Feb 2019 NECN

The literal meaning of "misophonia" is the hatred of sounds. If you've never heard of it, you are probably not alone. There's not a lot of medical research on it just yet. Despite that, there's a part of the population that is suffering from it. Misophonia is a condition where people have an intense physical reaction to sounds, commonly sounds made with the mouth, but not limited to that. These noises can be debilitating for some people.

Kelsea McAllister of Fitchburg, Massachusetts has self-diagnosed misophonia. She says it's something she's been dealing with all her life. The sounds that make her cringe include gum chewing, an assortment of tapping, mouth noises and typing. "I can't hear anything else. I can't think. I can't distract myself from it — once it's in my head, I can only hear that sound," said McAllister. "To others, they are like, 'I can't hear that at all,' and I'm like, 'It's so loud, how do you not hear that?’” McAllister admits it was more debilitating when she was younger. She wasn't able to sit down and enjoy family dinner because of chewing sounds. In college, living with two roommates was hard because the noise of typing on a keyboard would irritate her. She said it's been a lifelong journey learning how to deal with it. She said she never revealed to many people she had the problem, because she wasn't sure it was even a real thing. "In every workspace I have ever been in, I have established, 'OK, who are the loud chewers, who's always chewing gum in the meeting,' and I know those things, and I know to avoid them," said McAllister.

People who may have misophonia generally have a physical reaction like body temperature rising, heart racing, panic-like symptoms or even anger. "I know it's real to me and it's hard to understand in general because it sounds like it wouldn't be a thing, because it sounds crazy, even to someone who has it, for sure," said McAllister.

NBC10 Boston's Cassy Arsenault, who reported this story, also has self-diagnosed misophonia. People would tell her growing up that it wasn't a real thing not to be able to control an intense annoyance with sounds. With no real cure, she says it's been a lifelong struggle to cope.

Pediatric audiologist Kat Tribulski, the co-director of the Cochlear Implant Program at Tufts Medical Center, says as far as they know, there's nothing abnormal about the structure of someone's ear or how they hear if they believe they have misophonia. She says the medical community and the psychiatric community is split on how they think of misophonia. "It's more on the newer end in the medical community, so there's limited studies. Unfortunately, not a lot of it is backed by scientific research," said Tribulski. According to David Wolf, the chair of psychiatry at Newton Wellesley Hospital, the medical and psychiatric community may not be diagnosing people with it, but they are certainly helping people cope with it. "The symptoms of misophonia are very real. It is important to keep in mind the people who have these symptoms don't have control over them, so it's not their fault they have these reactions," said Wolf. He said misophonia could be related to obsessive compulsive disorder, PTSD and anxiety. He said because of the lack of research, there's no real cure or medication. But things like psychotherapy and exposure therapy can help, he said.

McAllister found her own ways to cope over the years. "I mostly do a side glance and just shift away somehow, or I have been really creative if I'm in a meeting space where I can't move, I will just block my ear on that side, but really, it just looks like I'm resting my hand," she said. McAllister, like others with misophonia, hopes one day, the medical community will research it more. But until then, she wants others to know they aren't alone. "I wish I was exposed to any kind of knowledge that everyone has their quirkiness everyone has something," said McAllister.

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