At twelve-years-old I thought I was going mad.
I couldn’t deal with small and quiet aural and visual stimuli.
It took many years to discover Misophonia is real and I wasn’t crazy.
Misophonia, often known as 4S or SSSS (Selective Sound Sensitivity Syndrome), is a very real and restrictive disorder for those who suffer and those close to them. I’ve written before about being a Highly Sensitive Person HSP and promised to post about Misophonia.
As a child your quirks are just that, quirks, then you recognise differences between you and those about you. I struggled with noises and visual disturbances.
I liked quiet. My bedroom was at the far end of our house with a corridor, bathroom and spare bedroom between myself and the rest of my family. My room was my place of solitude. Though my inability to deal with small noises was apparent earlier the first major problem aired when the neighbours, an elderly couple with a penchant for opera, played music loud and I could hear it through my bedroom wall. The emotions that overwhelmed me were irrational, overwrought and internally violent. I was a placid child, so any violence got absorbed and/or released upon myself. My place of safety was violated with that tinny, muffled sound that emanated through my walls and I had no idea how to deal with it.
At twelve, my grandfather came to live with us. He was already in his late eighties and difficult, but he needed care. I had a chair on the edge of the living room by the window and I could shield myself from others in the room. I had a problem with my mother’s twiddling thumbs, or things I could see out of the corner of my eye. I was already moving books on the bookshelf, so that light and dark spines did not alternate or stand out. My grandfather’s chair was put beside mine, and his legs when crossed left his foot dangling in front of the television. When he bobbed his foot I felt like I would go crazy. My adrenalin surged, my anxiety hit the roof and I wanted to scream and cry. Another safe place was gone.
I had no idea what was wrong with me.
It wasn’t until many, many years later that a name was put to my condition. Misophonia. It covered everything that drove me crazy. The sound of people eating (I cannot listen to or be with people eating unless I’m eating myself), snoring, breathing heavily, music from other peoples’ headphones, tapping fingers, cracking knuckles, whistling and chewing gum (both make me want to strangle people), humming, fingers tapping on a keyboard or screen, and the clatter of cutlery all trigger my fight or flight anxiety response. Add to that visual stimuli like the avoidance of lights reflecting on picture frames, fluff and lint on the floor, anything bright that catches and distracts me and you have a real problem.
My flight response is my default, as confrontation is something that triggers other major anxiety responses such as self-harm. I respond to misophonia with trigger levels of 6 to 10, which you can read about in this Misophonia activation scale *, but my main coping strategy is to eradicate the trigger or remove myself from the area.
Misophonia, also known as selective sound sensitivity syndrome, is a newly-diagnosed neuro-otological disorder that affects children and adults. Sufferers can feel immediate and intense rage at others’ eating and breathing sounds, about which they become hyper-aware and obsessed, sometimes with an ability to recall trigger incidents years after the event. The condition often sets off a “fight or flight” panic reaction in the sufferer and has been responsible for ruining relationships, breaking up families and leaving those most acutely affected suicidal. *
When a person with misophonia is exposed to a sound in their trigger set, it results in an immediate negative emotional response. This response can range from moderate discomfort to acute annoyance or go all the way up to full-fledged rage and panic. **
To help a non-affected person understand the impact misophonia has on someone with the disorder, they might be asked to imagine how they feel and react when they hear the sound of fingernails being scraped down a chalk board. Most people dislike this sound and will probably ask the person to stop! However, this example falls short of reaching the intensity a misophonia sufferer experiences. **
I was particularly relieved to know I wasn’t the only one, and have since found many friends with the same disorder. You know who you are! I was also relieved to find my visual disturbances were also part of this: Some are also affected by visual stimuli, such as repetitive foot or body movements, fidgeting, or movement they observe out of the corners of their eyes. ***
It’s good for my family to know I’m not mad, and that the actions/noises that trigger me so much are not their fault. It doesn’t make it any easier to live with, and I know it frustrates my poor husband hugely, but it does validate my condition.
There are treatments, which I’ve never asked for, as I can’t imagine having to explain it to my Dr – it seems so trivial compared to many other illnesses and diseases. The main treatment is CBT Cognitive Behavioural Therapy, and I’ve never been able to get that for my anxiety or depression, so I can’t imagine it being available for misophonia!
So for now, I cope and avoid triggers. Many people suffer mildly from misophonia-like symptoms, but for those of you who know the true reality of this disorder – how do you deal with it? And how serious is its presence in your life?
This post has been particularly difficult to write, but this page for Sufferers at MisophoniaUK has been particularly helpful to me, even as far as bringing me to tears as I realise some of my unwanted symptoms are quite normal. I hope it helps you too.
Please check out these amazing pictures of Mental illnesses as Monsters by Toby Allen and scroll down to Misophonia…
*** Wiki Misophonia
Thank you so much for posting this. i think that I may be on your wave length as yes, certain sounds can make me go wild inside myself. Also my wife is badly affected by sounds, light and sometimes repetitive movements.
I feel for you both as I really understand x
I had no idea and I feel for you.
My daughter has complained about people eating, breathing etc. She generally gets up and leaves the room. I didn’t know it wasn’t just a quirk she has. Thanks for this post.
I thought it was a quirk for many years, and I felt stupid about it. It was a relief to know it was real and other people had it too, Tess. My Grandfather living with us was tough for me, he also had bad asthma and his breathing drove me crazy, and I felt bad because it’s not something he could control. Hubby also has asthma, though not to the same extent, so I’ve grown more tolerant, but it’s still not easy. I hope this post has helped 🙂
Thank you. Yes, this post has helped. I had absolutely no idea about this condition. Informative post.
Must be a bit that you’re coping a little better now. ❤ ❤
Hey Lisa, as you know I suffer this but to a much lower level than you. I only reach Level 4 on most occasions, but I have experienced level 9 – usually on my own, and in particular when I was doing an audio typing file where the people speaking were eating a meal at the same time – sounds of chewing, swallowing, chinking, cutlery, and fluid being poured – I screamed a few times, threw my headphones off a couple of times, thumped the desk, until I could get passed the segment.
Yesterday morning my husband was making his cereal, much like ready brek, stirring it, and the sound, I just couldn’t handle it. And I had to say it out loud, that I couldn’t stand it. He then takes offense, he takes it personally, I repeated it was not his fault or to take it personally and it was just the sound. But he was still bad tempered about it.
I noticed mine when I went travelling, people carrying bottles of water: the sound of the sloshing, the pouring of them, the opening of them. I sit here and shudder at the memory. I have always had a problem with the sound of tea being poured from a teapot – even one I am pouring myelf. I am bothered by other sounds, but on a less scale, and they cover many of what you have said.
Light doesn’t affect me so much. But movement can. As I said before sometimes when my son is fidgetting or wiggling about too much at the table I can suddenly feel like I am about to vomit and move away from the table immediately. It’s happened a few times.
I mostly move away, but if I am unable I tend to clench my teeth, and rant in my head, sometimes under my breath. At home, I might say something, I might not. I have to be on a low tolerance day if I do say something. My best friend actually didn’t want me to meet his partner because he thought his partner was a noisy eater and I wouldn’t like it! LOL I actually didn’t notice at all, but my best friend remembered me snapping at him when I had a bad day when we were away together. I find PMS really weakens my resilience.
Great post. I am going to send a link to my husband! LOL
Oh, I hear you, Miranda! It’s also strange that some sounds affect us and others don’t. The ticking of a clock is actually comforting to me, yet I know someone who can’t deal with it. We all seem to have some similar sounds, eating, chewing, snoring etc that drive most misophonia sufferers crazy, and then some more individual sounds.
My mother used to whistle, but not real whistling, it was that whistle that’s really just blowing through your lips in a whisper sound…it made my spine tingle and jaw clench, still can’t deal with any kind of whistle now. And her twiddling thumbs – I’d sit there next to her with my hands up against my face to shield my view.
It’s all part of our HSP and a part I could do without, lol. I’m really lucky with my hubby, though I often tell him he’s breathing heavy and he sighs and raises his eyes heavenward…
And yes, the wrong time of the month and my patience, or coping ability, can reach nil!
And now the husband all of a sudden also hears his colleages make strange noises while eating… Something he never used to…. !! Hahahahaa… But very frustrating for the sufferers I understand !! So I had better try and take not of that !!
You’re right though, Ron, my hubby is much more aware of it now, but he’s also frustrated by my intolerance… I have to be aware no matter how much it annoys me, he’s not doing anything on purpose! Thanks for commenting 🙂
Good thing I live a zillion miles away. With my ASD, I’m prone to stimming (endless, repetitive motions), and I’m certain that would drive you bonkers. I literally can’t sit still. Literally. My knees bounce endlessly as I write this comment.
It is always good to learn something new. I was unaware of Misophonia. Now, I’m not.
I stim too, Mark, but I usually conceal it. As a result of my misophonia I’ve conditioned myself to do it undercover so to speak…difficult, but there you go, the things we condition ourselves with are as strange as the sounds/movements we find we are affected by! Again, strangely, some small repetitive movements I can deal with, some I can’t! I have a lot more tolerance for movement now than I did as a twelve-year-old… Thanks for being here, Mark 🙂
Thank you so much for this. I have ASD and misophonia and certain sounds/visual stimuli are enough to make me want to scream and scream.
Oddly enough, changing my diet to eliminate inflammatory foods has eased my sensitivity quite a bit, but I still have to retreat to the silence and solitude of my room rather often just to keep from going ballistic. 😉
Thanks for commenting, Cate, it’s a highly frustrating disorder, isn’t it? Being on the spectrum too can make everything more difficult, so I feel for you. x
Thanks for sharing this. I’ve never heard of it and yet it explains some of my own sensitivities though they are probably mild in comparison. I have a high sensitivity to sounds, particularly eating sounds. I can’t stand them and have to leave the room. My grown daughter has this too and that always seemed so odd to me that we would have the identical “quirk.” Anyway, I appreciate the new knowledge. I’m so glad you learned what was going on. That alone must be a relief. 🙂
Other people eating really is one of the sounds I find the most difficult, so I understand that one! A lot of creatives have strong sensitivites, so I’m finding many people who suffer with this to some degree. Thanks so much for stopping by x
I really didn’t know this is a ‘thing ‘. I’m legendary in my family for complaining about others’ eating and breathing sounds – I can’t bear it at times and if I fall asleep before my husband then hearing him breathe can be a problem for me. I try to remind myself that it’s wonderful to hear someone I love next to me.
I’m not affected to the same extent you describe, but identify, right back to being a child. I eat very slowly in an attempt not to make any sound. It seems liberating in a strange way to read that it’s just a different kind of normal.
You’ve actually described it really well, Julia. I have the same problem at night, and I’ve said the same thing to myself too! It’s made me hyper aware of any sounds I make, eating, breathing, or any twitching movements.
It really made a difference to me when I realised it had a name!
Oh yes! If I’ve heard you eating I have imagined you dead. Hell for us and hell for the people who have to live with us, You are NOT alone> xxx
…and the snoring…ha ha. We’ve had conversations about this!
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