When I first discovered Misophonia, and what it 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. Unfortunately, when Kathie Lee and Hoda went on TV and mocked the disorder, I discovered I was right.
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.