Cancelled

On uncertainty and chronic illness

I was looking forward to that Zoom call with my friend, the one that I used to see fairly regularly pre-COVID. We were going to catch up virtually, have a glass of wine through the ether and, perhaps, a few laughs. I’d geared up for the online reunion for days.

Then the aches and pains started. The fogginess and fatigue set in, once again, unannounced. It was just there. As it always is — unexpectedly.

Like a quadruped scurrying away with its tail between its legs, I regretfully informed said friend of my inability to connect.

“So sorry,” I texted.

“I’m having a lupus flare and am not up to speed. Can we please reschedule?”

More often than I’d like to admit, variations on this text message have been sent to various friends and family members. You see, living with a chronic and unpredictable illness is to expect — and accept — change.

Change in plans, change in abilities, change in life.

And that’s hard for someone who had previously been able to make plans and follow through with them without difficulty.

I’d always prided myself on being reliable — always — and now, having to reframe my self- perception as anything but is a bitter pill to swallow. It hurts.

The reality of dealing with this disease is that the only thing I can predict is the unpredictable. I don’t know how I’m going to feel from day-to-day. One day I’m good…

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