Living With Misophonia
I’m standing in line at the cash register in a clothing store in Orlando, when suddenly I hear it.
The girl in line behind me is standing so close she’s almost touching me… and she’s chomping hard on a stick of gum, then cracking it loudly in my ear every few seconds.
The hair on the back of my neck stands on end. She’s going to do it again, I just know it.
I start counting in my head, and it’s roughly every ten seconds, the loud, obnoxious chomping broken by the loud CRACK. The line isn’t getting any shorter: the woman at the front has a bag of returns she’s complaining about, a supervisor is being called, and…
I literally cannot stand it.
No, seriously: I mean, I know it’s all the rage to use ‘literally’ to mean ‘figuratively’, but the blood is pounding in my ears, my hands are shaking, and I swear to God, if I have to hear this girl crack her gum one more time, I’m going to…
Instead, I turn and leave the line, abandoning my planned purchase and racing to get away from this hideous, repetitive noise, which is literally – LITERALLY – making me want to punch someone.
It’s not the first time this – or something like it – has happened.
I, you see, suffer from misophonia : a little known condition which is probably best described as an extreme sensitivity to certain sounds or other triggers. One of my triggers, needless to say, is the sound of gum cracking – or being chewed loudly. Other triggers include things like:
– the thumping baseline of music playing at a distance.
– the tinny sound of music/radio seeping through cheap headphones.
– someone clicking a sweet against their teeth.
– or hitting their cutlery against their plate with every bite.
and on, and on and on.
And, I mean, I know what you’re thinking. You’re all, “Er, NO ONE likes hearing those sounds, Amber – enough with the special snowflake act!”
It’s true, of course – and it’s probably one of the reasons misophonia is so easily dismissed by a large part of the population. The fact is, though, for most people, those kind of sounds are a minor annoyance at best. For someone with misophonia, on the other hand, they’re like a form of torture, invoking a powerful fight or flight response … which is why I ran out of that store a few years ago (So long, beautiful dress I never got to buy!) rather than turn around and scream at some poor girl to STOP CRACKING GUM ALREADY. Which, honestly, I was REALLY close to doing.
I, you see, suffer from misophonia: a little known condition which is probably best described as an extreme sensitivity to certain sounds or other triggers.
I’ve felt like this about certain sounds for as long as I can remember, and, just to add to the fun, I also have some visual misophonia triggers, too. Things like…
– hair twirling.
– thumb twiddling.
– foot waggling.
– feet rubbing together.
So, basically any kind of repetitive motion happening within my eyeline, really. These kind of actions will all provoke that same kind of instant rage which makes me want to – and sometimes HAVE to – run away, just to escape it.
Sounds fun, no?
It isn’t, needless to say: not for me, and not for any of the members of my family, who’ve had to put up with years of being asked repeatedly to please, PLEASE stop rubbing their feet together like that, or I will LITERALLY DIE OVER HERE.
For years, I assumed I was just an asshole.
So did most people I met.
Then, a few years ago, I came across a news article about misophonia, and all of a sudden, everything clicked into place. I forwarded the article to my husband and parents. “Sound like anyone you know?” I asked. “ER, YES!” came the instant response.
For years, I assumed I was just an asshole.
It was me down to a T – it even mentioned the loathed foot waggling/rubbing, which had enraged me for my entire life, and which still prompts a physical feeling of disgust which I can only liken to the sound of nails down a blackboard, say. I’d never encountered even one other soul who understood this reaction, let alone shared it, but here I was, reading about it in a news article, and discovering there were other people just like me, all over the world. I mean, we couldn’t ALL just be assholes, could we?
(Er, on second thoughts, maybe don’t answer that…)
That article helped make me feel a bit less like a freak… but the jury was still out. My family all agreed that if misophonia was actually A Thing, then I definitely had it. But WAS it? A Thing, I mean? Or was it maybe just a Made Up Thing, designed to make all of us Absolute Assholes feel a little bit better about ourselves?
I wasn’t sure: and, of course, reading about something on the internet isn’t the same as actually being diagnosed with it – which is why I chose to keep quiet about my suspected misophonia, and to continue carrying earplugs with me everywhere I went.
Then, last year, I started seeing a counsellor in the run-up to my c-section, and one of the things we talked about was my phobia of hospitals, and just why, exactly, I was so totally freaked out at the thought of having to stay in one. So, we discussed all of the obvious reasons – the fact that I might, you know, DIE, being the main one – and then I sheepishly brought up one of my other big fears: that I wouldn’t be able to handle the NOISE.
Hospitals, you see, are noisy places. I’d already spent a lot of that year visiting my mother-in-law in the very hospital I’d be giving birth in, and I’d been totally horrified by the TVs blaring loudly in the wards, the music seeping out of cheap headphones, and all of the other sounds that never seemed to stop. I remember one afternoon we sat with Terry’s mum for over an hour, and the whole time we were there, some random piece of equipment emitted a loud BEEP! every ten seconds or so. I know because I counted… and yes, it really did continue for the full hour, by the end of which, I was about fit to be tied.
(And no, it wasn’t actually supposed to be doing that: it was a patient’s buzzer malfunctioning, apparently…)
I would not handle that kind of noise well: I knew it, but I was embarrassed to admit it, because… well, what kind of asshole complains about the noise of a place that exists to save your life, I ask you?
(Don’t answer that one, either…)
(I actually wouldn’t have complained about it, by the way. I had, however, done a bit of a recce around the hospital, and had decided that, if there really WAS music playing until midnight (Which actually happened in the ward my mum stayed in earlier this year…), I’d just go and sit in the waiting room for the rest of the night. Or the hospital reception. Or, you know, the car park or something. ANYTHING to escape the relentless THUMP! THUMP! of a partially-heard baseline, amiright?)
(Yeah, these are all rhetorical questions, OK?)
Anyway, I shamefacedly admitted to the psychologist that one of the things that was worrying me most about the hospital stay was the fact that I couldn’t seem to handle certain sounds without absolutely losing my mind. I expected to just be dismissed, as I always had in the past when I’d mentioned any of this to, well, ANYONE, really, but, much to my surprise, she looked up with interest.
“You’ve probably never heard of this,” she said, “But there’s a condition called misophonia, and…”
“OMG YES I’VE HEARD OF IT BUT I DIDN’T THINK IT WAS ACTUALLY REAL!” I gabbled incoherently, amazed that there was actually someone out there who knew what I was talking about when I said I wanted to murder people who click boiled sweets around their teeth before swallowing them.*
“Oh, it’s definitely real,” she assured me. “And it definitely sounds like you have it.”
I breathed a huge sigh of relief: FINALLY, I had a diagnosis! And it wasn’t just, “ASSHOLE.”
“The problem is,” the psychologist continued, “It really isn’t well understood. And there’s no cure.”
There is that, of course.
There is currently no treatment or cure for misophonia, which didn’t even have a name until the year 2000. That means that all people like me can do is try to develop coping strategies (Read about mine here.) I, for instance, use ear-plugs a lot – or, at least, I did before Max came along. I play my own music or TV to try to drown out the thudding baselines and tinny speaker sounds that bother me so much. And, if I find myself in a situation like the one in that clothing store in Orlando a few years back, I get the hell out of it, as fast as I can.
There is currently no treatment or cure for misophonia, which didn’t even have a name until the year 2000. That means that all people like me can do is try to develop coping strategies.
And, of course, it’s not like ALL noise will trigger the fight-or-flight thing. For me, it seems mostly to be repetitive or avoidable sounds. So, if I’m in a nightclub, say (Lol! AS IF I’d be in a nightclub!), the loud music won’t bother me at all: I mean, I’ll obviously do that Old Person thing of going, “I don’t know why it has to be so loud! Because when I go out with people, actually want to be able to HEAR them!”, but I won’t become incoherent with rage over it. If I can faintly hear the thumping bassline from a house at the other end of my street, on the other hand, I WILL BE LIVID. YOU WILL NOT WANT TO ENCOUNTER ME. Seriously, I’m the least confrontational person in the world, but if I can hear your bassline a-thumpin’, I WILL knock on your door and ask you turn it down. Then I’ll slink home and be so embarrassed I’ll want to die.
And that’s what it’s like to live with misophonia. I’ve been doing it for so long now that it was only a few weeks ago, when I read another blogger’s post about their own misophonia struggles (I’ve searched and searched, but I can’t for the life of me re-find that post, so if it was yours, let me know, so I can link you!), that it occurred to me that it might be something I should write about, if only in the hope that even one other person might read it and say, “It’s not just you, Amber: I think chewing gum in public should be punishable by death, too.”