Isabel Bader Theatre, September 2022, almost 2:00 pm on a Friday. A jury of my peers awaits for an unexpected trial. My laptop is connected to the projector. It’s almost time. When the clock strikes, I begin to plead my case in the court of public opinion — as public as an ENG140 lecture can be, anyway.
I don’t really remember the slides I made. I don’t recall the details of speeding through them, looking down at my hastily prepared script. But I wish I didn’t remember the experience of presenting in front of my class: every second is clear to me in reality. Because it wasn’t the first time — nor would it be the last — that I had to make such an announcement. I’ve done one for nearly every class I’ve had since 11th grade, explaining my situation to my classmates, though sometimes a lengthy group chat message does the trick. This was hopefully the first and last time I’d do it in front of a class size of 400 people, sure, but the situation itself was nothing new.
Merriam-Webster defines misophonia as “a condition in which one or more common sounds cause an atypical emotional response in the affected person hearing the sound.” It’s a little-known condition, and research on it is still emerging. A 2023 study done in the UK found that out of the 772 participants, approximately two per cent identified as having the condition, and only about 14 per cent of participants in total knew what it was called.
Because I’ve had the condition since the beginning of high school, I know all too well its impact on a person in a seemingly normal situation. Once, I had someone jokingly ask me if it was the fear of miso soup. They weren’t entirely wrong: the trigger sounds for misophonia can vary, but the one that affects me the most, it turns out, is eating.
Unfortunately, my condition is quite severe. The emotional response varies as much as the trigger sounds, but for me, it’s almost always anxiety. I have panic attacks when I hear, and see, certain sounds come my way. My brain is on constant high alert for any sonic danger in the vicinity. I like to call it my Spidey-sense. Most call it paranoia.
Misophonia is so deeply conditioned in my brain that a split-second screen of salad in a soap opera causes me to shudder. Seeing someone open their mouth to take a bite out of a sandwich causes my eyes to widen in fear. Even the sound of my own eating gets to me — I get extremely self-conscious, and my Spidey-sense goes off so much every time I hear a plastic bag that I often just give up trying to finish my lunch. So, as you may imagine, eating in public is difficult for me.
In a case like mine, accommodations are more than just helpful — they’re necessary for my survival. For days when I was on campus for hours on end, I’d need some privacy, some space to myself where I could feel isolated enough to eat properly. In high school, I was provided that space, and it was one of the few places I felt like I could breathe. So naturally, the first thing I did upon coming to U of T was ask Accessibility Services if they could provide me with such a place.
I felt my heart sink from my chest. How was I going to survive in university if I didn’t have a place to eat? I lived too far from campus to be able to go back and forth every time I needed a bite, and the subway would just add to my stress. And considering the toll my paranoia takes on my energy levels, I can’t just skip meals so easily.
I couldn’t just give up, though, so I kept on searching tirelessly for any organization I could think of within the university’s system that seemed to have the authority to provide me with the space I needed.
Registrars and libraries all referred me back to Accessibility Services, said they didn’t have enough space, or told me there was nothing they could do. I’m sure they meant it too, since I don’t think there was any case like mine that they could use as a reference. There was a brief period in which I had access to a meeting room at certain times every week, but the meeting room got busy when the term ended and I was left with uneaten lunches and increasing desperation.
To this day, I’m stuck booking library rooms for every possible time I think I might need one. It’s the only thing I can really do at this point: hope that no one booked something before me. Pray that the windows don’t face someone else with a meal in their hands. Rinse and repeat, every week.
Survival: What works and what doesn’t
To be fair, I haven’t had entirely negative experiences with the university and its staff. Pretty much all of my professors have been as accommodating as or more than I needed them to be. Typically, they too have never heard of the condition, but they’re often eager to learn. I’ve had to ask for permission to make the announcements pleading for people to avoid eating in class for every course, and with few exceptions, they’ve been willing to lend me the floor for a few minutes. They weren’t all perfect, but I can’t expect perfection: nobody is. I just do what I can to survive.
Survival in a world filled with imaginary and real danger is no easy task. Right before entering university, I ordered three coloured bucket hats to wear in public so that I could pull them over my face in case of visual triggers. I was wearing one of those hats during my big announcement.
Riding the subway is filled with people chewing gum or eating, so the hat is paired with noise-cancelling headphones blasting my favourite music. The face mask completes the look of obscurity I’m going for, though I’m sure I stand out at times. But these methods work as well as I could ask for.
To be honest, it’s not easy, and it never has been. People forget, people ignore, and people just suck sometimes. I won’t blame them. My survival is my priority, not theirs. People often don’t realize the severity of negative reactions to triggers. Sometimes people just think that they can be quiet.
In large classes, people often forget about that one kid who’s sensitive to eating, and they get hungry. So what do I do then? It’s not a perfect system, but I just leave. Sometimes crying. Sometimes out of breath. Sometimes just tired. There’s not much else I can do.
In those cases, lecture notes are a lifesaver. Though accommodations for outside of class time were lacking, Accessibility Services did help quite a bit with study help and exam accommodations, I’ll give them that.
Often, people think I don’t see or hear them. I do — pretty much always. I just can’t exactly approach them in that situation, though, especially when they’re the cause of my panic — you don’t run toward the bear you’re trying to escape.
Despite all of this, as someone who experiences misophonia, I wouldn’t be able to get through university without other people. Having a support system has been so much more vital than I initially thought, even though it’s often also made up of people who make mistakes.
Messing up is fine, as long as you stop when I ask you to, and as long as you make an effort. Little things can build up in a negative way, but they build up positively as well. Knowing people care is so important, and I don’t know if people realize the extent to which people with mental health issues need community as much as they need space. So I want to express gratitude to those who have helped me.
My family has been such a huge help throughout all of this. My mom: the person who went through all the trouble to find out what the condition was, and even found a clinic that treats it nearby. My sister: my subway buddy who puts up with all my annoying messages even when she’s studying. My dad: the one who makes an effort to drive downtown whenever he can to pick me up on days I can’t deal with the subway. All of them together, who always ask me how I’m doing, spend time with me, and keep me up to date on all the dinner gossip I missed. It’s these things, big or small, that make me appreciate them to no end.
Not to be missed are all of my friends, who always help me out when I’m in need. One gave me a key to her apartment in case I ever need some privacy, which has been a lifesaver. Others leave class with me to help me calm down after a rough situation. I’ve had friends walk across campus to pick me up from class so they can help me feel better.
I can’t stress enough how important it is that they don’t exclude me. They’ll make efforts, making sure not to eat when they know I’ll be there, but they’ll still invite me to events, talk in group chats with me, and just overall support me. I sometimes think that I’m a burden on people, but the people around me never let me think that way, and I can never thank them enough.
Finally, I want to say thanks to my classmates, who don’t know me personally but still make an effort. They ask me questions about what’s okay and what’s not, or sip their drinks quietly — though drinks are fine — or just talk to me like a normal human being. I’m okay with being treated differently — since I’m literally asking for people to make an effort to do so — but it never feels good to be excluded. The whole point of explaining my condition to people is that I want to be included.
Bravery out of necessity
And so we return to September 2022, on that fateful day right before my second lecture of the course. I had just finished my presentation, leaving my contact information on the screen if there were any questions. I immediately noticed a bunch of notifications on my phone: people were asking questions, and the buzzes continued as I returned to my seat on the balcony.
The usual questions were there, about whether bubble tea is okay — it is, as long as you don’t chew on the tapioca — and if lozenges are fine — again, just avoid chewing. There was also that one random comment about my bucket hat — thanks for the compliment. I had a couple of people tell me I was brave for standing up like that and giving a speech about something so personal. All somewhat expected, nothing out of the ordinary. What I didn’t expect were a few kindred spirits.
By this point, I had met one, maybe two people with the same condition. Suddenly, I had people messaging me, telling me they had the same problem but hadn’t had the courage to tell anyone, especially not in a theatre full of strangers. They thanked me for doing what they didn’t feel they could, and I was even able to give people the name of the clinic where I was getting treatment.
There still weren’t that many, only a few, but those were only the people who told me about it and knew that they had it. I don’t think I’m a hero, but I’m still proud of myself for doing that presentation, even with all of my stutters. It wasn’t easy, but it wouldn’t be easy for anyone else to do it for me either.
To this day, I meet new people who relate to having misophonia. Not a crazy number of people, but it feels crazy that I’m not alone when I used to think I was. And to think: none of them would have said anything had I not said something first.
I don’t like having to constantly bring up to near-strangers the state of my mental health. It probably doesn’t feel great to hear that from a near-stranger either. But expressing one’s mental health shouldn’t have to be something that takes as much courage as it does. I don’t want to be called brave. I don’t want to have to be brave.
If you have to take anything away from my story, make it this: for those of us who need help, asking for it is no easy feat. Making that effort, though, is certainly worth it. For everyone else, make sure that you’re showing enough kindness and compassion to listen.
And if you see a girl in a bucket hat and AirPods running past you and avoiding eye contact, just turn around and finish your sandwich.