Managing chronic illness was not in the offer letter.
Join the circus they said. It’ll be fun, they told me. I said, “no thank you” and walked away. But nothing ever goes as planned, does it? So yeah, I woke up one morning, with a bad hangover and a new job title.
So, what’s it like being a reluctant ringmaster? Well, it’s not glamorous. It’s pretty chaotic. The word crazy or even absurd doesn’t begin to paint a well detailed picture.
I spend most of my days chasing appointments by the tail, scheduling tests, disputing lab bills, waiting in queue for the next cranky representative, and trying not to bump into whatever is flaring up any particular day.
Much like running a circus with monkeys flying around, living with chronic illness can be disruptive and exhausting. Explaining or deciphering your symptoms to anyone outside generally gets lost in translation.
So, how do I deal with chronic illness, the madhouse it brings and at times the peanut gallery? Not much.
I've learned most folks don’t want to hear the real answer. If I speak honestly, the majority of people change the subject, tell me I need to be positive and they move on. But this is the thing, I am positive. I am a fighter. I’m not defeated. I’m just tired. I don’t need to be told to keep praying, God’s got it or just stay optimistic. I am praying, I am hopeful, but the truth is I am dying too. I can voice one without tossing the others out with the bath water.
It’s a way of life for the chronically ill. We smile, adjust our top hats, smooth our bowtie and pull ourselves up by our bootstraps. I know I’m guilty of acting like my diseases have suddenly healed themselves and flown the coop. It’s just easier that way.