Many people define the meaning of their life by relationships, cultural interests, or their work. We are the movies we see with our partner – or the late-night restaurants we visit with old friends. We are the last-minute trip to Italy because we’re young and able. We are the university that accepted us – the late-night sorority parties and pizza binges. We are early mornings on campus. As human beings, we generally seek connection. We seek other people to identify with and we seek careers because of what we love.
What if you couldn’t do all these things? What if a disorder so intertwined in your brain and body had stolen away from you those small yet important moments? This happened to me, and I didn’t see it coming. I was blind-sided by a disorder that is under-researched and barely known by the world. If it weren’t for my cousin Ashley Bonin, who pointed me to a 20/20 interview on the subject, I wouldn’t know that this disorder exists.
I have misophonia, and that’s what’s happened to me. While a lesser-known disorder, misophonia has large implications on the lives of its sufferers. It is crippling.
My first term in year one of university was wonderful. Parties, friends, and great classes took up most of my time. I loved every minute of it. Nothing could ruin my experience. I had broken free of the depression and anxiety that shackled my teenage years and I was finally free. This joy was short-lived. Suddenly, whistling became sharper, leg shaking more prominent, and other sensory stimuli soon became so over-whelming that their mere presence was disorienting.
I was dumbfounded. Nothing could explain why classmates shaking their leg made me so upset I wanted to cry. The clicking of pens during exams rendered me useless. I could not think. I could not feel anything other than the over-emphasized jolt that accompanied every sound. Each time an offending noise or sight came up it was as though I was trapped in a cavern, a fierce echo piercing through my skull and shaking my body.
I tried to ignore the noises. I tried to rationalize their existence. People must click pens. People must cough. Life was going to go on whether I was annoyed or not. I struggled to understand my own brain because I knew that I wasn’t annoyed, I was completely distraught. I could not stay in the room as these events occurred. I became anxious. It was harder to go to class. It was harder to go to the cafeteria where leg shaking was abundant. I began to believe I was crazy – there was no way I could be so bothered by otherwise normal stimuli. I had never heard of a condition where this was possible. My friends had never heard of this. My family had never heard of this. I told my doctor of the condition and we rationalized it was from anxiety – he had never heard of these symptoms either.
Luckily, after complaining to family members about this strange affliction, one could come through for me. My cousin Ashley had watched 20/20 and remembered the story of a young girl that was unable to handle noises. This girl was so bothered by noises that they effectively were “ruining her life.” Finally, I had discovered what was wrong with me. I searched and I searched. I came to Facebook groups and web sites that understood the disorder and I finally knew that I wasn’t alone.
That happiness was short-lived. Within those coming months, I was faced with a harsher reality than my disorder not having a name. My disorder was not being efficiently researched. While we fight tooth and nail to change this through advocacy projects such as Misophonia International and Misophonia-Research, the disorder’s impact on my life has not lessened.
Even as a highly-functioning person with this disorder, I must still make decisions that impact my life on a day to day basis. My disorder has changed how I live my life, and it’s changed how I define my future. While many worry about their social lives and whether they will get into the right school – I was forced to give up my dream school. I was unable to continue in a traditional brick and mortar location because of constant stimuli. I have learned since my ‘awakening’ that it is common for triggers to become worse in time. Exposure makes the disorder worse, too. This means that there is no “suck it up.”
This is not to say that I can’t have a life. I can socialize and I can have meet-ups with understanding friends. If I am in a particularly strong mood, I can even go to movie theaters and restaurants. Sometimes though, I must leave. I know that the world cannot change to accommodate me. Streets will always have honking cars. Supermarkets will always have rickety carts. People will hum and sing in public. Plates and forks are going to clank together, and people are going to chew. The world is not going to adapt to my disorder, but without research, neither am I.
When something, especially a disorder as peculiar as Misophonia, cannot be understood it is common-place for ridicule or dismissal to come into place. Many with this disorder do not know they have it, and those that do may not be able to properly explain it to family and friends. Stigma is abundant. We have faced phrases such as “chewing rage” and have even been mocked live on air by Kathie-Lee and Hoda.
We, as a culture, must fight the disorder to dismiss what we do not understand. Before I had this disorder, I did not know it existed. I did not know that my amygdala (the fight/flight center) would be able to effectively challenge my ability to function.
While there is little research on misophonia, it is currently believed to be a neurological disorder. There are no cures. There are no treatment options. One must learn to cope. One must learn to walk through the labyrinth with little resources. There is hope, though. A coping provider network is building by the day. Providers are learning what misophonia is, and we are not alone. Still, we are faced with a life-challenging disorder that is ignored by the world. Not by ignorance, but by blatant lack of knowledge.