For the past 10 years of my life I’ve given much of my time and energy to misophonia advocacy, awareness, research and more. I have had a steadfast goal of someday, somehow, there being a way for me to regain my life and not react to sounds or visuals. For many of these years my advocacy was the single thread that held me together as I lived in situations where triggers were numerous. Whether that was in my dorm room where banging sounds constantly happened, my first apartment with constant bass music and thumping footsteps, my parents’ minihome that rattled in the wind and amplified every lawnmower in a 2 mile radius, my second apartment with a grandfather clock downstairs that shook my floor, or in my current home with commercial lawnmowers and a make-shift basketball court in the parking lot.
That is to say… the triggers have followed me everywhere I have lived and been in the past decade. My work on Misophonia International and writing books came with me, a life-line for the days where fight-flight-freeze was omnipresent like a malevolent god. Misophonia is something that does not necessarily change over time. There are triggers present or there are not, and that line can feel like no man’s land between two warring sides. In those moments where there are no triggers, I’d like to say that I have some sort of clarity, yet I often sit wondering how something so trivial as a sound could cause so much distress. Even as the science grows and changes and reveals more about sensory dysregulation, I am still just a person existing between the moments of fight-flight-freeze.
I have given as much of myself as I can searching for a “cure” and yet a realization has come in the past two years: what if there is no cure for misophonia? What if the best we can do is learn to manage our nervous systems and turn those moments in-between into moments lived and enjoyed.
While I would still love for there to be a magic bullet or pill to take away the suffering of misophonia for all of us, I think that advocacy and accommodation are most important. Even if someday we have a way to alleviate misophonia entirely, what we have now are people struggling to fit in a system that was not made for our nervous systems. We should not have to apologize for finding adjustments and for finding ways to increase those moments in between.
While the idea that, “there may be no cure for misophonia” may seem like I am giving up hope, it is the opposite, I believe that regardless of a future cure, we deserve to be happy and enjoy our lives now.
