Behind the Face of Chronic Illness and a Pandemic

Behind the media giving us all the front row perspective of a global pandemic, shedding light on front line workers, I am left to wonder: did anyone think how the lives of the chronically ill have been affected? People whose lives revolve around hospitals, treatments, and doctor appointments, a regular battle they live despite a global health crisis.

We are the people who wake up and face a battle of our own every day, a battle to be heard, treated, and for our health. We walk the hallways of hospitals, medical facilities, and doctors offices more often than most, all while not looking for any sort of recognition for what we know to be as our “normal.”

A global pandemic highlighting what some may already have known, shedding a spotlight on the missing puzzle piece, “mutual sympathy,” the small moments taken to try to understand, to listen, to truly see the patient. How can a hospital put its focus towards what is now feared and have blinders on towards the ordinary? Where does the line lay when you open up the conversation on what is “essential care” and who is left to answer what defines essential. A storm brewing in the darkness, masked by the beast that runs our news headlines. One patient’s voice, echoing among the hospital walls, optimism of being understood turns into prayers of being simply heard, without judgment. Fighting for your “essential treatment” bleeds into desperation as your every breath becomes the only tool you have to justify your treatment, validate your illness. In a room full of people who are suppose to treat and care, thoughts race as you wonder why me, what did O do, when did I have to justify my importance of a patient. A silent battle rages on within my mind and soul, of whether to justify their actions or justify my own treatment. A solemn energy fills my soul as I learn a lesson of how expendable a patient can be, how my treatment can never truly be promised, and can be taken away without my voice meaning anything. A person in power, who has never met me, has the final and only say. When a new computer system is the biggest scapegoat, leaving no reason for an explanation or conversation, justification.

Beyond a global pandemic are real people, living a lifelong battle, who have now been pushed aside in places they never deserved to be overlooked. We are exhausted from fighting our own silent battle, lost in a world that only sees a pandemic hurting people, who forgot about us, the ones who walk the hallways of hospitals, who lay in the emergency stretchers, who face tests and treatments, who now face the fight of justification, worth, importance, health. I may not be affected by the raging beast, but I have been affected by a room of medical professionals who made me stand alone in the fight for my treatment, to brave emergency room visits that should have never called upon me to be justified, to stand alone and prove that my illness makes me unwell enough to require treatment today, not two weeks from now.

I have lost sleep, in fear of where to turn for someone to listen and see the validity of the treatment I have received for years. I have shed tears, from frustration and belittlement, and fell into a sense of desperation. While everyone is faced with the overturn of their lives, finally the unaffected can have a glimpse of understanding what a limited life feels like, a life full of unpredictability, uncertainty, and wonder. A life that walks withins the walls of the place we all avoid unless we don’t have to. We are the chronically ill, We are The Mighty…