When Making Plans With Chronic Illness Is Followed by an Asterisk
My spouse recently asked me if I’d come to a friendsgiving party at his office. I hemmed and hawed until he needed an answer; finally I acquiesced.
Then there was the potluck spreadsheet.
He asked if I’d make my “famous” roasted cauliflower soup, and for just long enough my foolish pride got the better of me as I thought of my social anxiety disorder being momentarily overcome by normally daunting strangers complimenting my cooking skills.
Then one sentence quickly brought me crashing back to my reality: “Mind if I put the soup on the list?” Suddenly panic set in again. Once something is on a list, it’s so final. People might rely on it. And if there’s one thing I’ve learned over two decades with chronic pain, it’s that I am not reliable.
I started scrambling for an exit strategy, a contingency plan, a big neon sign that said “Don’t depend on this!” This is how I spend my life: building in escape hatches, or opting out of situations where they can’t be built.
“Can you put an asterisk with ‘contingent on chef’s migraine levels?’” I asked. (In my head, it sounded like pleading, but this was over text, where there is no tone.) “I’ll just take it off if it’s looking potentially bad. No need to complicate it,” he – but that answer left me feeling slightly sick to my stomach.
I spent so many years grappling to come to terms with my disability, not giving people forewarning before having to bail, and it lost me so many friends and burned so many bridges. Learning the importance of declaring my body’s lack of predictability was a hard-won strategy for existing in the world as a person with an invisible disability, and denying that wisdom makes me feel vulnerable and uncomfortable. That one little burst of a punctuation mark sums up so much about how I structure my existence: I live my life with an asterisk always hovering at the edges.
“I’d love to come to your event.” *
“Yes! Let’s have lunch on Tuesday.” *
“Come over and I’ll cook dinner.” *
And an especially painful ones these days: “I will come visit ASAP to meet the new baby!” *
There are some things too big for one asterisk to carry, like out-of-town trips and anything that requires advanced payment. Some days that asterisk weighs so much it feels like a black hole, sucking in any chance I have at an active, social life. Over the years, though, I’ve realized that a visible asterisk does everybody involved far more good than an unqualified statement built on an escape hatch only you know is there.
*Subject to last-minute cancellation based on the very likely possibility of a devastating migraine. Hoping like hell that you will take it for what it is, a sucky situation with no one to blame, and not secretly harbor resentment towards me until it eats away at our friendship until nothing remains but disdain and misplaced guilt over events I couldn’t control.
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Thinkstock photo via taehoon bae.