Professional Patient
I didn’t mean to become a professional patient. It’s about the last thing I intended to become. Things I thought I’d become when growing up include: baker, dancer, president of the United States, lawyer, doctor, neurologist, marine biologist, audiologist, speech language pathologist, writer, artist, mom, teacher, and counselor. Instead of becoming an -ologist I started collecting them. I don’t think I daydreamed about lying in the hospital, awaiting test results that determined if I am healing or continuing to ail. I didn’t dream about planning my schedule around doctor’s appointments, medications, blood draws and transfusions. I know I never dreamed about being so dependent on others.
I am a person living with chronic illness. Just when I recover from one thing a new one gets diagnosed. My cures often lead to more disease. When someone asks how I’m doing, I hesitate. Especially if I feel inclined to answer with “good”. I can’t lean too hard into feeling good. I’ve learned when I do, the next complication, disease, or rash drops. Almost instantly as if it were waiting for my signal to make its appearance. “I heard her say ‘good’ boys, time to shine!” What’s next? is becoming a mantra and life philosophy.
It’s not a sad life but it is a difficult one. It is a life that leaves me feeling more tired than energized. When you become othered in society it feels lonely and it’s a struggle to connect with people. The message I often receive from the world is that the world doesn’t have time for you and your disabilities. It keeps spinning and expecting productivity. The expectation has been the pandemic. Now everyone knows what it’s like to have parts of life become inaccessible.
I know I’m not alone. The world is full of Professional Patients. Having your disease or recovery consume your days and nights, it’s hard to find space for the you that exists outside it. I find it difficult to know how to show up in this body and brain. It seems to change faster than I can adjust.
Facing mortality is easy. Living with mortality is a the real challenge.