One of the most difficult and important questions you face if you have misophonia, is whether or not to tell other people that you have it.
There are a huge range of complex emotions and factors at play. Will they understand? Will they treat me differently? Does it change anything?
Some misophones prefer to put on a brave face and keep it hidden from the world. Others tell just their immediate family and loved ones. Then there are those that tell friends, colleagues, everyone.
The truth is there’s no right or wrong answer to this, so I’m going to take you through my own experiences and then I’d be really interested to hear your own take.
My earliest misophonia memories where at the kitchen table during meal times with the family. I won’t talk about the triggers (I’m sure you can guess) but my mum was by far my worst trigger factory for me. This was no doubt magnified by the fact she used to sit right next to me, amplifying the sound by what seemed like 1,000 decibels.
As the number one source of triggers in my youth, mum would have been the natural person to tell. Partly because she’s my mum, and would encourage me to tell her everything, but also for the more pressing reason that the noises that she made caused me, at times, unbearable misery.
Sometimes she’d ask why I was making strange faces at the table, or sticking my fingers in my ear, but I always managed to switch the conversation or blame it on something else… a headache, earache anything.
She was blissfully unaware and I never told her.
The reason I didn’t tell her was because I thought she wouldn’t understand. How do you explain something you don’t understand yourself and can barely put into words? I thought she’d be upset and angry.
Now that we know misophonia has a name it’s tempting to look back with hindsight and think “if only I’d dealt with it this way at the time”, but actually, ‘at the time’, we didn’t have a clue. If you’re feeling that way, please let yourself off the hook because you’ve not done anything wrong.
Up until very recently I didn’t know how to explain it to another living soul because the idea of it seemed as inconceivable as the rage I felt when I hear someone crunching an apple. I knew I couldn’t cope with certain sounds or movements but I didn’t realise that it could be a ‘thing’. It just seemed so random and bizarre.
At best, I thought that maybe I was wired a bit differently from other people. If the misophonia got really, hellishly bad I would sometimes (when I was much younger) tell the offending family member to stop making the noise, but I would never let them know what was really going on in my head.
The one person I told when I was child was my form tutor. He was nice guy and asked us one day all to write down our single greatest fear. So I wrote him a note saying “I can’t stand the noise that people make when they eat and I don’t know how to cope and it’s making me really unhappy” or something to that effect. He never followed up and nor did I (and frankly I don’t blame him). Let’s face it a bit of an odd bolt from the blue. Might as well have told him I was allergic to joy.
There was a very real reason I didn’t tell my friends or any of the kids at school and that was because kids can be absolute turds. Give them a weakness and they’ll exploit it. Letting them know that you can be flung into a debilitating, internal rage by certain sounds… sounds that they can recreate REALLY easily, would be lunacy. It’d be like Superman buying Lex Luther a gift subscription to Kryptonite monthly.
I have no regrets that I didn’t tell my school friends. I’ve convinced that it a) prevented a great deal of unnecessary bullying and b) probably forced me to evolve coping mechanisms that would put me in better stead later on.
Fast forward 10 years and I was living in halls at my university. 3 glorious years of dancing badly, working hardly and misbehaving.
One of the best things about leaving home as a misophone is that you suddenly have much more control over the condition
If you’re reading this as someone who’s still living at home, don’t worry, I promise you it gets better.
As an adult you can leave a room at will and no-one will tell you off. You’re not forced to eat every meal right next to someone and you can avoid certain situations and people.
At uni I decided, while very drunk, to tell my best friend that I was tripped out about the tiny movements her boyfriend (and my other closest friend) made with his hand when we were at the cinema. She’s the most emphatic person I know… and yet she didn’t get it at all.
She wasn’t angry or weird about it, she just said she genuinely never noticed or was ever bothered by that kind of thing. I chose to confide in her because I thought if there was even the tiniest element of people finding something like that annoying, she would be honest and tell me.
That was really when I realised, once and for all, that this was something specific to the way my brain was wired.
I didn’t really talk to her about it after that, there wasn’t really anything else to say. But I think she was happy that I was able to confide in her. Moderate victory.
Fast forward another 10 years-ish and we get to the present day more or less.
It was 2014 when I first discovered that this thing actually has a name(s): misophonia and misokinesia. Now for the first time it suddenly feels as if everything is falling into place and starting to make sense.
As soon as I found out it was called misophonia, I devoured information and tried to look for research and tips and advice. While there’s some interesting stuff out there it still feels like this is almost completely virgin territory.
Nonetheless there were enough fancy (incomprehensible) academic studies online for me to think I could share this with my partner and a couple of close friends without them calling in the men in white coats and getting me sectioned, so I did.
Here was the response I got…
How my friends responded when I told them I had misophonia
They were politely interested but couldn’t really grasp it. They kept saying things like: “yeah I get that a bit” but they unable to truly understand or relate to it (no doubt due to the total lack of awareness about misophonia and lets face it, the weirdness of the condition).
When I told them how it actually felt, the uncontrollable rage and panic, they looked at me in disbelief. But you never seem angry or upset when we eat out? Then they were worried that I would get triggers around them and started feeling self conscious.
It was fine and they didn’t judge me but I also didn’t bring it up again because I didn’t want them to treat me differently. To be honest if I could I would probably go back in time and un tell if I could, but it hasn’t caused any issues either way so I’m not worried.
How my partner responded when I told her I had misophonia
When I told my partner about it she was extremely understanding. I think it may have helped that she’s had some experience with coping with mental illness, so in that sense I was lucky. She reassured me, didn’t treat me like a leper and tried to think of ways she could help.
For my part, I’m always do everything I can to try and make sure she doesn’t realise or feel uncomfortable when I’m experiencing a trigger. Whether it’s leaving the room for an opportune bathroom break or covertly shielding my ears.
I’ve found it really helps her knowing that sometimes if I’m being a bit frantic or panicky in public that it’s probably because I’m struggling with a misokinesia or misophonia trigger. That’s been a great help.
If you have an understanding partner then I would recommend letting them know. It’s a hugely tricky subject to broach, particularly if you’re younger and still living at home, so I did an article about it here.
Ultimately whether or not you tell one person or a hundred people about your misophonia it doesn’t change the fact that you have it. I know that sounds blindingly obvious, but what I mean is this:
Whoever you tell, people will still eat, fidget, walk in high heels and make sounds that tumble us into temporary madness and you know what? That’s fine, because they’re not doing anything wrong.
If you do tell someone, think about what you hope the end goal will be. I drew up a quick list of pros and cons here. Feel free to add to these in the comments below and I’ll add the most popular ones:
What are the potential pros and cons of telling your friends and/or loved ones?
Understanding – If it’s seriously effecting your relationship (due to confrontations etc), then letting that person know that you have misophonia could really help. If they can come to terms with the fact that it’s not about them – but that it’s rather certain sounds – they may feel less ‘got at’ and be able to be there for you
Awareness – Ok so this one’s more a pro for the greater good, but the truth is we do need to raise awareness about the condition. Not in a moany “woe is me” type way, but in an informative way. People need to know that this isn’t a made up bat shit crazy disorder, but a sensory disorder in much the same way synaesthesia is. If we can educate people and campaign for more research we can help people realise this and hopefully stop others thinking that we’re complete psychopaths
Being treated differently – You don’t want socialising events with friends or family to be mired by people thinking that they need to treat you with kid gloves. Ironically noisy environments, where there’s plenty of background noise, don’t tend to be a big problem for most misophones. That’s one of the reasons why so many of us cite family, loved ones and colleagues as our worst triggers. They are the people we spend the most time with in otherwise quiet surroundings, which is when the triggers really stand out
Making your friends/family feel uncomfortable – I think this can be avoided if explained the right way, but there’s a danger that the knowledge of your misophonia will put some people on edge and cause them to behave unnaturally when they’re around you. Them knowing you have misophonia won’t change the fact you have misophonia so in some cases it’s worth questioning whether this person knowing is positive for either of you
I’ve personally found it more helpful to talk to other people with misophonia who understand what it’s like, than a family member or friend who doesn’t – and who may actually feel worse for knowing.
That’s why I would rather focus on raising awareness about the condition through research and the pooling of knowledge for from our great misophonic, genius minds.
But these are just my experiences and I’d love to know what you think.
How have you dealt with this issue and what approaches have (and haven’t) worked for you. Do you think the benefits outweigh the negatives?