Living with a disorder that doesn’t have a cure is unimaginable. At times I have been called overly-passionate when it comes to Misophonia and the advocacy surrounding it. I have been accused of being too dedicated and even told that I should back down and let things go slower. I can’t do that. When I say I can’t, I’m not doing so in the stubborn kind of way.
Misophonia has taken away from me more than I care to admit. Due to this disorder I have been saddled with an unfortunate situation. I’ll be honest, I’m fighting back tears as I write this. My eyes are wet with the grief that comes with realizing the impact that this disorder has had on my life.
This week should (and would have been) the start of my fourth year of university. I should be spending my time with my classmates. I should be going out to parties, laughing, and enjoying the last year of my bachelor’s program. Instead, I wait to start online classes next month. The school that I dreamt about as a depressed and anxious teenager was taken from me. It became a symbol and a beacon – it was everything I wanted when I finally recovered. As an overly-anxious 19 year old I took a leap, and I finally crawled out of depression’s grasp to jump into my future. That first year of university was amazing. Unfortunately the second year was wrought with a problem that hit me full force.
What was small inconvenience before was now un-imaginable. I couldn’t stop seeing a leg shaking. Whistling brought me to tears. Classrooms became hell. I am grieving. I have faced many losses, and many deaths. This has hit me just as hard as any of them.
Misophonia terrifies me. Past the amygdala and the fight/flight/freeze response I am petrified. Like the impact of a basilisk I feel my nerves pause. I feel my heart skip beats. Why? Because if this disorder continues to get worse I am not sure what else I will lose. How will I travel the world like I’ve always planned? Will I ever sit in a café in France? Or, will I ever dance in the streets of Latin America? If I have a say I will…
This is why I’m fighting so hard. Because I have to. I need a cure because I know that my quality of life is hanging in the balance. We need to help with research because that is the way to find a cure. I don’t think I’m able to stop fighting. If I stop fighting for a cure than I have stopped fighting for my future. I’m not ready to do that.