What It's Like Living With Misophonia

The world around me is a sharp, bitter, devastating blow.

07/18/2016 08:45 am ET | Updated Jul 19, 2016

For those that don’t know, Misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli. In laymen’s terms this means that noises like tapping, whistling, crunching and chewing can cause a fight/flight/freeze reaction. There is no cure or treatment. For more info go here

Misophonia is the rope that binds me.

You hold me back and toss me into a dark basement. You have kidnapped me and you continue to hold me. There is no Stockholm Syndrome. If I could escape you I would never come back. I would not wish for this on my worst enemy.

If I didn’t have you I could sit in a classroom. I could attend family meals and I could live my life to the fullest. If I didn’t have you, I wouldn’t feel trapped in my apartment. I wouldn’t feel concerned that I’m alone and unhappy. Some days I feel as though I have given up a lot for this disorder. I spend most of my time alone. I spend my days wondering what life wouldn’t be like without this disorder. I am not unhappy, not entirely. However, today on a hot and beautiful day I could not swim at the beach because there were too many others. I feel uncomfortable in my own skin, brain, and body. Not only do I suffer from audial triggers, I also suffer from visual ― I feel as though I am trapped constantly. The world around me is a sharp, bitter, devastating blow.

The world around me is a sharp, bitter, devastating blow.

Misophonia does not have to take over my life. There are things that I can do to make it easier on myself. But no matter what happens there is going to be a sacrifice. This is why I fight so vehemently for awareness. I know that misophonia is not always sunshine and roses. Misophonia is a troublesome disorder. My sensory issues go far beyond the grasp of sights and sounds. I feel it every time I touch water that is too hot or cold. I feel it when velvet touches my skin and makes me cringe. If I step out into the hot summer heat after my blissfully air-conditioned atmosphere I can feel the hold on my body. All of my senses are subject to sensory overload and under-load. If I do too much I feel my body pull out from under me. My back crumbles under the pressure.

I wish I had never heard of misophonia. I have spent the past few months of my life fighting for a cure. I have been fighting with everything I have. Many days I have spent 16-20 hours in a row, at a computer, trying to help with advocacy for this condition. I am not only doing this for the other sufferers, I am doing it because I have little choice. If misophonia is never cured, I will have to live with it for the rest of my life, and I am not sure that I can handle the implications of that revelation. This disorder has broken me in ways that I never thought possible.

I never expected that anything could influence my life more than anxiety and depression already have. Not a day goes by where I do not face the pain of misophonia. No matter where I go, what I do, or how hard I try to avoid it, another trigger will be around the corner, and then another. This can lead to a lot of isolation. Sometimes I do not leave my house for weeks on end, other weeks, I try my best to get out, but become broken from the pressure of trying. The guilt and hopelessness become so overwhelming that I want to fall asleep, and stay there, for days on end.

It started slowly… and then… it came to be stronger. Each movement and noise started to slowly encapsulate me. I felt threatened by its presence, suddenly, I could not avoid it. Why now? Why was I suddenly being tortured? Searching for answers has led me to an understanding and respect for research. Disorders are not cured by good faith alone, it takes many dedicated professionals and sufferers working together.

Although I am still living with this disorder I have hope. Due to the wonderful professionals on the IMRN advisory board I believe we may have a future with greater understanding of my disorder. 

 

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