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Misophonia: Living in a nightmare

It was at roughly the age of 10 that I started noticing that the noises that others made had really started to upset me. Not just irritation, I felt an overwhelming dislike, a severe distaste for certain sounds, particularly those related to eating. If someone was a somewhat sloppy eater, mouth hanging open, slapping noises being emitted, I felt panicked, a need to run away, and utter, utter revulsion. This is not a feeling that has diminished with time. It has only grown worse.

For years I have felt like a freak. Completely isolating myself at mealtimes has become survival. Whilst still living at home, I'd frequently remove myself to my bedroom to eat, with the usual excuse of wanting to watch something particular on T.V., or having homework that needed completing. Better this than sitting, tortured, trying not to cry or scream at my parents, who were simply minding their own business and enjoying their food. Now, I sit in the living room I share with my partner, wearing earplugs so that I don't have to hear him scrapping his cutlery on his plate, or hear his overly loud breathing as he eats. Not that he is at fault. This is entirely my creation, a faulty wiring in my brain that causes me to want to run, screaming for the hills any time someone makes one of my 'trigger' sounds. Christmas is especially testing. I can't simply shove my ear plugs or headphones in, yet I'm boxed in at the table, surrounded by various family members, who I love dearly, but during this yearly meal, I'd happily lock in a separate room. Hence the reason why I now nab the chair nearest to my Grandad every year. He also suffers, so we carefully negotiate our food so as not to drive the other one completely round the twist.

Misophonia is a relatively new diagnosis, literally translating into a hatred of sound. For me this is somewhat misleading. I suffer adverse reactions to certain movements, smells, facial expressions... the list continues. It is suggested that the wiring in a miso sufferer's brain isn't quite right. Something has gone awry in there, meaning that we simply cannot tolerate certain actions. Trying to explain this to a non-sufferer is like trying to describe the colour blue to a person who has never had sight. People can be rude and dismissive, not considering how debilitating this can be. Others try to empathise, with a sympathetic "oh I understand, I find it so irritating when...". But this is way beyond irritation. This is gut-wrenching, fight-or-flight inducing fear, a need to get away, a desperate scrambling to let out all of the sudden pent-up, indescribable anger, aggression, rage. I have made my own legs bleed, digging my finger-nails in so deep, to prevent having an outburst. I've bitten the inside of my mouth to shreds, trying to stop myself pointing out another person's bad eating habits. I have screamed blue murder at my boyfriend to just stop cracking his knuckles. To simply describe it as an irritation doesn't do this condition justice.

It has only been in the last few months that I discovered my situation had a name, let alone was a condition. A work mate of mine looked up my particular symptoms and gave me the name of the beast on my back. The relief at knowing that I'm not insane, that I'm not making it up, but most importantly, that I'm not alone, has been overwhelming. I can't thank my friend enough for giving me the opportunity to identify what has been terrorizing me for more than half my life.

I started doing my research, and found that, well, there isn't that much information out there to share. The USA seems to be producing the most information about the condition, but as of yet, it's still pretty misunderstood. I found a self-diagnosis chart, describing the various symptoms in stages. If you have all the symptoms at stage 1, move to stage 2. If you have all the symptoms at 2 you move on to 3, and so on. Starting at mild irritation at certain sounds (stage 1), the list climbs all the way to stage 10. Having calculated the symptoms, I currently reside at stage 9 (resorting to hurting yourself to relieve your anger). I've stopped short of stage 10, never having physically attacked or hurt the person causing my trigger.

Miso sufferers respond to certain 'triggers'. What you react to is entirely unique to you. I was lucky enough to find a UK support group on facebook (although many of its followers are from all over the world. We're just happy to know each other, regardless of geography). It's been truly eye-opening to hear the stories of others, to learn what triggers we have in common, to share what is upsetting our day with each other, a therapeutic endeavor that has got me through more than one bad day. As mentioned before, I really can't stand any oral noises, or the sound people make when they crack knuckles or joints. But others in my group hate the sound of newspapers rustling, heavy breathing, keyboard tapping. We also can be triggered by certain movements. I personally hate sudden, jolting movements, or really repetitive actions. I have no explanation that I can give to you. I just do.

Don't underestimate just how mind-numbingly awful this condition can be. I avoid certain activities with certain people - meals with certain friends for example. I dread being around particular people for more than a short amount of time, because I know that they'll trigger me doing something that they aren't even aware of. Public transport is a nightmare. Going to the cinema was out of the question until I bought my earplugs. Just walking down a street can result in an almighty attack, having to listen to someone's ridiculously loud music, or the drilling of roadworks, car horns beeping, babies crying. It is debilitating and painful. Sufferers easily slip into depression, or isolation. It can lead to wider problems. It can ruin friendships, relationships, work, leisure. The worst thing for me is the guilt. I feel so guilty all of the time. People that know me, that know I have this, tiptoe on eggshells around me. My 6 year old cousin will leave the room if she is with me and wants to eat crisps because she doesn't want to upset me. It breaks my heart every time she does it. I've been incredibly rude and upsetting to people that now belong in my past. If I could, I would apologise from the bottom of my heart, and try to explain, I wasn't trying to be mean, I just didn't know what was wrong. My boyfriend carefully plans what he can eat around me. He'll stand in the kitchen to avoid triggering me. This bloody condition doesn't just control me, it affects the people I love. And it's all my fault.

I posted to my support group, letting them know that I was planning on writing this, and asked if anyone wanted me to share their feelings. I'm going to share one of them with you now. I'm waiting on the responses of a few more, I'll be adding them as and when they arrive. Over to Rod:


My Misophonia began around the age of 10 or 11 I think in the early 1980s. My first triggers were my parents eating noisily - real sloppy sounding chomping that used to get right under my skin. I would avoid eating with them as much as possible, often leaving the dinner table early, saying I was full, which I wasn’t. At first I don’t remember seeing red like I would nowadays - it was more of a revulsion and urge to get away from it. As I got a bit older, my teens were full of arguments with my parents about them eating noisily (and other things!) By this time I was never eating with them. This is when I started first noticing other triggers too, again from my parents. My parents talking with their mouths full, my Dad biting his nails, whistling, singing (when I was in bed, trying to go to sleep at night, often they’d have a late supper of tea and toast - the toast smell started really bothering me!), my Mum’s gross habits, bringing up phlegm whilst eating and spitting it into a tissue, my Mum brushing her teeth and spitting into the sink. And in my teens I began to be triggered by non-family too - friends, friends parents, complete strangers, and things on TV. I remember thinking from a young age that I was a little strange and different from other people, and the Misophonia (though I had no clue it was an actual ‘thing’ back then) just confirmed that for me.


When I was 19 I started dating the girl who’d become my wife and start a family with. By the time I was 21 we had a daughter and a son on the way. I went back to college and then went to university. A second son born in 1996. My degree took me up to 1998. The 1990s were a bit of a blur for me and I do not really remember Misophonia being such an issue - I’m sure it was there, certainly I remember quite early on in our relationship my wife’s snoring and weird ‘clicking’ sound she makes (like a tap dripping!) gave me many a sleepless night and caused us eventually to sleep separately, which we still do to this day... I also remember the neighbour’s DIY really affecting me too (at that time we had neighbours who seemed to be always doing something noisy involving sawing and hammering!) But perhaps because I was so busy and there was such a lot going on, maybe the Misophonia lessened somewhat. But my memory of the ‘90s is a bit fuzzy. During my degree I began suffering from depression, which got a lot worse after I finished, and I only worked for a short time after that before leaving the job due to ill health and becoming a ‘house-husband’, raising the children whilst my wife worked. My wife also suffered from depression, later diagnosed as bi-polar, and she has made several suicide attempts over the years, the most recent in 2010
In 2011 we moved again, but again ended up with bad neighbours which led to both my wife’s and my own depression worsening - it was in late 2011 I discovered the term Misophonia by absent-mindedly putting “eating noises disgust me” into Google just to see what I’d get back. I really don’t know why I didn’t think of doing that sooner - I had been able to go online from home since 1999. I suppose it was because I thought it was my own private Hell. But imagine my surprise! It was a massive relief to suddenly find that I was not alone, not a freak, and soon after that I joined the Misophonia group on Facebook.
Sometime around early 2000s I really noticed my Misophonia getting bad again and also trypophobia, a visual revulsion of certain patterns and textures. I had always also been a little OCD and I noticed that getting worse too - doing things a certain number of times and feeling restless and unsettled, like something bad was going to happen if I didn’t obey. During the mid 2000s we had a terrible experience with a private landlord who tricked us and we almost ended up homeless. Thankfully we didn’t, but the next house we lived in (which we had to accept) we had terrible neighbours and this led to me having anxiety and panic attacks as well as depression which really brought my life to a complete standstill. I had counselling, one-on-one CBT, and a variety of different meds till I found one that helped a bit. I gradually got better, started going to college again and started voluntary work. Sorry if that was a bit lengthy, I suppose I wanted to set the scene for you. My Misophonia is currently moderate to bad, has been for a long time now. I am triggered by the usual things I have already mentioned (including my parents when we see them (once or twice a week)) but lots of newer things. Bassy music, dogs barking, my cats washing themselves, my wife brushing her hair, cutlery scraping on plates, clattering of pots and pans, certain tones of voice (nasally ones are worst), sniffing, coughing, throat clearing, noisy cars and bikes... well, the list goes on and on. And the visual triggers are worse too - my wife takes a lot of different meds for various things - some of this makes her fidget uncontrollably, wiggling her fingers and toes, it is hell for me. She is very understanding but because she doesn’t realise she’s doing it, she’ll start it up again sometimes just seconds after apologising and stopping it. I cannot stand people eating around me whilst I am seated and they are standing. My tolerance levels are a lot lower than they used to be. I often resort to wearing earphones and listening to music or white noise. If someone sits behind me on the bus and is fidgeting or eating or breathing heavily, the earphones have to go in. Little noises in the night bother me and I have to fall asleep listening to music.
I think the very worst thing about this condition though (apart from the triggers themselves) is the awkwardness - how absurd it sounds when you try to explain it to others - how you feel you couldn’t even begin to explain it. How quickly people dismiss it as a silly quirk. It’s easier to just run away, put earphones in to mask triggers - there’s such a stigma. That is the worst thing for me, even though I no longer feel like such a freak and alone in having this, the awful awkwardness remains.
For me, it is the whole thing - the depression, OCD, Misophonia, trypophobia, and my sensitivity (which I’m sorry, I haven’t really talked about) - I am extremely sensitive and am easily moved by beautiful music, stories, and just thinking and life and death. I feel like an misplaced person in this world. I feel like I belong in some other world, like a square shape trying to fit in a round hole. The whole thing is just so overwhelmingly unbearable and I just do not know how to live. I am intelligent enough to reason things through of course and I have never quite been suicidal myself, but I can easily see how Misophonia and other conditions can make people feel that way. I avoid triggers like the plague, which makes it very difficult to operate in the world. I am so lucky I have an understanding wife and (now adult) children who love me - that is what keeps me here. When I really cannot avoid triggers I either become increasingly agitated till I have to just flee or I explode in a rage. This has only happened a few times because I usually get to flee or avoid. But when it has happened, and one time was my Mum, it has been ugly and I have felt so foolish afterwards. I have tried to talk to my parents about it but Dad is of the generation that doesn’t really believe in anything like that (pull yer socks up and get on with it, is his attitude) and Mum is just too wrapped up in herself. Never mind. I can honestly say I do not know what the future holds for me - I fear, just more of the same - it feels like I am just marking time. This condition, which I tried to get help for but the NHS in my area were no use (“you can un-learn this behaviour with exposure therapy” - I tried, it was awful!) and I cannot afford to go private. So it all feels rather hopeless. I am 43 and have worked very little in my life, excluding voluntary work, and even that I am not doing right now (another story though!) I cannot see how I could tolerate working with other people. I read the stories people tell in the Facebook group and wonder how I would cope in that situation, and I know I wouldn’t.
Rod


I don't pretend to be an expert about this, I'm still learning about myself with misophonia. But there are so many of us out there, you probably know one of us already. If you do, if they are brave enough to confide in you, be kind. Try to be understanding, even if you can't fully comprehend what we go through. Most of the time, we can't either. Don't dismiss us, or the condition. We work so hard to control ourselves so that we don't affect others negatively, please do the same for us.

To my friends in the support group, thank you for being my counselors. Thank you for being my friends. Thanks for not telling me I'm crazy, and for making me feel almost normal! I promise I'll try and do the same for you.

12th September
Another of my fellow sufferers was kind enough to contribute to this page. This is the first time Louisa has actively written about her experiences with misophonia, it's incredibly eye-opening, and beautifully frank. Here's Louisa's experiences in her own words.


Misophonia and me
It’s a bright Saturday afternoon in September. The sun is shining in a last-ditch attempt to boost the population’s vitamin D levels before winter sets in. I’ve been for a lovely long walk by the sea, and am now back home, in tears, noise-cancelling headphones plugged in to try and reduce the sound of my neighbour’s excessively loud music. This is one of many things that acts as a trigger for the misophonia I have been living with for at least thirty years, if not longer (I can’t remember exactly when it began, but think it was when I was in my teens). Other triggers include people eating, smacking their lips, sniffing, biting their nails or putting their fingers in their mouths, dogs eating and drinking and washing themselves, people’s voices, ringtones, loud music that I have not chosen to listen to, and many, many other things. Different triggers cause different reactions – one or a mixture of rage, panic, disgust, and anger.
I think the first things that triggered me were my brother and sister biting their nails, and eating, and my mum banging a cereal bowl while she ate, sometimes in the middle of the night. I remember asking them not to do these things, but of course it didn’t make a difference. Over the years I have struggled with my children eating and sniffing, and boyfriends’ eating habits. I thought I was a freak, and didn’t tell people I had these problems. I would simply ask my kids to ‘eat nicely’, and found it very difficult when they became teenagers and would eat whenever they felt like it, instead of at set meal times, which I found easier. Then I met my husband, who, unfortunately is the worst trigger I’ve ever had. I really struggle if we have to eat together, and try and avoid this as much as possible. When he drinks I put my fingers in my ears to avoid having to hear the sound of his open-mouthed drinking, and the way he swishes every mouthful around his mouth before swallowing it. He also has a tendency to smack his lips together and chew long after he’s finished eating. There are visual triggers as well as noise-related ones. I remember getting very distressed when we were eating out, and his sleeve was draped in his steak. I asked him to take his sleeve out of his dinner, and he got quite irritated with me. Before we got married, I did ask myself if I would be able to cope with his eating for the rest of my life. But I decided it would be ridiculous not to marry someone you love because of the way they eat. It’s not easy for either of us, though.
I had no idea what I was experiencing was part of an actual condition until I googled ‘hatred of mouth noises.’ It was clear that I had misophonia, and severely. It seems to have got worse as I have got older, although I have become better at managing difficult situations with earplugs, headphones and avoidance, and I have started to tell more people that I have it. I hope more and more people will become aware of it, and people with the condition will receive more support. When I started talking about it, I discovered that some of my friends and family also experience it on different levels.  
So how does it affect my life? Every minute of every day is a struggle for me, and that is not an exaggeration. I have anxiety and trouble sleeping, and I believe they are all linked. If I sit on a train and people are talking too loudly, or if there is a particularly annoying (supposedly bird-like) ring tone going off every few minutes, I will feel incredibly distressed. If I am in the cinema and – even with earplugs – I can hear people, including my husband, crunching their popcorn, it will spoil the film for me. I’ve recently considered giving up going, it affects me so badly. I don’t feel safe in my own home, because of the problem with my current neighbours, and I feel trapped as we can’t move for a while yet. So I am constantly on edge, wondering when their noise – loud talking and shouting outside, building work, loud music – is going to start and when it will end. I try to avoid going to people’s houses if they have dogs, as the sound of them washing their private parts makes me feel sick, repulsed, and to want to kick them. I often have violent thoughts about whoever is triggering me, and do the thing that apparently all misophonics do, and glare at the perpetrator, as though that might resolve the problem. It doesn’t, sadly. 
I have wished for a low-level deafness, not total deafness as there are a few sounds I like – music of my choosing, the sea, the rain hitting a window, the wind rustling the trees, the sound of my granddaughter’s voice – but just enough to turn the world’s volume down, to take the edge off. But my ears, unlike my eyes, still appear to be going strong, and I don’t really want to lose my hearing. Apart from anything else, if I don’t hear someone come in, it makes me jump out of my skin. I’ve also wished there could be an operation to remove the part of my brain that makes me like this: neurotic, intolerant, on the edge of sanity at times. I long for a house in the middle of a field, full of light and peace. I long for silence in a world that is filled with noise. Maybe one day my dream house may become a reality. For now, I have to get through each day, trying to minimise my levels of distress as best as I can.
Louisa Adjoa Parker

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