The story of Jeremy
My daughter is 14. We’ve always known her to be very intelligent, sensitive and mature in many ways. What we didn’t know was the disorder waiting inside of her, ready to manifest itself as she entered that difficult time for any child: puberty.
Misophonia is one of those rare disorders that is not studied enough that controversy exists on how to even categorise it. Literally it means “hatred of sound”. It is thought to have a neurological origin. Sufferers experience intense emotions such as anger, disgust, hatred or rage triggered by specific sounds which can be loud or soft and it is not the same sounds for all patients. It has also been called selective sound sensitivity syndrome, or 4S.
My daughter reacts with disgust when most people eat in her presence; she flees the room. If we talk quietly while she is there, she will beg us stop or leave. She cannot stand the sound of smacking lips. She wears headphones almost everywhere to block out her trigger noises, or fill the distressing silences that she also can’t stand, like the quiet of a classroom – the soft whisper or the scratch of writing. At those times she needs noise.
When her symptoms first manifest, before we understood, we were angry and upset at her reactions. We thought she was just being petulent. We discovered her diagnosis by accident when an internet search for “hatred of sound” one day brought up Misophonia. We had to look hard to find a medical professional who had more than a casual knowledge on the topic. Her official diagnosis was in some ways a relief.
She is sweet. She is kind. She is smart. She is a crusader for LGBTQI+ rights. She will talk endlessly about what excites her, from space to her art to Hamilton. Her disorder means that her relationships suffer; she cannot eat a meal with her family and avoids instances with friends that involve eating. We have to explain to extended family and friends, often multiple times, that she is not being rude.
Most frustrating though has to be the people who upon learning of the disorder, declare that they must have it too, because they don’t like the sound of eating. Misophonia is not “disliking” the sound. I describe it like walking into a dangerous situation; your “fight or flight” response is triggered, and with Misophonia it’s like that all the time as you anxiously wait for a sound to trigger your reaction.
Scientific articles are slowly starting to appear, and maybe one day there will be some kind of way to mitigate or even cure the disorder. Until then, my daughter eats alone.