Misophonia affects nearly 1 in 5 of us

The moment I knew I had a problem was losing my footing in a slick of Dettol on the kitchen floor, tumbling in a balletic, over-the-top cartoon slip, then crashing down on top of my laptop with a piledriver to please the most ardent WWE aficionado.

Why, you may ask, was there a Dettol slick on my kitchen floor?

In a word, flies. To my ears they possess the menace and volume of helicopter gunships. Think Apocalypse Now sans the Wagner and you have an approximation of the aural trauma they cause me. The very sound of them makes me want to kill. And my crazed pursuit of said evil winged filth, firing off a couple of pints of disinfectant to blow them out of the sky, had reduced my kitchen floor to the friction-levels of an ice rink. The upshot: an expensive injury to my laptop.

The culprit is misophonia. Otherwise known as selective sound sensitivity syndrome, or my personal favourite: “sound-rage.” And it’s surprisingly common.

For a large number of us (18% - nearly one in five of the UK population, according to a King’s College study) certain seemingly innocuous everyday sounds elicit a variety of extreme responses. For some (including me) that’s an inability to block out the annoyance, which morphs into a feral anger bordering on murderous. For others it’s anxiety, a feeling of being trapped, or feelings akin to PTSD. 

For many the symptoms start in childhood and can be triggered by breathing, chewing, crunching, finger tapping, lip smacking, pen clicking, slurping, sniffing, swallowing, typing on a keyboard, and whistling. It’s often only when these sounds are made by certain people that the fight or flight response is triggered. For me, the buzzing of a fly obliterates my ability to concentrate and I have to destroy the sounds before I can think about anything else.

When I was younger the sound of my mum chewing cereal made me have to leave the kitchen, sometimes the house. Or my dad’s breathing, wheezed by a 30-fag-a-day habit that made me feel violent in a way that involved kneecaps and hammers. If you’re thinking other psychological factors may be at play here, you’re probably right, but that’s for another article.

But whereas before the sound of my dad breathing would make me boil with rage in the back of the car, now it’s flies, distant and barely perceptible basslines (probably from living in too many rowdy shared houses) and the sound of owls when I’m trying to sleep.

With summer approaching, I’m in a constant battle between the desire to open the window to the beauty of a summer’s day (daytime birdsong doesn’t offend me in the least) and leaving the window closed to prevent the torment of invading flies.

So how exactly can we explain misophonia?

Dr Tom Graham, 44, originally from Nottingham but now based in St Albans, is a counselling psychologist specialising in cognitive behavioural therapy for anxiety disorders and misophonia. He contributed to the King’s College study and began treating misophonia sufferers in 2018.

“The metaphor we use is that within a pack of meerkats, there are certain meerkats called super-guards," he explains. "They are designated to be on the lookout, more tuned into environmental threats. They’re the ones up on their hind legs if they hear something and alert the rest of the pack. People with misophonia might be like the super-guard meerkats.”

He explained the sounds people tend to be bothered by could indicate some sort of environmental threat.

He added: “At a certain point of our evolutionary history it might have been a good idea to have people with this sensitivity as part of your tribe.

“In some ways, this is a kind of superpower.”

Not that this sort of hypersensitivity is often particularly useful these days, of course. Rather than being triggered by genuine threats, Dr Graham hyopthesises that one cause of misophonia may be that the sounds in question are linked to traumatic experiences.

Mental health activist John Junior (AKA The Duckman) has experienced misophonia since they were 12 years old. Originally from Wilmslow in Cheshire, The Duckman, 35, now lives in Manchester.

“It affects me in all sorts of ways,” they say. “Hearing ambulances, police cars. If people repeat words, I feel like my brain’s going to explode. It’s the most irritating thing in the world. It feels like something’s underneath your skin.” 

The Duckman also has complex PTSD from childhood trauma and OCD. They have to eat with kitchen tongs or “something bad will happen to me”.

In 2019 they started "John and Charlie's Journey" (Charlie is a stuffed duck toy, hence the Duckman sobriquet) to encourage people to talk about mental health and end the stigma. 

Their story even inspired a five-part documentary series in 2021: the BAFTA-nominated Hollyoaks IRL, which featured people who experience issues dealt with on the soap.

Dealing with misophonia is just one of the challenges The Duckman faces.

They wear £200 noise-cancelling headphones to walk down the street, and anxiety about the potential for sounds means they avoid certain places. 

There have been times when it has got the better of them in public.

“I have thrown a chicken nugget at someone before in McDonald’s," they admit. "They were making slurping noises. I’m not proud of it. I’m not a violent person but something switched in my head. I bought him some food so it was fine , but it’s not the point, is it?”

I can sympathise. In misophonic rage I once threw a battery at a snoring guy’s chest on an overnight bus in Argentina in 2007.

The Duckman listens to soothing frequency music to stay calm, or the sounds of waterfalls and rain. 

They even make ASMR for themself comprising tapping or glass noises. The sounds of their own chewing works too.

“If I’m chewing, that’s okay,"they explain. "If anyone else is chewing, oh my God, I actually want to kill you.”

But sometimes that doesn’t work.

It’s the repetition of words or noises that can cause them to spiral.

“If it’s happening multiple times a day it gets to you,"they explain. "You feel trapped and isolated. It feels like you’re going down a rabbit hole.

“It can cause self-harm. People don’t talk about that.

“You’re not in control of your own emotions, so when you do that (self-harm), it’s horrible, but you feel in control because you can stop at any time.”

They say they have sought help from medical professionals, but as misophonia is not yet a designated disorder, it’s seen more as a symptom of other mental health problems. Their experiences are often described as a ‘sensory overload condition’.

Dr Graham acknowledges that getting help is hard. The NHS service in Oxford where he works is the only NHS service in the country that offers specialist treatment.

For Phil Wilkinson, a man in his mid fifties from Birmingham, his experiences also started in childhood, though like me he only recently learned the term ‘misophonia’.

“As a child I can picture the dinner table and the sound made by my dad’s dentures whilst eating,” he explains.

To this day, Phil is troubled by the sounds of chewing and swallowing.

“Feelings of anger, irritation and stress result, alongside guilt and shame in myself for my sensitivity," he admits.

“Unsurprisingly I prefer eating alone.”

He says he invariably plays the radio or television during meals to drown out the sound of his wife eating. 

Phil has been out of work as a consequence of issues stemming from his late-diagnosed autism and said he wasn’t aware misophonia could be treated. 

He said: “As someone who has long term experience of anxiety and depression and neurodivergent issues, I’m all too aware of how limited services are and wouldn’t expect to receive any support.” 

Dr Graham is familiar with stories like these, explaining how common it is to be triggered by those closest to you.

He adds: “The first thing you want to do is move away from the sound to withdraw. I hear again and again how isolating it is because it’'s not something others can easily understand.”

He describes parents coming to see him who are triggered by noises their small children make. They’re desperate to find a way to deal with it, not least before the child can pick up on it and has a deadly weapon to wind up their mum or dad.

Do people with misophonia always have other mental health problems?

The King’s College London study (of which Dr Graham was a part) states:

“Researchers collected data on levels of depression and anxiety in the sample and found low associations with the severity of misophonia, supporting the proposal that misophonia is a standalone condition and not part of other disorders.”

Dr Graham says he sees people with comorbidities, or multiple disorders, but that it’s certainly possible to only suffer from sound sensitivity.

“It's pretty early in the research to get accurate estimates of comorbidities,” he adds.

To my mind, misophonia symptoms seem similar to how OCD causes people to fixate, and Dr Graham agrees. Indeed he and his colleagues used ideas from OCD treatment to understand misophonia. 

“But misophonia is very much its own standalone problem,” he clarifies.

The consensus definition 

In 2022, a study came up with the consensus definition. 

It stated that: “Misophonia is a disorder of decreased tolerance to specific sounds or their associated stimuli.”

But there is not universal agreement, hence it’s not a recognised disorder warranting inclusion in the DSM-5, or Diagnostic and Statistical Manual of Mental Disorders, the go-to reference book.

Dr Jane Gregory led the KCL study and is arguably the UK’s leading expert on misophonia. In her book, Sounds Like Misophonia, she writes that she’s conflicted about the term disorder. She agrees such a classification could help with recognition for furthering research and make clear many people’s suffering would fit the concept of a disorder. Others may feel they don’t ‘suffer enough’ to have a disorder and the term alone is enough to validate their experiences.

Certainly when I discovered  the term “misophonia'', it was a real revelation. Finally I had something that explained my experiences. Whether it gets categorised as a disorder is immaterial to me, but my misophonia is probably milder than it is for others.

For Dr Graham, the priority is helping people rather than getting bogged down in classification.

Guess that sniff

Dr Graham's approach is to try to help people feel differently about the sounds troubling them. He emphasises this is not an exposure-based approach where people are forced to listen to sounds until they get used to them.

“We know that doesn't work," he says. "They just hate the sound even more, and it makes them more and more distressed.” 

So his approach is all about trying to give an alternative meaning to the sound, such as for someone who is triggered by sniffing.   

He explains: “I’ll say, ‘I'm going to do a few sniffs, I want you to rate what that's like for you, in terms of how it makes you feel.’

“Somebody might say, ‘Well, that makes me feel that nine out of 10 disgusted, and eight out of 10 a sense of violation.’”

Now Dr Graham introduces a game called Guess That Sniff.

He tells his patients: “I'm going to sniff a song, and you're going to sniff the song back to me and we're going to see what that does.”

After that, they again take some ratings.

His patient might say: ”Well, my disgust rating didn't change much. But because we were doing something different with the sound I didn't have that same sense of anger and violation. It was more like a two or three, and parts of that were actually kind of funny and amusing.”

“Of course,” Dr Graham makes clear, “you're not going to change the problem in one round of Guess That Sniff.”

I must admit, I can’t imagine coming to terms with or understanding fly sounds anew.  Even as I write this I am squirting my trusty Dettol when I hear that intrusive buzz. For a while I used books as a weapon, literary missiles hurled from range. When I got sick of the blood smears and ruined spines, I hit on the Dettol and never looked back. Though when I've sprayed so much of the stuff the kitchen floor is slick with spray, I can only pray I don’t lose my footing again and have to head back to the laptop guy to fix yet another hard drive.