You’re making it up,’ ” he told me. “Or they try to prescribe medications to deal with the symptoms instead of the cause. So I was paying co-pays and deductibles to educate these people, and, since I could hear clearly, an audiologist wouldn’t provide the right documentation to get ear devices covered. The insurance companies were, like, No, but you can hear.”
But what if he couldn’t? Or, rather, what if he could pick and choose? Shyam Gollakota, a Seattle-based co-founder of multiple startups, leads the Mobile Intelligence Lab at the University of Washington. He specializes in what could be called tiny tech, such as sensors he developed, in 2020, that helped combat an infestation of murder hornets in Washington State by enabling the tracking of the invasive creatures to their nests. In 2023, he co-authored a paper on what he dubbed “semantic hearing,” or “a novel capability for hearable devices that enables them to, in real-time, focus on, or ignore, specific sounds from real-world environments.” Gollakota was inspired by a lifelong sensitivity to noise and, more specifically, visits to his parents’ house in India. Every time he’s there, he becomes overwhelmed by the sounds of cars honking and dogs barking. “I’m, like, How are you people able to sleep?” he told me.
The paper caught the attention of Zach Rosenthal, at Duke, and their collaboration led to Gollakota’s receiving a grant from a charitable foundation, the Misophonia Research Fund, to “enhance noise-canceling headphones that selectively remove triggering sounds.” Instead of designing headphones that allow users to toggle between degrees of sound transparency, an option that Gollakota considers limited, he and his team are using machine learning to develop headphones that augment auditory perception and can quickly target and eliminate irksome audio—an enticing notion for anyone with a short fuse. Gollakota is partial to the scenario of someone sitting on a bench, listening to chirping birds, and being intruded upon by loud talkers. Leave the birdsong, take the chatter.
In addition, his system can create “bubbles” that filter sound by proximity. If you’re standing in line and the person behind you is talking more loudly than the person you’re with, the more distant person, Gallokota said enthusiastically, can be “completely removed.”
Those living with misophonia aside, I wonder if people should be able to do this. The mere suggestion of isolating and extracting the thud of my neighbor’s footfalls is a dream that dare not speak its name, but should we be able to tailor our immediate environments more than we already do? So much of today’s technology is built for self-siloing. Should we be handed another gadget that could handicap our social skills? Gollakota smiled and brought up G.P.S. Would I deprive myself of G.P.S.? No, I would not.
Besides, given the nuanced nature of misophonia, technology is not likely to be a magic A.I. wand. Nick Blackburn maintains skepticism about new tools. The hope that “this is going to solve all my problems” can be poisonous, he told me, because some trigger always makes it past the headphones. And his ears can’t protect his eyes from sound-associated movements. Plus, the promise of selective silence puts someone with misophonia in a heightened state of anticipation. Imagine the broken contract of a train’s “quiet car.” Now add physical torment. It’s why Elizabeth Levine finds libraries so troublesome.
By and large, people with acute misophonia want to flee the source of their torture, not attack it. Anger does not necessitate assault. Yet the association with rage may be misophonia’s fastest-growing stigma, especially among those who don’t have it. This emphasis on Hulk-smash hostility could be viewed as an effort on the part of the general population to differentiate misophonia from better-known disorders (as a rule, one can aggravate a person with A.D.H.D. without ducking). But sometimes this connection is propagated within the community itself to make a salient point about a complex condition.
One recently self-diagnosed friend told me that he can no longer dine with his nonagenarian father without wanting to “rip his face off.” Even SoQuiet sells a “misophonia death glare” shirt, featuring a cat with rainbow laser beams shooting out of its eyes. In December, the actress January Jones took to Instagram to film herself hiding from her chip-chomping brother-in-law. She confessed to a lifelong struggle with misophonia and deemed his behavior “very dangerous” (“What I didn’t do today was record this video inside a prison.”) Her irritation is palpable, and the video is tongue-in-cheek, so to speak, but it’s also illustrative of the sort of syndrome fetishization that goes on in certain coastal cities.
“Once a clinical condition becomes widely known,” U.B.C.’s Steven Taylor told me, “people will tend to self-diagnose or over-diagnose. Self-awareness is important but if you over-diagnose misophonia, including the more minor symptoms, you run the risk of trivializing the condition.”
Levine has observed an uptick in stolen valor: “When people say they have misophonia, like, ‘Oh, I have that too . . .’ No, you don’t. My misophonia is an actual, severe, life-altering condition, 24/7, since I was twelve.”
I nodded along but wondered what she would make of me, a person who would prefer to never again hear someone eat an apple. (There’s a scene in the 1991 film “Sleeping with the Enemy,” during which an actress chooses to make open-mouth gnashing part of her character, and it chills me just to refer to it.) “Prefer” is not part of Levine’s vocabulary. But Rosenthal allows for a more generous definition of impairment: “If you think of misophonia as a disease that you either have or don’t, and there is no in-between, you come up with a really different answer than if you think about it the way I think it actually is, which is more of a dimensional spectrum.”
Alas, we do not live in a clinical trial. So it’s easy to understand Levine’s hard line regarding who does and does not have an affliction that’s altered her life. We live in a culture of story-usurpers and one-uppers, of empathy expressed through mirror experiences, if expressed at all. It’s a tough spot to be in for people with misophonia, to have a problem that’s both widely claimed and widely dismissed. If the goal is to raise awareness, the best course of action is probably to let the subclinical cases be counted. But how can this not dilute the credit for the suffering of those who have to contend with severe misophonia? Why should they cede the field to the junior-varsity team?
As a self-identifying member of the J.V. team who has never sought professional help (not for misophonia, at least), I have come to believe that grating noises land in whatever part of my brain is responsible for processing judgment. Probably all of it. But my lowest tolerance has always been for movement: the sight of someone rapidly shaking their leg results in a blazing, uncategorizable feeling akin to revulsion, and nothing can stop it, not even the sure knowledge that glaring is a sign of age.
I have tried to outsmart it. I’ve been known to leave movie theatres packed with visible fidgeters and pace in the lobby until I’m ready to go back in and try again—a slightly more challenging prospect on an airplane. Recently, I went to a restaurant with a friend who was telling me about her breakup. She had her chair pulled snug against the table; I was seated in a banquette, flush to the wall. A few tables down, a fellow-diner vibrated our shared piece of furniture, jiggling his legs as if he’d forgotten all about them. Which he probably had, since leg-shaking is often subconscious. I made my friend switch seats with me so that I could listen to what she was saying.
SoQuiet offers distributable cards for people with misophonia and misokinesia, so that they can explain their situation to strangers. This form of self-advocacy may work for some, but such a card strikes me as a wild thing to have in one’s possession—forget showing people that you have it. Nick Blackburn agrees: “You hand somebody a card and the fear is ‘Go fuck yourself.’ ” But my deeper issue is what’s printed on the card: “You are doing nothing wrong.”
The fallacy of any annoyance is that it robs you of something positive, that you were bopping merrily along when the beeping began. More often, it robs you of the right to worry about what you find worrisome. It chooses for you. Man-made irritation, in particular, poses a question: Do other people have anything to do with me, or not? Are we living on a shared planet that requires baseline acceptance of one another’s corporeal being, or are we not? Buddhists, socialists, and epidemiologists would say yes. As would I, in the abstract. But when presented with a shaking appendage, my answer is no. No, that person has nothing to do with me. At which point, I’m tempted to smack the leg of a stranger so hard that their mama will feel it.
“But it’s not the other person’s fault,” Rosenthal told me when I asked him about this. “They are just breathing. They’re just eating their food normally. They’re not doing anything actually wrong in any sense of the term, morally, ethically, legally.”
“Counterpoint,” I offered. “They are.”
My righteous belief in fault, not hostile but negligent, is a telltale sign that, to whatever extent I have misophonia, it’s manageable. When you find yourself on the business end of this spectrum, fault is the least of your concerns. People living with severe misophonia want to change themselves before they want to change anyone else. As for misokinesia, I don’t associate leg-shaking with the sound it makes. According to Rosenthal, this means I might have to find a different scapegoat for my outsized reaction. He gave me the parallel example of hair-twirling, a habit that many people find “anywhere from annoying to extremely aversive,” but which does not fall under the banner of misophonia.
As a mind-set, fault “doesn’t even pop up” for Levine. Blackburn, too, is hesitant to “force people to adjust how they are because of me.” He asked, “What are we going to do? Put signs up in every doctor’s office that say ‘If you have to cough, leave the room’? I mean, that seems absurd.”
Perhaps the gene I should be searching for in myself is not one that lends itself to misophonia but one that lends itself to grace. Every once in a while, Blackburn will come across a student who is exhibiting signs of misophonia. He is faced with a dilemma. The parents of the student will “very reluctantly” approach him about their child’s troubling reactions to everyday sounds, because, as the child’s teacher, he is the person they’d approach. But they don’t know what they’re approaching him with. Under normal circumstances, Blackburn is hesitant to give himself away. But, in such situations, he feels obligated to share his story. He recalled one afternoon in which he found himself sitting across from a pair of parents after school as they all cried with relief, together.
“They thought, Wow, you’re a functioning adult. There’s hope for my child,” he said. “But, more importantly, I then connected with the kid. Because we really do feel like we’re alone in this.” ♦