Invisible knife: Living with misophonia

Misophonia is a neurological disorder in which certain sounds trigger the body’s fight-or-flight response.

Imagine sitting down for breakfast with your parents. Your mother mutters a prayer under her breath, a barely audible chant she’s whispered for decades. Her mouth performs a choreographed dance, and you look away. The television buzzes in the background, utensils clink on ceramic, and yet you hear her prayer with startling clarity. Any other ear would find her whisper quickly fading into the background static of a family breakfast, but you find your mother’s prayer unbearable.

You want to scream, to run, to take your fork and stab your eardrums. Just when you think the morning can’t get any worse, your father sips his tea. He ends his sip with a satisfied aah. In between sipping, he chews his breakfast. You hear the stretch and squeeze of each bite, the soft stickiness of saliva against his palette. It grates your mind. Goosepimples cover your skin. But you pretend like everything is okay, because chewing food and sipping tea and whispering prayers are part of your daily routine. Except you can’t pretend, because your body refuses to cooperate.

The only reaction you can muster is to cry. Your parents ask you what’s wrong. You can’t tell them that they are wrong, that everything is wrong, so you run into the room you share with your brother, push a pillow against your ears, and for a few moments, you live in a soundless world. One without prayer or chewing or satisfied aahs. You are eight.

You wake up at night. Papa is on the phone with a travel agent, planning a family trip across the world. Every time he articulates the k in Osaka, your insides turn. Some times, you are able to leave the sounds that make you feel this way, but this is not one of those times. You’re stuck with Osaka. Osaka. O. S. A. K. A. You bang your head on the wall. You cry. You pinch yourself. Your brother asks you if you’re okay. You scream and cry some more, yelling at Papa to stop talking, stop talking, please stop talking, but he’s not going to stop. He’s planning a family trip. Tomorrow, someone will ask you why you threw a tantrum, and you will tell them nothing. Sounds are a part of life. How does one stop living? One can’t stop. One must live. You are eleven.

You discover you aren’t the only one living this way. Your behaviour — our behaviour — has a name. Misophonia. Literally, a ‘hatred of sound.’ Misophonia is a neurological disorder in which certain sounds trigger the body’s fight-or-flight response. It usually starts at an early age, with family members. Triggers differ from person to person. That it has a name, that you aren’t alone, this is the good news. That there is hardly any research on misophonia, that no treatment exists, this is the bad news. Researchers coined the term in the year 2000, but that was fifteen years ago. You are twenty-nine.

Your parents take the news well. When you tell them about misophonia, they say okay. Maybe they don’t grasp the gravity of the condition, because you’ve been living away from them for the past seven years. Maybe they’ve forgotten the tantrums, the stop talking Osaka, and the restroom joke, which you will remember soon. You’re surprised at how well they’ve taken it. You expected something along the lines of oh, well now that explains a lot. Maybe you expected a hug. Or maybe you just expected something with curiosity, something other than okay. Maybe okay makes sense, though. They no longer face, on a daily basis, your outbursts, your tuning out, your walking away mid-conversation, your earplugs. All of that you reserve for your partner.

What do you mean my singing irritates you? He loves to sing, but now he has to think twice. You can’t stand how he types on the keyboard. Or the way his fingers drum the hollows between his knuckles. His whispering, but only when it sounds like a barely audible prayer. The gentleness of his k’s and t’s. You don’t want any of this to happen. It just does, without warning, like a line of switches in front of a child’s restless fingers. Each trigger is cumulative, one pain adding to the next, and the pressure continues to build until you snap or he snaps or you both snap, in which case there will be a palpable explosion, and then there will be many tears. You blame yourself. You are thirty-two.

You tell yourself many things. That you are sabotaging a perfectly healthy relationship. That this is some subconscious you-don’t-deserve-happiness, some self-victimising trip you’re on. You want misophonia to go away, but it isn’t going anywhere. You fear that your partner and your parents will try to understand, but never really will. You fear it will touch other people if you care about them enough, like a love disease, so you try not to care.

Illustration of a person’s face, their head turned to the side, eyes closed. The background is brown with polka dots.

Credit: Minjung Gang via Flickr CC BY-NC-ND 2.0.

You remember what misophonia does.

Your partner is on the phone with your mother, and you plug your ears, because it’s happening. You speak to Ma next — briefly, because it’s starting to happen with her too — and then you offer him the phone. He refuses.

Tell her.

Tell her what?

Tell her you’re having miso.

You sigh into the phone, feeling like you’ve committed a mistake. Ma. He can’t talk because I’m having miso.

Ma is silent for a few seconds. You know how she’s blinking. Can’t you make it stop?

No words exist to describe how badly you wish you could make it stop. Maybe, Ma thinks you are making it up. Maybe she thinks it’s a cry for attention. Maybe this is what okay means.

You remember what misophonia does.

You are traveling in India with your parents. Papa has a cold, which makes his laboured breathing an easy trigger. When he speaks, you tell him his voice is irritating you (it’s misophonia, you want to say, but you don’t want to scare him with medical labels). He speaks again, you tell him again. This happens a few more times throughout the day, until he snaps. What do you want? Should I stop breathing? His voice trembles. And you think to yourself, what kind of daughter tells her father to stop breathing?

Irritation isn’t the right word. A knife stabs you, again and again. The knife isn’t aware that it’s stabbing. You’re the only one who sees the stabbing. The knife is someone you love dearly. So not irritation, but a stabbing by an invisible but loved knife. Whatever you call it, you try to push it out.

You remember the restroom joke. As a child, you liked hiding in bathrooms, because they kept the bad sounds out. You flushed constantly. Papa used to joke about it (a joke understood only by your parents, your brother, and yourself). The frequency with which you visit restrooms makes them, Papa said, a room for rest. A place of peace. But you knew then what you know now: there will never be any peace.

There are sounds that are painful, and they don’t become less painful over time. But there are also sounds that are beautiful. The crackle of crisp autumn leaves under your walking feet. The whir of a properly installed ceiling fan. David Attenborough’s voice. These sounds give you goose pimples, but in a happy way. These sounds are balm to your ears, or rather, to the auditory processing system in your brain. You wish everything sounded like David Attenborough’s voice, but in spirit. For now, you simply try to understand this condition you’re waking up to everyday. You join a support group. You are thirty-three.

Pragya Bhagat is a spoken word poet and writer. She is the author of More Than a Memory, a poetry collection, and Yarn: An Interwoven Memoir. She currently lives in the hills of Kumaon.


Featured image credit: Upasana Agarwal