Lately I’ve felt pretty guilty. For three years I lived on my own, in a city 6 hours from home. People did not expect to see me. I had a group of friends and a life in the city. I saw them when it suited me. Most of them were amazingly understanding and I feel like I had built a network of people that were understanding. Then, money led to me moving back home I even got a credit card from creditloan.com to be able to help around. It’s never nice to feel like the rug has been pulled out from under you. That’s not what this is about.
Now that I’m ‘home’ friends and family are flabbergasted when they learn I’ve been around for months. Very few of them have seen me. I am not intentionally avoiding friends and family. However, as I think harder on it, maybe I am. You see, my misophonia has gotten so bad that the mere thought of explaining the situation to more people, risking triggers, and having the inevitable “first trigger conversation” is too much. It may seem irrational, but the idea of being triggered affects me so greatly that I simply avoid confrontation altogether. The idea of a relative showing up even weeks from now brings me so much distress that I become anxious and irate.
Because of my misophonia I am now nocturnal.
I rarely go outside except for the wee morning hours before most people have even woken. I do this not because I dislike people, but because triggers are so life-altering, so volatile, that avoidance at all costs has become my new way of life. Still, there are people I love and miss. Unfortunately, seeing them is a lot of effort. It is wrought with fear of yelling at them, of feeling hurt by their actions (despite them not knowing they did it) and the inevitable tarnishing of relationships that comes from great strain.
I’ll admit to throwing back a few drinks whenever I have to face crowds. It’s the only way I can even stomach the idea of being around a crowd larger than 3. Yes, 3. That’s how isolating misophonia is. I turn down shopping days, and I turn down casual chats. I’m not trying to be cruel and I certainly don’t want to be isolated. The thing about misophonia is that it cannot be controlled. As many here know, we don’t have a cure yet. Even using a sensory diet and regime cannot alleviate all of the symptoms from being triggered. Pain, anger, frustration. The emotional trauma after-wards is just as bad. I’d reckon I live in a constant cycle of fight/flight vs fear of fight/flight. Everything I do goes back to the disorder. Every decision. I know when my neighbours are outside – I know when objects are shaking in the wind. I know when lawn mowers are going off. I know everything because each time it happens, I’m faced with devastating consequences.
There is no “get over it” for misophonia. Sensory information is cumulative and each time I’m triggered I feel it chipping away at me. While I can’t avoid people forever, it is sometimes my only option. I do not want to get angry or be bitter. I do not want to ruin my relationships by constantly snapping at people for moving their fingers, making noises with their mouths, or shaking their feet. But, when I’m faced with these triggers – I feel as though I have been shot. My head hurts. My body shakes. I feel hurt, literally. My muscles tense. My back aches. My heart races and my mind goes numb. All I feel is the pain and emotional frustration. As it continues, the anger builds. If I stay too long, I enter either meltdown or shutdown. Meltdowns are tantrums – a complete intense irrational state where I want to lie on the floor and pound my fists. I’ve done it. Shutdowns are when your entire body just stops. Seeing becomes too hard. Breathing feels like a chore. Imagine a panic attack that has been put on steroids. Everything becomes loud and quiet all at once. Unfortunately, once I enter shutdown if the noises continue, I come to. I then feel this entire reaction again and again on a loop. Later, it replays in my memory. Every noise. Every movement. I am trapped in this disorder.
So, I stay away. I hide and I flee. I spend my nights mostly alone and I spend my days trying to sleep as much as possible. The farthest I go is the grocery store. Even that simple trip feels like it takes all of my energy. Simple activities leave me fatigued. My sensory system is the equivalent of spending all night and day at a rave party hungover. I feel assaulted. Constantly. I miss my friends and family but 10 seconds of a trigger can set me off for hours. Then I remember they do it. Once I remember they have triggered me, it sticks. I think about it. I worry that it will happen again.
I’m not avoiding you, but my misophonia is.
I don’t want to be angry. I don’t want to be hurt. But this disorder does exist. My amygdala unfortunately cannot tell what is a threat and what is a friend. As I fight for a cure I stay huddled in the night. But, I promise you, I still love you. I’m just going to have to do it from afar for now.Want to learn more? Join a Workshop with Dr. Jennifer Brout or Duke CMER at Misophonia Education.