The amount of disrespect and disdain people have for the disabled, especially if they’re the “bad” kind of disabled, is honestly jawdropping. If I had a dollar for every time some rando tried to lecture me on the disease I have been living with for THIRTY YEARS, I’d be a rich woman.
I grew up in this body. I know this body. This disease has been wedded to this body since I was in utero; I have never lived a day without it.
I am the one who has dealt with sudden fluxes in hormones that have literally left me so weak I have to crawl. I am the one who knows which climates and weather fronts make my joints swell up until I want to scream, every damn night of my adult life, living in a level of discomfort that would make your pussy ass weep. I am the one who suffers infection after infection, in my skin, my ears, my lungs, my tonsils, over and over and over so that it seems every goddamn month I am on a new antibiotic. I am the one who is always, always exhausted no matter how much I sleep, always fat despite rarely having an appetite, always running to the bathroom even though my bladder is already empty.
I have lived this for thirty goddamn years. I have carried this malfunctioning hot mess through thirty years of pain. Baby Karen never knew a single day without it. Little girl Karen used to lie in bed at night screaming because of the pain lancing through her bones.
You know who a doctor asks about my disease when they first meet me? Me. You know who they ask about how my broken body reacts to this or that? Me. Because they know I’ve been living with her 30 years, and pro recognizes pro.
If you think you can come in here and lecture me about my health, you are out of your fucking mind.