Thirty-five years ago I saw the first of many know-it-all specialists. It started when I couldn’t turn the key in my car’s ignition to go see my high school boyfriend. Now I’m a menopausal quadriplegic and I still don’t have a diagnosis, despite numerous wrong ones in between. Clearly I’m a first, and I want this disease named after me.
They’ve been trying to diagnose me for eons. After my first wrong diagnosis I had to travel all the way to the big city to use this newfangled technology called an MRI, and they only scanned my brain. It didn’t occur to them to scan my spine, because that was the stuff of the future. Yes, I ended up with another wrong diagnosis.
Over the years I’ve been diagnosed and undiagnosed with more neurological and rheumatological diseases than there are A-list celebrities with herpes. And I’m talking big ones like MS and lupus. Though my favourite is work-related upper limb disorder, which I assume is a dour relative of tennis elbow.
In 2020, a great big group of top experts from all sorts of specialties sat in a room and argued about my symptoms for a few hours, shrugged their shoulders and labeled me with nothing but a description of said symptoms (CNS vasculitis alongside an unknown rheumatological disease). It’s time they admit I am the first identifiable person with this disease and give it a name — mine.
Too many diseases are named after doctors. Why should they get all the glory? It’s not like they had to suffer. The only one I can think of named after a patient is Lou Gehrig’s disease, and he only got the honor because he deserves immortality. Power to the patients. Name this damn disease after me.
“Stacy’s sclerosis”? That works.