Cancelled

On uncertainty and chronic illness

The Best Laid Plans…

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.

Late Diagnosis

My diagnosis came late in life and swiftly changed everything. Along with the physical acceptance of this illness, there was the mental aspect that was, in some ways, harder to deal with.

One’s sense of self, abilities and the reality of what can actually be achieved are often at odds in situations like this. How it manifests itself is the hard part. Like many who are suffering from a chronic illness, I cancel plans a lot and it pains me – literally.

“The reality of dealing with this disease is that the only thing I can predict is the unpredictable.”

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, the next – not so much. Sometimes it changes from hour to hour. Others, from minute to minute. And that’s frustrating.

The Self-Perception Shift

Who am I, I ask myself?

This is an often-pondered question that my internal voice refuses to mute. And I know I’m not alone.

With those of us who are grappling with a physical ailment — invisible or otherwise — the question becomes an unwelcome yet constant mantra in our minds. Our self-perception that has been shaped by years and often decades has abruptly changed by something beyond our control. This is particularly hard for those of us who have to this point managed to purposefully regulate most aspects of our lives. To realize that the one thing that we had a firm grip on — control — is gone, is to be forced to face the cold, hard truth that life is more often than not, unfair.

“Like many who are suffering from a chronic illness, I cancel plans a lot and it pains me — literally.”

Good Health is a Crap Shoot

The arbitrariness of being diagnosed with any illness is a cruel reminder that one’s days of health and wellness are nothing more than a crap shoot. You could be fine one day, bed-bound the next. Such is the nature of our imperfect bodies, mixed with the factors of genetics and perhaps some plain old bad luck (if you believe in that kind of thing). Sometimes we’re fortunate enough to have a “heads up” about possible ailments because our long-suffering relatives and ancestors had been diagnosed before us. Sometimes, such as in my case, a diagnosis comes seemingly out of the blue, with no obvious rhyme or reason to its existence. These situations, perhaps, are the most difficult to accept.

No warning one day, marked the next. A genetic Scarlett Letter, “A” for “afflicted.” Everything changes after that.

You’re healthy?

Well, count your lucky stars. While you’re counting, hope that the health roulette wheel that belies our daily lives doesn’t land on “afflicted.” If it does, you’re going all-in, whether you like it or not. You’re committed to this game with no hope of ever winning the jackpot.

This isn’t something that any of us want to ponder but is something we must consider. As our population ages, we must collectively accept the realities that include health setbacks that are more likely to occur each year that we live. Good health and well-being are paramount to personal happiness, so to be without these crucial elements is to really ail.

Acceptance…is Hard

Perhaps the most difficult aspect of this new reality is the acceptance of it’s existence. This is it. This is how it’s going to be. And there’s not much I can do about it.

Sure — I can try to mitigate the possibility of symptoms on any particular day by keeping a firm grip on my medication, whether it’s steroids or pain relievers. And even so, they are unfortunately, not the silver bullet that eliminates all pain, all the time. At the best of times, they take the edge off, providing the ability for me to function relatively normally. At the worst of times, they’re completely ineffective.

Which means that I, and others like me, have to accept that we are often at the whim and mercy of our respective illnesses. We may try to keep a rein on what ails us, but at the end of the day, it’s not always possible. As a result, we sheepishly send regrets and scurry off to nurse our internal wounds, sight unseen.

It is at these times that the video is off and the audio is muted. We’re unavailable until further notice.