I thought I was an asshole: it turns out I just have misophonia..

Misophonia: when sounds make you murderous…

I’m standing in line at the cash register in a clothing store in Orlando, when suddenly I hear it.

CRACK!

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.

CRACK!

And again.

CRACK!

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…

CRACK!

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…

CRACK!

Yeah, that.

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.

What is misophonia?

I, you see, suffer from misophonia : a little known condition which is probably best described as an sound sensitivity syndrome in which sufferers have a strong negative reaction to certain sounds or other triggers . One of my trigger sounds, needless to say, is the sound of gum cracking – or being chewed loudly. Other triggers include things like…

Common misophonia triggers:

– the thumping baseline of music playing at a distance.

– the tinny sound of music/radio seeping through cheap headphones.

– GUM.

– someone clicking a sweet against their teeth.

– or hitting their cutlery against their plate with every bite.

– loud chewing, chomping or slurping.

– whistling.

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 – it doesn’t have to mean you have a mental health condition, FFS.”

Which is true, of course – and 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 a selective sound sensitivity like 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.

Quite simply, misophonia makes me feel murderous. It’s like this red mist of rage which descends, making me feel anxious and panicky, and like I could quite literally kill the person responsible for the noise. I’ve always said that if I ever get arrested, it’ll be because someone was whistling in my street, or clicking their fork against their teeth, and, just to add to the fun, as well as these painful trigger sounds, I also have some visual misophonia triggers going on, too.

Visual Misophonia Triggers

– 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.

DEEP BREATH.

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 a psychiatric disorder called 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.

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…)

Being diagnosed with misophonia

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 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, and none of the other three people in the room at the time were even remotely troubled by it.)

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, and the thought of being unable to get away from these sounds, if they occurred, was causing a level of preemptive anxiety I was struggling to rationalise. I expected to just be dismissed, or told my reactions to these noises were totally unreasonable. Much to my surprise, though, the doctor 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.*

(*Not really.)

(*Yes, though.)

“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.”

Ah.

There is that, of course.

There is currently no medically reviewed treatment or cure for misophonia, which didn’t even have a name until the year 2000.

Although some people may find they have some success with things like cognitive behavioral therapy, the problem is that we don’t fully understand what causes misophonia, making it one of the least-well understood mental health conditions, and something there still hasn’t been enough research on for any kind of medicine or other cure to have been developed, more’s the pity.

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.

Misophonia Q&A:

Is there a misophonia test?

There’s no current test for misophonia, meaning that the only way to know whether you’ve got it is by comparing your symptoms to those of other sufferers, or taking medical advice from a health professional who can apply their own diagnostic criteria to what you tell them.

What are some misophonia examples?

I’ve listed qutie a few of my own triggers in this article, but the main thing that distinguishes misophonia from the simple annoyance many people feel from time to time when confronted with certain sounds is the level of rage it induces in sufferers. This will probably sound crazy, but I have genuinely never known rage like I’ve felt when forced to listen to some kind of repetitive sound which I have no control over. Under normal circumstances, I’m one of the least confrontational people you’ll ever meet, but I’ve been known to bang on a neighbours door to ask them to turn their bass down, run out of stores to get away from someone who’s whistling or cracking gum, or be reduced to tears by a particular sound I can’t escape.

Is misophonia a mental illness?

I didn’t go to medical school, obviously, so I can’t answer that question with any level of authority. For myself, though, I’d liken it to a compulsive disorder, a bit like health anxiety, for instance, which I also suffer from. I also find that my misophonia has strong links to anxiety; I’m not sure whether it’s the misophonia that causes anxiety, or whether my underlying anxiety causes misophonia, but I do think the two are connected in some way, and that treating one would quite possibly help treat the other. It’s how to actually DO that that’s the problem?

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.”

Is that person you, by any chance? Because, if it is, you have NO idea how much I’d love to hear from you…