Silent Torment- Can't you HEAR it?!

If you met me on any given day, you would think I was a completely normal, healthy and mostly happy individual. But I'm not. And once I finish writing this you will most likely label me as most people do...a freak.

I suffer from a brain disorder. It's a neurological condition so obscure most doctors have never heard of it. Only in the past 5 or 6 years has knowledge of it began to surface thanks to social media. It's invisible to everyone- there is no evidence on my physical body that it is occurring. But unlike cancer that grows inside- it is the outside world that triggers this neurological tyrant inside my head. The outside world with all it's tiny insignificant noises- a dog licking, the chomping of food, a dripping faucet...even the drip of rain on window panes can cause it. It's called misophonia, There is no cure or even medication. The best doctors and audiologists have offered is to  play white noise in our ears when we are being triggered.

                                                         

I'm writing this for all of you who know someone with misophonia, so that maybe I can help you understand what it is like to live with this disease.  Imagine a woman with long fingernails going to a chalkboard and running her nails down it as hard as she can. Over and over again her nails screech screech screech on the board, the sound keeps going and you cover your ears and yell stop. BUT SHE WILL NOT STOP.

The sound makes you crawl out of your skin. Now imagine those feelings you have escalated times a thousand. Every nerve ending in your body is being probed and prodded. It physically hurts so bad you want to scream at that woman, you want to punch her in the face to get her to stop! But you can't... not if you have misophonia. Because chances are- it isn't someone scratching their fingernails down a chalkboard. It is someone chewing gum or smacking their food or drumming their fingers on their desk...completely oblivious to the silent torture they are putting you through.

Most of my life I have had this, although it wasn't until I went to Korea and started researching online that I discovered that "it" was an actual condition. Up until then, I had always believed it was just something wrong with me... that I was this freak with pet peeves that made me crazy. Having to use public transportation in a city where people chew gum incessantly and smack their food proved to be almost unbearable. I was constantly in tears, sometimes in a rage. And finally it became so severe I started searching key words online to see what I could find. When I found blogs and forums of thousands of people describing the same symptoms and feelings, I wept with relief. I wept with relief to know that it isn't just me. Yes, there is something very wrong with me. But it isn't my fault. I'm not crazy.

The day to day life of a Miso.

Suppose you had  a terrible day because your car broke down in the rain or because your boss yelled at you...it happens and it sucks. But someone with misophonia may have terrible day simply because someone with a cold kept sniffing around them. Or their boss decided to give a lecture while chewing gum. It could be the worst day even if it was supposed to be the best day. For example.. doing something exciting and fun like going to Disney World. But what could be more horrible than spending a day at Disney World with someone that sets off your triggers. For someone with misophonia, everyday is dealt with anxiety and stress whether going into a new situation or having to deal with people we know trigger us. 

 I have heard it all- I should just ignore it. I should count to ten and breathe slowly. I should think about something else. I have been accused of being a control freak and using this condition to control others.  That is somewhat true, I have to live my life very defensively. Going to a restaurant, I have to request an isolated table away from people. I cannot go to the movies if it is sold out; there has to be spaces in the back away from popcorn chewers. Even the sound of whispering can trigger me. I don't go to eat with people until I know how they eat. I might test them by offering them a small snack to see how they eat. I don't get myself in situations where I can be trapped, like riding in a car for long distances with someone.

                                             

In school, I had to request my fellow students not to sit near me if they were chewing gum. In fact, this semester the classes are so small I offered a guy a dollar a day not to chew gum. I also had to go to my teachers and request that they not allow people to eat during our class. It is unfair that I am infringing on the rights of others. But people can choose to eat before or after class. I don't have the luxury of making any of those choices. If students eat during class, I have to leave. Because I cannot hear what the teacher is saying. I cannot read the words on my text book. The only thing I know is what my body is feeling- which is pain. Sometimes so severe I start to cry.

It is not just strangers that affect me. I am unable to eat with my parents, so most birthdays and family events, I don't participate. We have gone bowling once and every once in awhile we will watch movies together. But overall, my parents prefer to just eat dinner, so I don't go. Sometimes when my mom and I are talking, she makes a clicking sound in the back of her throat. She doesn't know it and she can't help it. But I often have to end our conversations abruptly because I cannot handle. My dad makes noises with his mouth so much, that my conversations with him have to be very limited. I cannot talk on the phone to my boyfriend when he is tired and his voice gets husky. It can be very lonely and isolating. It can be embarrassing and awkward.
                                         

As I have gotten older, my tolerance for sounds have gotten worse. Sometimes I feel a lot of fear about the future; wondering, is this going to get any worse? There's no cure that anyone knows of, not even a pill to take. I wonder what that means about my life and my future. There are days that I envision myself standing in front of a massive stereo, putting on headphones and turning the volume all the way up and screaming in pain until I lose my ability to hear. Misophonia controls my life. It is the screaming hell that only I can hear.


For those of you living with someone with misophonia...

http://megpoulinindeed.com/2014/01/23/the-sounds-of-our-crisis-living-with-misophonia/

If you think you or someone you know may have misophonia, here is some more information:

http://www.nytimes.com/2011/09/06/health/06annoy.html?_r=0

http://abcnews.go.com/blogs/health/2012/05/17/do-you-have-misophonia/

http://watchabc.go.com/2020/SH559026/VD55204215/2020-518-medical-mysteries