When I first discovered what ‘Misophonia’ is, I had an entirely different story to tell. I was relieved there was a name. I was also scared that I have a disorder that seems to be under-researched, and would be at risk to be stigmatized.
Most people that I have talked to with Misophonia have been suffering since they were children. However, I am one of the late-bloomers. Regardless of when it came to be, Misophonia is an extremely isolating disorder. I was 16 when I showed my first symptoms, but they were not strong. It wasn’t until 19 when the full force of Misophonia hit me like a freight train. Since then, I have felt its wrath clasp around my throat, taking over several aspects of my life. My first blog post on Misophonia was written before I even knew there was a name – before I had anything to go on. I remember writing in frustration, tears not far off, as I wondered why I was so messed up. Why, all of a sudden, I was having so much trouble with sights and sounds. When I first came across Misophonia, I described it as ruining my life. “I didn’t understand why, but these everyday movements and sounds were turning normal situations into a terrible prison.
I attributed my first triggers to an anxiety disorder, as well as major depressive disorder. Small movements, or rocking back and forth was enough to cause near panic attacks. If a desk was not sitting on the floor properly, I would lose it. If a classmate was making loud, distracting noises, I’d complain to the teacher. It didn’t always get me far, but if they didn’t help, I’d leave. I wasn’t the most attentive student in high school.
On January 27th, 2014, I wrote a post expressing my confusion and rage, in regards to what I now know as Misophonia. Please bare in mind that this was written before I had any idea what Misophonia was. The title was “I don’t know what to do”. Below, it is recopied in full.
When I first came to university I didn’t remember why I had been so distracted and annoyed in high school. Homework isn’t hard, the reading is fine. What I can’t deal with is the burden that my anxiety can be in a classroom environment. Half of the time I have a scowl on my face in class and probably come off as a bit of a condescending witch. Whenever people whistle, click their pen, or shake their legs, it’s extremely distracting for me and for a reason I cannot explain it sends me into a horrible state. Leg twitching in my peripheral vision has literally “brought me to tears. I’m so frustrated that I can’t just “get over it”. I understand restless leg syndrome is a real thing but so is the anxiety that I suffer every time I enter a classroom. I understand that it would be rude to approach somebody and ask them to please stop torturing me.
Instead, I often stew and try not to get upset but instead I usually just end up irrationally angry. Often times I can actually feel the vibrations on the floor from people shaking behind me, even if they’re far away. A couple of weeks ago I started hyperventilating when somebody was whistling. Why? The sharp noise was so unbearable to me. I honestly don’t know what I’m supposed to do about this. Breathing exercises, telling myself it’s out of my control and “thinking positive” are hopeless. I don’t want to constantly glare at my friends like they’re the worst thing in the world just because they’re shaking their feet. I’m “actually sorry it bugs me this much but I can’t stop. Sometimes I find myself sitting in my room anxious about going to class just because of my triggers. I just feel alone in this and that I must sound ridiculous to others. Aside from hiding in my room wearing ear plugs and only ever communicating via skype I’m not sure of a fix to this.
My first “real” trigger was whistling. I would go into a rage and nearly cry whenever faced with it. Some people would whistle on purpose, because they did not understand the severity of my reaction. I remember being upset for hours after this would happen, and that confused me a lot. Then, one day my mother’s foot shaking really started to bother me. Soon after, the sound of singing and country music really sent me over the edge. This caused a lot of fights and confusion – why was I so intolerant? It made no sense.
On March 14th, 2015, I described my feelings in a blog post entitled “The Agony of Misophonia”.
“Everybody gets annoyed by certain noises.”
“You just need to get over it, you can’t change the way the world works.”
Welcome to Misophonia. Like other conditions, those of us who suffer get to live day to day with the horror of explaining it to others. We’re those “crazy” people who give you an angry glare when you click your pen, chew too loudly, or shake your foot. Some are perpetually angry, nitpick and we are hard to be around sometimes. We don’t want to be that way. Believe me, I haven’t chosen this neurological hell. I want to sit in my own apartment and not cry day and night because the guy upstairs is walking too loud. I want to go on a bus and not have to worry about the guy whistling. I want to live my life.
To learn more, find research updates, or coping tips, please go to Misophonia International.