Misophonia is a neurological disorder that is defined as the extreme hatred of a sound. These sounds are usually common sounds caused by other people, such as chewing food. The sound will trigger a fight or flight response in the misophonic person which can have psychological and physical manifestations. Misophonia is a relatively new and understudy disorder, only first being recognized in 2001. While new, the disorder is still impactful, and that is where this story begins.
My sister has Misophonia. It started when she was about 6. We would be at the dinner table, I would take a bite, and she would turn to me, tense up, and scream. This continued for years. It advanced to even my coughing or sniffing my nose triggering her too. After years of therapy, doctors, and diagnosis she is now finally able to control these responses.
Ask her about Misophonia now and she’ll say extreme hatred doesn’t even begin to describe it. She describes it like flicking a switch in her brain, where all the lights for fight or flight turn on and the only choice is to let the feeling out in the best way she knew how. It wasn’t pain, but fear: it felt to her like an attack on her mind, and an uncontrollable response. Even to this day it’s there.
But this isn’t a story about a girl with Misophonia. It’s not even a story of an amazingly vibrant woman who beats every obstacle and lives her life to the fullest, embracing her differences. This is a story about disability. It’s about how when she was looked at, she would be categorized. Too “normal” to be differently abled, but never feeling valid in the normal definition people gave her. My sister calls it the white picket fence conundrum; people see the ideal “normal” fence but can’t look past it. Her story exists beyond the fence.
People constantly think of disability as having a body that is broken, or different, consumable and visually understandable. People see disability in the literal sense, they only see it. But that is not what disability is, it’s not who differently abled people are. They are not the sum of their body and how it works, they are the people who experience the world in a way that is different.
Relying on only what the eye tells you about a body leaves behind my sister: the people who are also valid as differently abled. The people who are also learning how to navigate in an ableist society. All differently abled people deserve to feel valid, loved, and empowered. My sister is and always was valid, and I hope that in hearing this story you see beyond just the image of disability. It is not always what you see, but for a lot of us it is always there. Society told my sister she looked too “normal” to be differently abled, and she redefined it as she is too unique to ever be “normal”.
Unruly Bodies 
I have misophonia too and I have navigate my everyday life on the edge, hoping to not be triggered in front of others. I only discovered misophonia on the internet about 5 years ago. Doctors and therapists have not taken my word for my experiences and trauma with it. I have to explain myself and my state to others so often and it feels burdensome. It feels like I’m just being a pain. I have to defend my disability and even then, I will be ignored. So I know how your sister feels, not only to not have your disability seen but not even be heard. If you would like to, tell your sister she is not alone with misophonia.
Isn’t it helpful to have it named? I’m so grateful for the internet for many things (and mad at it about other things), but especially the ways it has opened up communities and experiences to help us not only feel less alone but also put names to our experiences in the first place.