Living With Misophonia

 

I have lived for most of my life with a condition that I had no idea existed or had a name until ten years ago.  That name is misophonia. The word literally means “hatred of sound” and it is now becoming a subject of scientific research, https://www.nature.com/articles/s41598-019-44084-8. 

It may sound bizarre to those without the condition but perhaps this example can illustrate it:  imagine being locked in a room where someone continually scrapes their fingernails down a blackboard.

My misophonia is a major influence on where I live, where I go, and who I can be around. 

In the workplace (I am now retired) I was subjected to “sound triggers” like gum chewing, sniffing, humming, and whistling.  With misophonia there are also visual triggers.  Just the sight of a person’s jaw moving, or their foot rotating or twiddling of thumbs evokes feelings of rage and anxiety that make me want to bolt from the room.

Office layouts would change over time as dictated by the latest trends.  Separate offices were the norm until the open concept was adopted, then later on, cubicles became the “in” thing.  The open concept was always the worst for me as I could hear and see people all around me.  Each layout or personnel change brought with it the fear of new triggering situations. 

Then there are the social get-togethers.  Consider that you are at a family event when suddenly you become aware of a close family member (whom you love) rotating their foot as they sit on the couch.  You are in such discomfort that you look for any way to escape or avoid the sight.  You try to find a way to block it from your view (I have awkwardly propped cushions on my lap to do that) or you go and sit at a far table instead of the couch but the hostess calls you back and kindly says “sit here, be comfortable”.  But you can not be comfortable.  You are writhing inside.

I have, after considerable anguish, decided to tell people what is bothering me and often they have been considerate and kind.  One friend told me “Tell me whatever bothers you and I won’t do it” which was wonderful, and a family member said “Just signal to me when I am doing it” but these things are done unconsciously and it is very hard to keep interrupting someone’s conversation to ask them to stop rotating their foot, or sniffing, etcetera.

When discussing with one friend about her gum chewing, she told me that she needed to do it for her dry mouth, and then when she did stop, she would tell me how much she missed it.  On two later occasions, she chewed gum while one other person was present, thinking, I guess, that I would be inhibited from mentioning it in front of them.  These passive-aggressive actions seriously damaged our friendship.

I am now 71, and like many aging people, I live with the knowledge that at some point I can lose my autonomy and be forced to live in a setting that is not of my choosing.  A person with misophonia faces even greater anxiety on this score.  Will I be able to have noise-cancelling headphones and white noise machines at all times?  Will I be able to avoid the triggering sounds and visual cues that put me into a state of torment and anxiety?

I hope that with greater awareness, people will come to understand the serious nature of this condition and how some thoughtful accommodations can help to ease the misery of it.