“You’ve got to learn to deal, Sarah.” You’ve got to learn to deal with the people who treat you like your triggers are nothing and your sensitivities are meaningless. You’ve got to learn to quiet your pain; tame your expression. You’ve got to learn to deal with the real world.
The people who say they love and support me, they tell me this the most. Forgive me for getting so comfortable with you that I express my sensitivities. Forgive me for pronouncing the word “misophonia”. Forgive me for speaking the word between my too-many apologies.
According to the DSM, it does not exist. My pain does not exist. All that is real, all that is understood, is others’ annoyance.
It wouldn’t matter, anyway. A diagnosis means a cure, a way out. A lack of diagnosis means invalidation. There is no winning because I will still be silenced.
For me, a classroom is not a classroom. It is a minefield. It was a particularly ruthless minefield in high school, surrounded on all sides by teenage boys who liked to see me in pain. It is always boys.
It is always men; they are the ones who do not stop. Behind me a pen clicks and I turn around with begging eyes. The sound snaps my spine in two, jams itself between my temples; a drill, a saw, a chill. Nails on a chalkboard. I think unspeakable thoughts. I turn to them, eyes pleading, but whip around before they can make eye contact. A chuckle, bouncing off the walls. The clicking continues, increasing exponentially. I absently consider suicide as a viable option, the most logical means of escape. Instead, I hide in a bathroom stall.
I am sitting at my desk right now. The fan beside me is always on; a waste of electricity, a waste of space, blades moving quickly enough to create white noise. Down the hall at the computer sits my father.
He clears his throat periodically. I fight the unspeakable thoughts from my head. Now, I hear him ripping cardboard. I hear him slam the microwave door. I hear him chewing chips. I hear the clatter of ceramic dishes against the countertop. I beg some part of me I cannot control to make the thoughts disappear. I am also ready to disappear.
I am ready to lose my hearing forever. I am ready, please take me! I am done.
I’m annoying. I am an annoyance to anyone who has to live with me. I am unforgiving, and I understand that I do not deserve their empathy.
I learned that a long time ago. I understand that I have No Right to beg, first gently and then with force, that you stop biting your nails, stop chewing so loudly, stop whistling. The entire world is unsafe. The entire world is a risk, and I walk through it, sometimes stumbling, sometimes restoring to a crawl because that’s all I have.
My existence is asking too much, they are at the end of their ropes, and why, Sarah, are you asking for more?
How dare you ask for a favor when they do so much for you? How dare you need their help, isn’t their refraining from whistling, clicking, biting…isn’t that enough?
You ungrateful bitch.
If I have learned one thing from living with misophonia, it is this:
“Loved Ones” (let’s call them that for convenience’s sake) will say they will do anything for you. They will say that they will never get sick and tired of your annoying existence. And they are lying. I have seen their lies, I have caught them in the act, I have held them to their empty promises and I have been disappointed.
I have learned: Their convenience means more than my ability to function.
I have learned: The “real world” will never be safe.
I have learned: I am fundamentally unworthy of others’ consideration, compassion, and accommodation.
And now I am stuck. I am halfway between fighting for my right to accommodation, and believing myself unworthy of any support at all. Self-hatred mixes with righteous anger. Lately, there has been a wholly patronizing trend of positivity posts cropping up everywhere. Oftentimes, as most patronizing forms of “support” are, they are directed at disabled people.
They say, “You are worthy of love and support” and I ask, “have you ever lived with me?”
They say, “Your existence is never a burden” and I exclaim, “let me prove you wrong!”
I would love to be empowered by these posts. I know they’re well-meant, often written by disabled people themselves. I can’t help assuming that the writers would eat their words if they ever had to deal with me. After all, is it not they who say “don’t police my movements” and “don’t police my sounds”? Honey, I do both. I’m your evil, annoying, burdensome mentally ill person.
When I tell others about my misophonia, I already know how the conversation is going to go. It goes like this:
Me: “I have misophonia: (defines misophonia)”
Them: “OMGGGGG, I am SO sorry. I must bother your disorder SOOoOoOO
much!! OMG!...So, like, what are your Bad Sounds? I’ll try SOoOooO hard
not to make them!!”
Me: “Well, they are: (lists them)”
Them: “Okay!!! I will NEVER do those again around you!!!! SoooOOOO sorry, again!!!”
I no longer allow myself the privilege of believing that they will keep their word. They never do. I tell them this, and when I gently remind them of what they are doing, they snap at my rudeness. They distance themselves from me. They stop speaking to me for a while. I lose friendships. I damage relationships. My fault, my fault, my most grievous fault. Why couldn’t you just keep your mouth shut, Sarah?
The more I care about someone, the worse their sounds and movements become for me. I’m unsure as to how, exactly, my brain devised that specific form of torture. But oh, does it work.
Lately I have been trying to remain firmly on my grandparents’ good side. Be the perfect grandchild. They helped pay my private high school tuition for four years; they have taken me on vacations, have spent countless thousands of dollars on my pleasure and happiness. They have given up so much for me, it is difficult to quantify. They helped to raise me while both of my parents worked and I was too young to be home alone. I cherish and respect my grandparents. I love them dearly.
Rarely am I able to see them anymore, now that I’m a college student.
So, they engage me in conversation at holiday dinners. They want me to come over during breaks. My grandfather hacks and spits mucus in the bathroom, and I can hear it. He speaks loudly and I can hardly bear it. My father laughs raucously with my grandmother as they cook together. Dishes clang. I sprint to my room; the teal-painted guest room at the end of the hall. I am shaking, hands over my ears. I scream with my mouth shut to shut out the sound, praying that they do not hear from the family room.
I am ashamed. They have done all this for you, Sarah, and you can’t even be gracious to them.
Since I got my driver’s license, I have left almost every holiday meal early. I am ashamed. They miss me. I see the hurt in their faces when I attempt a speedy exit from their hot, loud home. I hurt too.
Walking through life with misophonia is walking past dozens of chalkboards every day, each with nails poised above it. Knowing for sure that the nails will scrape across its blackness, screeching deep within your bones, knowing you must not react or risk your carefully curated friendships. Planning escape routes if the noise gets too bad.
Making excuses for people you can’t or won’t share your truth with.
I have spent years not allowed to enjoy a moment; instead looking for places to flee.
For every instance in which I timidly ask, “Could you please not do that?” There are ten more that have built up and shook me to the core and fuzzed my brain beyond recognition, and through those ten I have remained silent. That is how I survive. My existence is a series of compromises, swift decisions and fear of speaking up.
It does not matter to you. It will never have to.
I have swallowed my pain before and I will swallow more. It does not matter how much I let pass. How often I close my mouth and flee instead of asking for accommodations. I know this now, I know I am simply your burden. I am aware that I am annoying, that I am impossible to live with, that I need to learn how to shut up and face the real world.
I understand now. You, you outsider, you nail-biter, you whistler, your lot in life says: “You do not have to learn to deal, you may carry on doing as you please, and fuck anyone who gets in your way.”
And me, I’ll be here. I’ll sit in silence, you never have to notice.
The pain doesn’t matter, Sarah.
Sarah Cavar is an eighteen-year-old undergraduate at Mount Holyoke College. They are living at the intersection of genderlessness, queerness, and mental illness/neurodivergency. They study Critical Social Thought and Mandarin Chinese, and writing has been a lifelong passion for them. At any given moment, you’ll probably find them with a cup of coffee and a book.