The Deeply Isolating Life of a Misophone
For nearly thirty years I have suffered from a neurological disorder called misophonia, and it’s caused me crippling frustration and hopelessness. This has only gotten worse over time and it’s become incredibly difficult to function in society, from holding a job, to seeking medical help, and even meeting friends or socializing. I am a natural extrovert who enjoys good company, deep conversations over tea, but I have had a progressively hermit-like existence thanks to misophonia.
Misophonia, (not to be confused with mysophobia, the fear of germs), was named in 2001 and gives terminology to a unique disorder wherein sufferers like me experience a severe panic or anger reaction in response to fairly normal, non-threatening noises such as eating sounds (chip crunching, gum smacking, soup slurping, belching), pen clicking, toe tapping or finger drumming, snoring, yawning, sniffling, etc. The list is unique to each misophone, the accepted term for sufferers. Many misophones also develop visual catalysts in time. Seeing someone chewing gum, even if I can not hear them, is a real problem for me.
The reaction I have to, say, gum smacking or pen clicking, is visceral. It’s like an instant anxiety attack with an element of anger, rage, or fear. I immediately hate the person smacking the gum and look for a rapid exit. This happens daily. My heart rate increases, I become irrationally agitated, and I seek refuge. Without hyperbole, I can honestly tell you that if I were given the option to listen to someone smack their gum for 5 minutes or have sewing needles shoved under my fingernails, I’d be hard-pressed to decide. I’d most likely pick the needles.
Before there was a term or an acknowledgment that it was a real medical problem, I was just the weird kid who couldn’t eat dinner with his family, who was painfully bothered by my father’s nail biting. Maybe I was just eccentric. I didn’t have the tools, the awareness, the power to communicate what I was experiencing. It was more than just mere annoyance, but what was it? This was the early stages of my being viewed as a weirdo.
Activating sounds (I avoid the word “trigger” because it has become a punchline in common conversation) are not simply unpleasant noises. Alarms are designed to be annoying, but they do not presently cause a misophonic reaction in me. Plastic wrap crinkling and whistling do. My experience proves⸺and research confirms⸺that misophonia gets worse with age as new sounds get involuntarily added to one’s bank of activators. A recent move to Colorado caused me to discover a new and major instigating noise: carabiner clicking. I was in line at the Denver Aquarium and a friend had a climbing carabiner on his keychain that he clicked repeatedly as a nervous habit. I nearly lost my mind in an instant.
Here are some common activities you probably do regularly without thought that I am unable to do: Seeing a movie in a theater; the popcorn prevents this. Having dinner with my family hasn’t happened in decades; I’ve eaten thousands of meals alone in my bedroom. Working any kind of job in the food-services industry. I recently tried to work part-time at a café, but the constant sounds of eating and gum smacking drove me to debilitating madness and I came incredibly close to ruining months of solid sobriety. Even shopping at my local Ace Hardware is impossible because, inexplicably, they provide free popcorn for customers. I keep a journal of daily run-ins like this and each day that I leave the house results in an average of 15–20 notes on things that caused a misophonic reaction and how I responded.
I have an ongoing battle with ride share services like Uber and Lyft. Over a third of my rides end quickly when I realize the driver is smacking their gum. I am then stuck someplace on the side of the road far from my destination and have to call a second ride, hoping fate smiles upon me and the next driver is different. Often I am charged for both full rides even though neither got me from my origin to my destination. I’ve started contacting drivers ahead of time with a text that explains my condition and a request to not eat or chew gum while I am riding. It has largely been met with mockery or completely ignored.
Though it is neither, I often try to correlate misophonia with a phobia or an allergy when explaining it to others. Like allergies and phobias, misophonia makes no sense. There is an irrationality behind these afflictions that make it difficult to understand just how real and life-altering they can be. Why, after all, would someone have an extreme panic or anger reaction to the sound of crunching tortilla chips or yawning? This is absolutely the million-dollar question.
As there is no treatment nor any cure for misophonia, there are three primary ways of coping with it: avoidance, masking, and information.
Avoidance is most common. This can be completely avoiding a place, person, or situation that activates the misophonic response ahead of time, such as my inability to ever have a meal with my friend who is a smacky eater. Avoidance is usually situational, however. Yesterday I went to donate plasma, walked into the donation place, and instantly heard another donor popping their gum. I immediately turned and left. An hour and a half of bus transfers to and from the center were for naught. Maybe I’ll try again tomorrow. I miss out on so many positive events daily because of avoidance.
The second coping method is masking*. This includes earplugs, earphones, white noise machines, or anything that lets us stay in an activating situation by covering the noise that is causing our reaction. I carry earplugs and headphones everywhere and it sometimes helps me stay on a bus to my destination instead of abandoning the ride. The downside is that I end up missing important parts of conversations. I often don’t hear the voiceover on the bus telling me my destination is ahead. Many misophones will have box fans or white noise generators throughout their homes to help tone down incidental sounds. My ex, HK, who also has misophonia and a more serious case than myself, would leave our kitchen and bathroom exhaust fans running constantly to drown out random instigating noises that happened around our apartment.
*When I first wrote this, I was unaware that “masking” is a term used in the autism community with a different meaning. In this article, I use it to simply mean “blocking out the trigger noise”.
I could write an entire article on the measures HK and I took to manage problem noises, from removing zipper pulls from clothing to replacing all ceramic dishware with soft plastic plates and bowls. Gum and chips were banned from the apartment.
The third coping method is information. I am trying to focus on this lately. Hence this essay. I want to let people know what misophonia is, how seriously it affects me and other misophones, and, while they may not fully understand it, ask them to realize that it’s a real problem and they can help me. I have printed business cards I hand out which explain, very briefly, the condition and ask people to abstain from offending noises while I am around. They have done some good. Over the weekend, I sent an email to the owner of a local café I attend frequently to explain misophonia and to humbly ask if the whistling cooks can just not do that while I am there. The owner’s response was sympathetic and promised to address the issue. I cried.
Because misophonia is unlike other neurological disorders, and possibly touches on mental disorders like anxiety and depression, researchers have lately gained an interest in understanding it. A pioneering new study, covered variously in Time and Psychology Today, proves that misophones experience a markedly different brain function when exposed to their activating noises compared to non-sufferers. Misophonia might be tied to certain mental health conditions. I recently presented an informal poll to an online social network of misophones and, though the sample set was only seventeen responses, all of them reported having at least one other mental health concern, such as bipolar disorder or an anxiety disorder. There is increasing thought that misophonia is a form of PTSD. None of the respondents to my question reported “no other mental health issues”.
Because misophonia is a deeply isolating disorder and misophones must abstain from common, healthy experiences like socialization, most jobs, family gatherings, commuting, entertainment, literally anything normal people are able to do, it can be especially difficult to initiate a conversation about it. When we do, we are often dismissed or not believed. This has to change. It’s a very real disorder that is studied and diagnosed and I’d give anything to be free from it. HK wished for voluntary deafness. It’s understandable given her level of constant suffering. Misophones are sometimes driven to suicide.
I thank you for reading this and absorbing what it says. Perhaps you know someone who experiences this disorder and is unaware that there is a term for it, that it is diagnosed, and there is increasing research and support for managing life with misophonia. I hope you will take into consideration how your own loud gum smacking, eating, sniffling, or pen clicking (et. al.) in public might actually be ruining someone’s day and placing them in a problematic situation. If you are interested in knowing more, there is increasingly wonderful information on misophonia online and I hope dearly you research it more. If you notice a stranger shooting you a stern look and perhaps leaving, you might have activated a misophone with whatever you are doing. That person may choose to stay home next time, becoming increasingly shut off and depressed. And now you know.
If you have comments or would like more information about misophonia, please check out the site for soQuiet.org, a nonprofit dedicated to spreading awareness and understanding about misophonia.
