For many years I have worked from home. It’s been very stressful to work in an office. The noise… the terrible sounds of yelling… the clicking of shoes across the floor, conversations, staplers, papers shuffling… the list goes on and on.
As I sat in front of the owner of the company, a woman I worked with for 28 years, tears filled my eyes. She was no longer accepting the fact that the office ‘stresses me out’.
“I have a neurological condition called Misophonia”.
There it goes… I said it…. Out loud. Whew! She stares at me with “that look”, the look that says she thinks that I am completely insane.
“It is not all in my head! I am not crazy”. I blurt out as I begin to sob uncontrollably. I hand over a detailed letter requesting work accommodations which also explains Misophonia. I had hoped I could keep this information to myself; I really did not want anyone to know. This is the dirty little secret I have kept hidden. Why? Until recently, I did not know it had a name, I honestly thought I was just a mean and hateful person.
I feel a wave of relief wash over me, as she sits in front of me reading the letter. It is out in the open, I do not have to hide this anymore. Wait a minute… Does she think I am crazy? What is she thinking? A look of understanding begins to appear on her face, things are making sense to her…. why I will not eat in the lunchroom, why I do not attend company parties and functions, and why I try my hardest to avoid my co-workers. I explain to her that Misophonia is something I have had my whole life and it has gotten worse and worse over the years, there is no cure, and there are only coping mechanisms.
With a skeptical curiosity she asks me questions, “Have you tried to ignore the noises?”, “Have you tried to block them out?”
My heart drops… she thinks I am making this up? Does she really think I can control this? No, I enjoy this pain, I love the anxiety of being triggered to the point where I am wishing people dead. This is fun for me. This is not a condition that I chose, there is no cure, and there is no ‘magic pill’ to make things all better. Then…. The loaded question, “Why didn’t you tell me about this before?”
This is a simple one to answer, “I never told you about it because you would look at me like I was crazy, THE WAY YOU JUST DID.” She explained that she doesn’t think I am crazy she has just never heard about this condition. Is she saying this just to appease the crazy person?
“So what are you going to do about it?” she asks. This is my favorite part of our conversation, she starts to explain that all we need to do is “google it” and we can find help. The laughter inside my head is deafening. Really? That is all I need to do? Well. Let me get on that right away, I did not realize there was such a simple solution. Why didn’t I think about this? Wow she is just not ‘getting it’.
To help her gain a better understanding of how Misophonia works, I asked her to think about what it is like to jump into a swimming pool, the cold water is shocking but after a few minutes, the water is not so cold, it’s actually quite comfortable, even warm. Now let’s think about the water and pretend the water is sound, when a person with Misophonia is subjected to a trigger sound, we are hit with the shock, but unlike the pool water that gets warmer with exposure, the sound triggers make the water colder… and COLDER and COLDER until it is so cold you cannot stand it. Sometimes, depending on the trigger and circumstances our reactions can either be a slow build up- other times it can be an instant explosion. As we are in our ‘trigger mode’ we can pick up other triggers, things that have never bothered us previously. Like cells multiplying and we cannot stop them.
It is very challenging to explain Misophonia to someone, but it is something that we do need to do to help raise awareness. Some people may be very empathetic in their reaction, others may feel that this is a ‘made up’ condition, and there will also be those who will choose the path of ignorance. You need to remember that is not a negative judgment on you and does not diminish the severity of this disorder. You are still you and that is all that matters