Have you ever felt like you were dumped in a corked bottle against your own will, beaten and bruised by the seas and storms of life, yet stuck, unable to escape let alone explain?
This is a small glimpse of what life can be like for someone with chronic illness. Affecting six out of every ten adults in the United States, chronic illness manifests both visibly and invisibly. Although unfortunately for many, including myself, it is a very lonely road, often full of harsh criticism and isolation from doctors, nurses, even friends and family members whether intentional or not. Thus I would like to take the opportunity to shed some light, not for pity, but so others may have a glimpse of our world.
Battling with various health issues throughout my childhood, it felt as though I was always met with more questions than answers. Even still as an adult and getting diagnoses across multiple organ systems, I am often met by doctor after doctor, even at the highest level who do not know what to do with me or dismiss me because of my complexity. I don’t even know what to do with me.
Running a never ending slew of tests and week after week in the hospital, it is no surprise when I have an anxiety attack when another phlebotomist walks in to draw more blood or I come across nurses, ambulance drivers, or radiology techs that have taken care of me before. “Oh you’re back again”, they say, referring to room 833 as “home”.
Very few understand my world of Epipens and tubes without food nor do I have the energy to explain, especially when they ask me “Alisha, how are you today?” I hate to lie. I really do, although no one likes to hear I’m getting worse or my endless complaints of what hurts. Thus my answer remains “I am okay”.
Forced to face life merely moment by moment, the organization and daily rhythms have gone out the window along with plans, or those which I am constantly having to cancel because I was up all night in pain or because my body won’t cooperate. Instead, my goal today is simply to not to stare death in the face.
Never knowing the one looking back at me in the mirror with all her scars and tubes, seeming like one minute a size 2 and the next a 22, yet there is nothing I can do. Who am I and what is my purpose here anyway?
While my world hasn’t been the same since the day when “Chronic Illness” was added to my chart and the grief accompanied by other emotions often lingers for days, I know I am not the same. Rather these days I am far less likely to judge you, for we all have battles we face whether or not we know their name. And you know, each day isn’t just twenty-four hours of mindlessness. All I have is a gift thus I must make the most of it, living with no regrets or things left unsaid. Offering up my weakness, I must rely upon Him, together, my cross we bear… Even still, I would never ever wish chronic illness upon anyone. Yet if that’s you too know you are not alone.
*If you or someone you know have a chronic illness and are interested in meeting others like you, please email me at firstname.lastname@example.org. I am starting a support group and our first Zoom meeting is scheduled for October 6th at 7 pm.