“I Need to Sit Next to Someone who is Not Chewing Gum”

Me and My Misophonia

What is it?

Simply put, Misophonia is a preoccupation with a particular sound that triggers strong emotional responses such as irritation, aggression, rage, panic or even hatred. The trigger sounds for most people with Misophonia are things like dripping water, chewing, snapping gum, breathing or repetitive noises such as pencil tapping. The National Library of Medicine The Motor Basis for Misophonia | Journal of Neuroscience (jneurosci.org) defines it as a “preoccupation with a specific aversive human sound that triggers impulsive aggression.” Fewer than 200,000 cases per year have been reported in the US, however many researchers believe it is more common than that; (Prevalence of Misophonia - Misophonia Institute). The concept has been discussed and debated in terms of where it belongs in the books of mental health and diagnosis. Of course, anything that keeps a person from functioning normally in life can be considered a disability, however there is concern that diagnostic symptoms such as DSM-5 tend to over-pathologize ordinary quirks and eccentricates, so some have trouble calling it a disorder. Most of what I have read talks about it has a mental illness of sorts. Some experts point out that cases of Misophonia might be simply one feature of a broad pattern of sensory intolerance. Bottom line, it’s rare, not well understood, but interest in Misophonia is growing. What Is Misophonia? (webmd.com)

 Introduction.

I am writing about my experiences because it is something that affects my daily life and I’m hoping to add to the growing discussion about what Misophonia is and how it may impact people close to you.

 What does it look like?

My husband, Brent can probably best describe how it looks, because for our entire married life, he sees (or hears about) its impact on me, on a pretty regular basis. Some examples of what it looks like follow. If someone behind us in a movie theater is chewing gum, I will likely have to move to another location to be able to focus on the movie. Brent is extremely understanding and has made this move with me on a number of occasions. It can also look like me just getting up to take a break from the situation. One time, at a Cardinals game, the woman right next to me pulled out a stick of gum and started chewing it about the third inning. I put in an earplug and tried to remain in my seat, but I couldn’t. I couldn’t stop obsessing over the chewing, and becoming more and more frustrated by the noise. I tried. Brent squeezed my hand, tried to divert my attention, but it didn’t help (we go through this often). The situation became increasingly uncomfortable, heart racing, tears coming to my eyes. I had to get up and walk away. We’ve been married for almost three decades, and Brent knew why I was leaving. Over the years, he has also learned to spot “gum chewers” and while it doesn’t bother him of course, he is extremely understanding and convinced that it is a serious issue for me. When I got up to leave, he asked if I wanted him to go with me. When I returned to my seat about an hour later, she wasn’t chewing gum anymore. Then, I was ok.

Other times, it can be bad. On a few occasions, it has looked like me, in the stall of a public restroom, crying and trying to catch my breath – much like a panic attack I supposed. I am talking to myself, trying to calm, knowing that the “threat” is gone and I am ok. I’m also often texting my husband or a good friend who understands (thank you Brent and Kristin), and they are trying to calm me down electronically. Once, after this kind of episode, I returned to the meeting that triggered my reaction, and the two people who were chewing gum (very loudly in my opinion but probably not loud at all) were still chewing. Both knew of my disorder, but perhaps they forgot (this is common), or didn’t really understand the impact. Their apparent disregard (which I realize wasn’t really a “disregard” rather, just not on their radar), made the sounds of the chewing ten times worse. I knew the meeting was only going to last a few more minutes so I took deep breaths, sat as far away as I could and managed. After the meeting, they asked if I was ok since I had been gone, and they could tell I had been crying. I disclosed everything, and I cried. There’s really no good way to explain this to people that’s not uncomfortable and embarrassing. They immediately spit out their gum and apologized. That wasn’t necessarily the reaction I needed. More importantly than “spitting out their gum” was for them to understand that this was real. I needed to be affirmed, not that “they” had done something wrong, because they hadn’t. I needed them to understand I had a disorder and I was uncomfortable and embarrassed. I needed them just to absorb, maybe empathize, but I think that’s a hard ask.

Other times, it looks like me in situations one-on-one with people like therapists who are offering a service in an intimate setting, and they are chewing gum. A few years ago, I was receiving physical therapy for my supraspinatus, a small muscle in the upper back. The therapist, who happened to be chewing gum, was right behind me, very close, helping me with exercises, chewing in my ear. I was tense, uptight, my heart was racing and I could think of nothing other than her gum. I could hear nothing, other than her chewing. I had to tell her about my discomfort and I was embarrassed and flushed. Interestingly, she apologized and said, “I can’t believe I was doing that because there used to be someone in my physical therapy classes that chewed gum and it drove me crazy. I sometimes had to leave class.” More interestingly, in spite of her apparent understanding, she was chewing gum upon most of my subsequent visits to physical therapy, and we had the same discussion every time. Of course, that’s not her fault, or her problem. It’s mine.

Once, I cried all the way through a massage because I was too embarrassed to say anything. The therapist was chewing gum. I just prayed the time would go fast. I cried. She asked me what was wrong and I said I had anxiety. I couldn’t bring myself to tell her that the gum chewing was more than I could handle. The way I got through it was to know that it would be over in less than an hour. That was years ago. Since then, I have found my voice, but that doesn’t always make it easier, because sometimes people laugh, other times they don’t believe me and other times they get mad because I’m infringing on their rights to chew gum. Which I understand, and which is why I feel so humiliated about it.

What does it feel like?

Physically, my heart races, my hands shake and if I am stuck in the situation, all I can do is cry. If I can leave, I do. Emotionally, I feel embarrassed and lonely. The best way for me to describe it to other people is that it is like “nails on a chalkboard.” If you had to hear that noise over and over from the person next to you, and if it bothered no one else buy you, that’s what it feels like. Cognitively, I can focus on nothing else, even when I try. All I hear is the chewing noise. All I can see is the moving of the mouth. It becomes an obsession. It overtakes me. It’s all encompassing. And at the same time, I know I’m likely the only person in the room that is having this reaction to that sound.

As I have stated, others’ reactions to me matter so much. Perhaps it is because I am a sensitive person, but I just wish sometimes for grace and understanding, although I know that’s a big ask on something as unknown as Misophonia. Sometimes, people flat out don’t believe me. One friend, when an article about Misophonia was posted on social media, and I was tagged, publicly challenged the notion as if it wasn’t real. Other times, people joke about it, laughing like it is just some “quirk” that is a little irritating, even pretending like they are going to pass out gum to everyone around me. These experiences further my feeling of isolation and “being different.” My wish is that people would simply acknowledge that it is happening and that it is specific and real and not easy. One person said, “Tell me what it feels like.” That simple affirming question said that she believed it was actual, and she was willing to hear about it. She made me feel legitimate, and ok about it, affirmed that it was genuine and my feelings were legitimate. (Thank you, Vanessa.)  

 How long have I felt this way?

Growing up in the 1960’s and 1970’s, people didn’t talk about anxiety or mental illness, so it never occurred to me that maybe there was something “real” and “wired in my brain” that made me feel the way I did about gum. I just thought I had a terrible and unique idiosyncrasy, I knew that nobody understood it or really even wanted to hear about it, but I knew it was something that dramatically impacted my daily life. Once in junior high, the start of an environment when students had a few more freedoms, I remember for the first time in school, having to navigate classes where other students were sitting behind or beside me with gum in their mouths. Some teachers, of course, didn’t let us chew gum (I was so grateful for those teachers), and in other cases, the classes didn’t allow for gum chewing (like choir and band), but I remember vividly going into classrooms at Liberty Junior High, hoping that if this was a class where gum was allowed, that nobody was chewing it around me. I would have never thought to tell a teacher that it bothered me, let alone a peer, so if it happened, I had to deal with it knowing that class would be over in about 50 minutes and I would get a new start the next hour. Once, in Mrs. Hester’s English Class, I wrote a story about it, but it was from the point of view of a piece of gum, and how tragic it was for the piece of gum to be mutilated by someone’s teeth. Weird, I know. I was an adolescent dealing with a disorder I didn’t know I had.

As one of four children in my family, another thing I remember about gum was family vacations. We would pack the four of us kids and mom and dad in our Mercury Station Wagon, Ford Fairlane or Chevrolet Impala, depending on the year, and drive to south Missouri for a week every summer. As the youngest and smallest, I was always wedged in the front seat between my mom and dad, and my siblings sat behind us in the backseat. Our tradition was to stay in a motel with a swimming pool (our favorite was Starlight Motel on Old Highway 71 in Noel, Missouri). Our fun was to swim at the motel during the day, and ride go-carts at night. Sometimes we swam or floated the Elk River. These are wonderful childhood memories for me, but are not without the constant recall of dealing with “gum.” A vivid recollection of these summer vacations is that when we would stop to get gas on the way, my dad and mom would tell us kids that we could all get one thing (meaning a can of pop or a candy bar or yes, a pack of gum). I remember from as early as I can, begging my siblings NOT to get gum, because I wouldn’t be able to stand the chewing in the car. Interestingly, I can never remember a time when they DID get gum. I don’t know if they just would have rather had candy or pop, or if they were being nice to me, but I was so grateful that they did not chew gum in that closed up car! (Thank you Pam, Bryan and Bob.)

Moving on through high school and college, people who knew me, knew it bothered me, and mostly didn’t chew gum around me. When I was faced with it, I found ways to adapt, like changing seats, standing in the back with the excuse that my back hurt or putting in earplugs. I remember it as always being “a thing” and at different times and spaces, it was harder to navigate than others. Unfortunately, as I get older, it seems to be getting worse.

When I worked as a teacher, principal, assistant and then deputy superintendent, I was fortunate to have colleagues who understood or at least tried. A couple of very close colleagues had gum in their mouths on a regular basis, however, they knew of my issue and they never chewed it, just let it rest under their tongues. (I know – too much information, but this is how obsessed I am.) The fact that they were willing to never chew it around me, was even more comforting because it gave me that affirmation and understanding. Kim even used to say, “If I forget and start chewing, give me a look.” To me, this was such a supportive and affirming act because she validated and accepted that my disorder was true and not something I was “making up.” (Thank you, Kim and Joe!)

 How it has impacted and influenced my life for the positive?

When I retired my position as Deputy Superintendent, I acquired many other professional jobs, but I also decided to volunteer to tutor. I was matched with a nine-year-old girl who has now become a friend. She had trauma in her life, and has been diagnosed with a number of mental disorders. It was my charge to help her with her school work. We met at a local library once a week and we read, played math games, wrote and talked. From the very beginning, she was an honest and sweet girl who I came to love. My Misophonia (more so, my understanding of it) came in handy one day at the library, and I have shared this story with other educators. It’s real!

One day, this special nine-year-old was reading to me and our session was going well, and all of a sudden, she said to me, “That guy is staring at us.” I said, “Which guy?” She pointed to someone two tables away. Now, from my perspective he was not staring at us. Maybe, he looked over once to see what we were doing, or maybe we were loud and he heard us, but I just didn’t feel like he was “staring at us.” THAT was not the point. What WAS important, is that SHE FELT like he was staring and she couldn’t focus, at that point, on anything but that. She kept saying, “He’s staring at me.” At that moment, I remembered my Misophonia, and the way I have felt so many times when “someone was popping their gum” and people around me didn’t even seem to hear it, and certainly didn’t affirm that it was a big deal. When I couldn’t function because of someone chewing gum, others often dismissed it and told me “Don’t look.” That day, I said to her, “What should we do? Would you like to move to another table? What would help? Tell me what you need.” Knowing the strong feelings she was having, it was important to me to affirm her, and help her think of a solution – not to dismiss them. Interestingly, in a few minutes, she wasn’t concerned about it anymore and we went on with our reading. I honestly believe that by affirming her feelings, believing her, helped her move forward. She didn’t have to convince me; she knew I trusted her instincts and believed her, and that was enough to help her move on.

In that same regard, I think in education in general, we have to know that students and colleagues come into the space with different issues and that we have to understand others’ needs and possible discomforts. We have to know that all disabilities can’t be “seen” and that we should strive for trusting relationships where people can talk to us and we can understand.

All in all, I hope this disorder has helped me be a more thoughtful and compassionate person and is a reminder that I don’t know how people are feeling and what might be happening with them. I know that every day, people enter airports, schools, stores, cabs and social events with various fears and anxieties that they keep secret, and that the public can’t see. I know people often struggle to be among people, because inside, there are things that they are dealing with, and for them, navigating the world at certain times and under certain circumstances, can be very tough.

While sometimes, it is my hope and even my request that someone “spit out their gum,” my real ask is this. Please don’t laugh at me. Educate yourself as much as possible. Give grace. You might not believe it, and it can be a difficult thing to understand, but if someone says, “I need to sit next to someone who is not chewing gum,” it’s a legitimate ask and there’s much more behind it that you might realize!