Misophonia: when silence is golden

From cutlery scarping the bottom of a plate to nails being dragged down a chalkboard, we all have sounds that make us cringe. But when does your average pet-peeve become a life changing illness? Shannon Cooke talks to someone who knows...

Does it bother you when someone slurps a drink? Chews with their mouth open? Grinds their teeth?

Most of us might think the person concerned needs to learn some manners, then carry on regardless. Not Amit Zahavi. Her palms begin to sweat, her heart begins to race and her blood begins to boil.

“For me, hearing some everyday sounds is like walking down a street to suddenly find an angry lion waiting to chase you down,” she tells me. “Ready to eat you alive.”

Amit, who’s from Israel, has misophonia - literally translated as “a hatred of sound.” It is a relatively unknown and unexplored disorder that leaves its sufferer with no visible symptoms. However, under the surface it is constantly bubbling away, as I realised when Amit abruptly told her brother to “shut up” coughing.

Also known as sound sensitivity syndrome, the condition leads to sufferers developing ‘trigger’ noises that can cause them a lot of distress. Amit’s include, chewing, heavy breathing, keyboard tapping and other repetitive and body related sounds.

Hearing any of these day-to-day noises, the 21-year-old Tel Aviv University student is left stressed, anxious and on the verge of a breakdown. Although you wouldn’t expect it from someone with such a calm nature, it’s a case of fight or flight: “I either have to fight back tears, dig my nails into my palms and get away from the noise or confront whoever is making it.”

Before being officially diagnosed in June this year, Amit had self-diagnosed via the internet. “I remember reading the symptom list and ticking them off one-by-one,” she tells me via Skype, “I knew straight away that I had misophonia.” Her discovery came after years of being passed from doctor to doctor each as baffled as the next.

 “One doctor had the audacity to tell me it was my fault for hearing too well,” she says ruefully. Others also seemed “out of their depth,” wrongly labelling her with anxiety, hearing problems and even OCD. Misdiagnosis is something a lot of sufferers have to deal with. 

Amit’s official diagnosis came from Dr Talia Mark, an audiologist and one of only two specialists in Israel able to perform tinnitus retraining therapy - a treatment said to help some sufferers. Amit, who’s from Holon, just south of Tel Aviv, first came across Dr Mark via a health article about hyperacusis, a condition related to misophonia.

She plucked up the courage to arrange an appointment with her doctor. “I had almost given up on getting a diagnosis at this point, but something told me I should give it a try. When she told me how she knew all about misophonia, I burst into tears.”

With much uncertainty about whether the condition is psychological or neurological and why its onset is in the teenage years, there was little Dr Mark could tell her that she didn’t already know. However, together they came up with an idea to combat Amit’s triggers with white-noise emitting hearing aids: “The different levels can block out everything from a sniff to a crowd full of people. They’ve changed my life.”

"I feel like I'm in a minefield... one step away from exploding."

 Yet there are some downfalls. A computer science and linguistics student, Amit often finds herself in situations where she is surrounded by hundreds of people at a time. She’s had numerous panic attacks in class and sometimes has to be dragged outside by her friends. “I feel like I’m in a minefield, I’m always one step away from exploding. It only takes one person to trigger me and I’m sent into meltdown and I feel like the world is watching.”

Despite having turned to self-harm and thoughts of suicide, Amit hasn’t received much help from people simply because there is nothing they can do. However, her university allows her to take exams in a separate room to lower the chance of her being triggered.

Due to a lack of interest, little research and not much funding, sufferers are often misunderstood. “I’m sure most people just think I’m mad,” Amit laughs, “My family still don’t take it seriously even though my doctor wrote them an in-depth letter about my condition and what they could do to help.”

American psychologist Dr Jennifer Brout has over 20 years’ experience in researching and living with misophonia, as does her partner Shaylynn Hayes. Together they co-edit Misophonia International, a magazine and website that focuses on highlighting research and coping strategies. They say that until misophonia becomes a well-known condition, its sufferers won’t be taken seriously.

“Medical programmes are already strained. It’s hard enough to get funding for disorders that are already branded as legitimate and notable.” says Shaylynn.

“It also doesn’t help that most misophonia sufferers feel ashamed of their condition and don’t get much support,” adds Dr Brout, “In fact some don’t even know what they have. All this paired with a society that is based on its own problems has left little room for misophonia to get noticed.”

Misophonia sufferers haven’t got much to look forward when it comes to understanding their illness. A cure looks unlikely any time soon and increasing awareness remains an excruciating task. But Amit remains optimistic, believing that the way forward is for more sufferers to talk about their condition. “Tell your friends, tell your family and tell your doctor. In fact, tell everyone! Scream it from the rooftops, make a blog, do a presentation. The only way we’ll raise awareness and beat this condition is by sharing our stories with the world.”