Levi Tebbutt was seven years when, one night at dinner, his mother’s eating noises had started to rankle. His heartbeat quickened. He felt trapped. And then, snappily, he mimicked the cursed sounds and blurted out that he’d had enough of his mother’s loud breathing and her endless crunch, crunch, crunch. This didn’t go down brilliantly. 13 years on, and Tebbutt’s problem has never really gone away. Mealtimes at home are still quite painful. “Initially, I didn’t like the eating noises some of my family were making,” he says. “Over time, I gradually became increasingly stressed about the noises and it built up to a point where I was ready to run away the second I saw someone preparing food.” That first fiery outburst had signalled the onset, he now believes, of a condition known as "misophonia". Translated literally from the Greek as "hatred of sound", this term doesn’t really do justice to the true complexity of the condition it describes. After all, there are sounds we all hate, sounds that distract us almost universally – the scratching of a nail down a blackboard, for example. For Tebbutt and other misophonia sufferers, however – who have been labelled "misophones" – certain everyday sounds can quite easily trigger an episode of panic or rage. Beyond finding these repetitive, often bodily sounds a tiny bit gross, misophones are seized with anxiety when they hear them. In the moment, they can think of nothing else. Tebbutt’s triggers now include slurping, lip smacking and wheezing noises too. “In practice, this means I need other noises to drown [them] out,” he says, before describing his typical fight-or-flight response, which normally kicks in within a couple of milliseconds of hearing any one of these sounds. “Inside my head, I feel angry. I get an adrenaline rush. Half of me wants to run away while the other wants to scream. It’s extremely stressful and I absolutely cannot sit there and do nothing while a triggering noise is made – whatever it is, I have to respond somehow.” Now a student, Tebbutt wears earphones or hoodies to avoid the sight or sound of other people eating. Although the term "misophonia" was coined back in 2001, the condition has only really come to public attention in the past few years, which is partly down to an article published in the New York Times in 2011. Since then, legions of self-diagnosed misophones have thronged to dedicated Facebook and Yahoo support groups, Reddit, and various makeshift forums and research-collation sites like Allergic To Sound. The prevailing tone across these pages is one of simple surprise that fellow sufferers actually exist. Because misophonia is yet to gain substantial ground in the medical community, most sufferers were used to their problem well before even knowing there was a word for it. For this reason, one Australian researcher has gone as far as describing the phenomenon – our awareness of which is very much driven by google searches and throwaway memes as an "internet disorder."
Tom’s initial triggers were the sounds of his family eating at the kitchen table
Take Tom*, the founder of Allergic to Sound, which is an online portal for others to learn to cope with misophonia. Like Tebbutt, Tom’s initial triggers were the sounds of his family eating at the kitchen table. “I first found out the term ‘misophonia’ existed in 2014,” he tells me. “I couldn’t believe it. Other people were describing the exact same feelings and scenarios. I felt elated. For more than 20 years I thought that I had this bizarre thing wrong with me, so it was exciting to know that there were others out there. Ever since, I’ve had an overwhelming desire to find out what causes it and the science behind it.” So, what do we know about the science behind it? Not nearly enough. The area is drastically under-researched and, as a result, poorly understood. So while you may hear about research declaring that 20% of us suffer from misophonia, that it apparently sets in without fault at around 8-10 years old, and that it might correlate with other mental health problems such as OCD, depression and PTSD, there’s no real, reliable evidence to back any of this up. What we do know, however, is that it has a proved physiological basis and, as the New York Times have reported, “early data suggests a hyper-connectivity between the auditory and the limbic system, a part of the brain responsible for generating emotions.” One of the leading researchers in the area is psychologist Dr Jennifer Jo Braut, who is a misophonia sufferer herself and a mother of triplets, one of whom is also a misophone. She’s the founder of the IMRN (the International Misophonia Research Network) and the research director behind quarterly magazine, Misophonia International. Brout says one of the main obstacles for researchers is that it’s not listed in the American Psychiatric Association’s DSM-5, the fabled bible of mental illness diagnosis. One day, she hopes this might change. “I’m not very happy about the diagnostic system that we have in place,” she explains. “I had to diagnose my daughter myself. I diagnosed myself. I don’t see what else people can do. I was in the team trying to get Sensory Processing Disorder into the DSM-5 for ten years. You can’t get anything in or out. It’s such a politicised process, that we’re all left with these disorders and conditions, where we not validated and we can’t get research funding.”
Just functioning normally at school or work can be incredibly difficult
The causes of misophonia are currently unknown and, despite what some scam sites might have you believe, Allergic to Sound say there are no cures. Brout and her team are currently looking into possible medications and physiological therapies, but for the moment, sufferers – for whom just functioning normally at school or work can be incredibly difficult – must develop their own coping mechanisms. These might involve simply leaving the room, wearing noise-cancelling headphones, or making their own noises to mask the triggers. Coping with misophonia can, I’m told, feel as impossible for close family members and friends as the sufferers themselves. Often it’s loved ones, specifically, who trigger misophones, not anyone else. This can lead to accusations of double standards. “They don’t seem to understand that this is no personal attack against them, so seeing that I don’t run from strangers all the time is confusing to them,” says Tebbutt. Tom, for his part, has some simple advice: “Remember that the misophonia is not about you [friends and family], even if it may seem like it. It’s purely about the way your friend, partner or loved one processes the world. They have no control over it. Getting angry or upset with them will just make things worse, so try to remain calm.” More generally, Tom thinks that society as a whole should talk about the condition in a more positive light. “I don’t want misophonia to be a disorder which is stigmatised and thought of solely as a disability,” he says. “For centuries we thought people who saw colours and tasted sounds were "mad" but now synaesthesia is widely accepted. I think [misophonia] gives us some unique creative abilities.” “I think it does make me a lot more perceptive,” adds Tebbutt, considering the positives. “[It] helps me to pick up on things going on around me. I’m not sure if I have really gained anything, although if I ever want to channel anger or frustration when speaking in front of others, I can easily conjure up those emotions by thinking about the triggers.” When burdened with such a rare and misunderstood condition, it appears thinking about the benefits – and discussing them openly and exhaustively online – is one of the best actions misophones can take. More than anything, it’s reassuring to know you’re not alone. *Tom didn’t wish to disclose his surname.