Living with misophonia

Misophonia is finally, slowly, starting to have its day in the sun  — the Washington Post did a feature on it in December, for example, and there seems to be a flickering awareness of what it is. Sort of. With the exception of the people who have it, though, a lot of that awareness is rather dismissive. People either don’t really understand it or they’ve had misophonia explained, but they don’t think it’s real, or valid. Which makes it extremely difficult not just to seek treatment, but to work with friends and family on managing the condition, setting boundaries, and being respected when you ask for accommodations. In the workplace, it’s even worse, as employers tend to lag even further on these issues.

People who have misophonia know exactly what it feels like and how acutely exasperating and enraging it is, how it can utterly degrade our quality of life and leave us screaming with frustration. People who don’t might want to sit down and learn a bit more about it — especially if they view it dismissively or think it’s no big deal. And those resistant to accommodations definitely need to take a seat, because they need to understand why misophonia can be a huge impediment to quality of life, functioning, and in some cases the ability to perform basic tasks of daily living.

Misophobia is not a formal condition in the Diagnostic and Statistical Manual, though that doesn’t make it any less valid. Newsflash: It takes time for newly identified and explored conditions to enter diagnostic canon. Typically, it comes up in mental health contexts, but it can also be explored through neurologists. People living with misophonia have an extreme sensitivity to sound. I don’t mean that we hear really well (some of us do, some of us, like me, are actually hard of hearing!), but rather that some sounds become triggers, evoking really intense emotions. Anger, frustration, irritation, panic, disgust, and a flight-fight response are not uncommon, and the noises that trigger us, unfortunately, are really common.

Chewing ranks as a high one, especially with crunchy foods. Tapping pens and feet. For some people, typing. Clicking noises. Crackling sounds. Repetitive noises in general. Sometimes it becomes such a big issue that seeing movements associated with trigger sounds sparks the same kind of response — I don’t have to hear someone chewing to start feeling panicked and angry, for example, all I have to do is see a jaw moving. We aren’t making these responses up. They’re not being put on for fun or attention; when I hear someone chewing and bolt from the room or get testy, it’s not because it’s super cool and fun to be the center of attention for flipping out over nothing. I would give anything to be able to sit around a dinner table with friends and just be chill, hanging out with people I like. To not tense up when I see someone open a bag of candy, or abruptly turn away when someone starts sucking on a cough drop. The knowledge that seeing someone chewing on a gummy bear will make me tremble with rage doesn’t make me feel too awesome.

The origins of misophonia aren’t really understood. Most people develop sensitivity to sound somewhere between nine and 13, and it tends to get worse over time — in my case, I think a big part of that has to do with the fact that because people treated me dismissively and rudely, my sensitization became exasperated. When people invest a lot of energy into telling a stress reaction is made up, the stress and tension you experience around that reaction increases, making it worse and creating a spiraling effect. I get stressed out around people who eat and tap their feet and make certain other noises, they get huffy about it, I get tense because I feel like I should be able to deal with it better, and no one is happy. It’s worth pointing out, again, that people who think misophonia is made up might want to reconsider that stance given how much suffering it causes. Just because a condition may be psychological in origin doesn’t make it any less serious.

Misophonia is likely not physiological, beyond the processes involved in interpreting sound. For whatever reason, these noises have become associated with sources of distress, and people exhibit stress reactions in response to them. Those responses are physiological, by the way: People with misophonia start sweating, trembling, and showing other signs of flight-fight responses when they’re exposed to negative stimuli. But sure, go ahead and tell me I’m making it up and it’s all in my head.

This isn’t about a fear of sound, but specifically about the translation of what should be a neutral sound into a bad one. Sometimes, the linkage is obvious, and sometimes it’s not. Like other conditions with a strong psycho-cognitive component, the best way to address it may lie at least partly in therapy, but that doesn’t invalidate it, and sometimes it doesn’t help. (I’ve been working on my aversion to chewing for years.) Some people use noise-canceling headphones and similar tools so they can navigate the world, for example, or make accommodation requests in the hopes that people around them will respect the issue.

Misophonia is real. It really, really sucks to be surrounded with noises that trigger stress reactions in you on an almost daily basis. It doesn’t help when people say you’re lying or making a big deal out of nothing. If you don’t have misophonia, don’t do that. And think about how you can accommodate people. If someone asks you not to eat around her, don’t eat around her. If someone says he’d like you to sit on his other side so he can’t see you jiggle your leg, please do it. Maybe you think these things are irrational and ridiculous, but they cause actual distress in actual people, and it’s not a big deal to make those accommodations.

While you’re at it, confront people who mock misophonia and claim it’s not a real issue. When people roll their eyes, tell them they’re being inappropriate. When people make a point of refusing accommodations, tell them they’re behaving badly. Make it clear to the people around you who may be struggling that you want to provide them with a safe environment where they can speak without judgement and sit in quiet, if they want to.

Image: Ear, Travis Isaacs, Flickr