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…