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Here's What You Don't Know About Living With Misophonia

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Like a ghost, the memory of finger-tapping has become my own personal poltergeist. I feel jolted just as one would if the doors were slamming – if the lights were erratically going on and off.

I lie in bed and I replay each finger tap. I don’t want to think about it – but like bullets from a gun I replay every second. Bump. Bump. The ferocity echoes through my brain – the noise, god the noise – it’s just as loud as it was in person.

At 24 years old, I should be living every moment of my life to the fullest. I should be partying, making mistakes, and spending long wistful nights walking barefoot in the park. I should be kissing strangers in alleyways, because I’m young and mistakes are part of what makes life worth living. I should be drinking a little too much, and stumbling home just before the sun rises. I have a desire to do these things. I want to be young and careless. I want to go out for the night without prior planning, and I want to live my life to the fullest. Instead, I am trapped. I am locked into a world that is dictated by a disorder that suffocates my lust for life. Every decision is marred by its touch. I have gone to clubs, and I have had some fun, but I am increasingly losing my ability to be young and carefree. Instead, I am young and restless.

I have misophonia. While the internet is busy classifying us as strange, weird, or violent because of our disorder, the truth is a little more depressing. It is true that many of us are upset by chewing – but this disorder goes much further than frustration when our family members crunch down on potato chips. Many of us offer struggle from sensory problems similar to that of sensory processing disorder. This disorder is more than an aversion to sounds – it feels like an all-encompassing prison.

The strangest part is when there are no sounds, I am normal. It is as though the disorder has evaporated. I’m still myself. I will be going about my life like everybody else. I walk like a person that has never been troubled. Everything is fine. Until it isn’t.

Imagine for a second you are trapped in a cave with a dripping faucet. This faucet would continue, and eventually become torture. For those of us with misophonia, we are immediately trapped in the cave. Because of our amygdala, we do not get used to sounds. Instead, we are bombarded by a fight or flight response. We are constantly sick, anxious, and living in a world where our bodies are sensory taxed. Much deeper than simple anger, we are often isolated from our lives. There is no cure for misophonia, and increased exposure can make the disorder worse. Because of this, and the cycle of pain and anxiety, we are more likely to avoid unnecessary social events. Further than that, if I were to push myself too much, I am likely to end up with a severe migraine.

The normal life of a 24-year-old is something I’m not going to have. It’s taken some time to adjust to the idea that unless the research of the Misophonia and Emotion Regulation Program of Duke is successful, I may be living with this severe condition for much of my adult life. Truth be told, I’m terrified. The life of a young adult with misophonia is a confusing one. I have not been out or partied in over a year. Since social groups are often how we define our youth – I have had to find interests that are solitary. I haven’t been on a date in a year either. As the disorder worsens, my interests have been chipped away one by one – the memory of events, and the risk of them repeating have been the deciding factor in many of my activities.

If I were to go on a date, it would have to be something small and solitary. Movie theatres, due to the popcorn, leg-shaking and loud noises, are simply impossible. Restaurants also have chewing, and I generally avoid any situation where people are sitting down. Sitting in a car can be hard, if the person rests their arm on the window sill or taps their fingers on the car wheel. I cannot control my fight or flight reaction, and it is hard to explain to others why it is happening when there are little resources and awareness to point them to. I am exasperated as I try to explain that it is not them I am mad at, but the sound itself is causing my brain to go intro over-drive and short circuit. Sadly, it has become easier to not explain at all. So I simply stay home, and have more control over what’s going to happen.

A day for me usually begins with the night. During normal daytime hours there are honking horns, lawn-mowers, buzzing motors, screaming children, and persons that inevitably may show up at the door. Instead, I have opted for a life that takes place during the hours of 8 p.m. and 10 a.m. There are still noises, even in this sheltered life, even in a world that is considered rural compared to cities. No days are without triggers, and as these triggers mount, I become sick. After triggers, my muscles tense so tight that I have back pain, I become nauseated and dizzy. If I do not remove myself from the situation, these symptoms become worse. The longest migraine from misophonia that I have had was seven days long. When dealing with reactions this strong, avoidance becomes the main tool in your arsenal.

The world of misophonia and over-responsivity means that some clothes are too tight, lights are far too bright, and we are more likely to get migraines. Scent-related allergies are common, and perfume can quickly make us sick. Visuals can cause the fight or flight response too. Effectively, we are being threatened by every day occurrences at a level that can be hard to explain. I feel like we are also attacked by media that is convinced we are over-reacting or are a “think-piece.” After all, it is strange and unruly to think the regular world could be causing people so much distress. Unfortunately, I am here to tell you that this condition is very real.

The life of a young adult with misophonia is the life of a girl who was making As and Bs in university her first term – then, as triggers grew, attendance dropped. Eventually, to continue at all, I had to switch to online school. I became so suffocated by the triggers, that I could not hear what was going on in the classroom. To even survive the class, I would have to distract myself – and nothing was enough to distract from pen clicking, from legs shaking and other students that were simply trying to learn. For me, I was trying to survive. Like many other young adult experiences, the college life was another that I had to step back from. While I am still finishing my degree online, it is taking much longer. The social connection and wonderful memories that accompanied my first year, have been replaced by my bedroom and textbooks. While I love learning, there is a loss that has taken place.

Misophonia is not chewing rage, sound rage, or “murderous rage.” Misophonia is loneliness. It is the loss of social relationships and the decaying of what we could have been, or what we used to be.

Misophonia is a daily fight and struggle. We must remain hopeful despite every life change, despite the sickness and despite being trapped in fight or flight much of our days. Misophonia is resilience, because if we can survive this and still accomplish some of our goals, we have fought the toughest battles of all – the battle against our own brains.

I stay strong because I support the research at Duke. I believe the International Misophonia Research Network (IMRN) is working diligently to find solutions. I stay strong because I have to be, but I am not an ordinary young adult. The hardest battle I am fighting is against the life I perceived. Instead, I am cutting out a life that fits my needs. My life may not be that of an ordinary young adult, but that doesn’t mean I’m not going to have hope.

Originally published: May 4, 2018
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