My chronic illness is too rare, too non-lethal, to warrant much attention. There is no designated global fundraising day, no readily identifiable ribbons to adorn, and certainly no coordinated, corporate-supported, coloured grocery and apparel items to purchase. Were it not for a brief moment of pop culture notoriety as an unintentional running gag cum drinking game rule on House, it’s doubtful you’d have ever heard of it.
Such is life with sarcoidosis, an inflammatory disease the cause of which remains unknown. Characterized by the formation of granulomas, accumulations of immune cells that form lumps or nodules, more than a million people worldwide have been diagnosed with some form of sarcoidosis. Most, like me, have the pulmonary kind which affects the lungs, but it can attack any organ in the body.
Many recover quickly with no lasting impact. For approximately one-third, the disease becomes chronic, remaining active for two to five years. Of those, five to ten percent will endure a lifetime of treatment to combat symptoms and comorbidities. Two percent will die.
I guess I’m one of the “lucky” one-third, though it’s hard to put an exact number on the years my chronic sarcoidosis was active. Even now, six years after the doctor declared my pulmonary sarcoidosis “gone,” I struggle with a body maddeningly less healthful than expected. Or desired.
I no longer think about my sarcoidosis much. I enjoy talking about it even less. After twenty years, the pain and other related bullshit just becomes part of your reality. You adapt and make do the best you can. My experience ain’t great but not so bad compared to others. And I’m thankful to not be one of the two percent. Besides, if the coloured merchandise peddlers don’t see a reason to care, why should I?
Then COVID-19 came along and suddenly having a chronic lung ailment in my medical history felt a tad … relevant. Pre-existing condition, the asterisk on every newscast and government health advisory, is the kind of phrase that grabs your attention if you’ve had any anomalous health issue in your past. If that anomaly was a condition primarily targeting the lungs, all the more so. And if you’re supposedly “cured” of that anomaly but various accompanying symptoms continue, you find yourself in a bit of a quandry. What is my potential COVID-19 doom level?
Oddly enough, I felt little fear back in early March as the pandemic’s vaunted world tour began. Ignorance is bliss, I suppose. With so few reliable facts, it was easy to just acquiesce to the whims of fate. And if it really was “just like the flu,” well I’d had the flu only a couple years ago. Sure, it sucked, but I survived no worse for wear. Having a low benchmark helps.
By no means was I relishing the thought of contracting COVID-19. I’ve had my fill of sick, thanks very much. But I wasn’t in a panic about dying. I didn’t feel exposed or in any greater danger than those around me. And living so far away from elderly family, with nobody in our household employed or using public transit, I was already enduring an isolated life of sorts.
I found myself rather indifferent about the whole experience. In fact, part of me thought it mightn’t be so bad to just get COVID-19 over with already. If I died, I died. If not, I’d have immunity and could return to a normal life, whatever that was. Bandage ripping writ large.
That was three months ago, though it feels more like three years, and a lot has changed since those innocent first days. The world has been through a lot. Both our knowledge and misinformation of COVID-19 has exploded, as expected. We’ve flattened our curves … mostly.
Patience, however, has worn thin. I admit I was genuinely shocked by how well most people were willing to abide the pandemic restrictions. Individualism, selfishness, and bastardized libertarianism is so ingrained in North American society, I only expected a minority to toe the line. We Canadians may not have been perfect at it, but more of us did, or at least tried, than didn’t and that’s not something I’d have bet money on.
But even pleasant surprises don’t last forever. There’s the economy, don’t ya know. Not to mention our profound consumption addiction. The remarkable Black Lives Matter rallies was the last straw for those too self-absorbed to parse the difference between the injustice of systemic racism and the inconvenience of unruly hair. Thus, the great re-opening begins.
I find myself worried now, unlike in March. Not fearful. Not yet. But it’s heading that way. The CDC reporting that COVID-19 patients with chronic illnesses (i.e. pre-existing conditions) were six times more likely to be hospitalized and twelve times more likely to die isn’t bolstering my confidence. Nor is the wildly misplaced sense of resolution to the whole ordeal. As if this staged, in some cases accelerated, re-opening means the COVID-19 pandemic is officially over.
Back in April, a survey of 1600 sarcoidosis patients by the Foundation for Sarcoidosis Research and the University of Cincinnati identified no increased susceptibility to COVID-19 or severity of symptoms. This held true regardless of race, gender, or treatment. That latter point is important considering sarcoidosis is an inflammatory disease and typical treatments focus on moderating the overactive immune system with prednisone, infliximab, or … da da da … hydroxychloroquine.
That’s somewhat comforting. I appear, anecdotally at least, to have no greater COVID-19 risk than any of you. My “pre-existing condition” has not thrust me into the ill-fated over-eighty contingent of the population that we’ve collectively determined to have “had a good run.”
Still, it’s hard to feel optimistic, let alone bold. I don’t think many give a shit anymore. The majority surely won’t care enough to tolerate a second round of self-isolation. Closing up shop for three months was miraculous, but like many miracles it’ll be a one-timer. Unless a pathogen comes along with a 20% kill rate, we won’t be hitting the pause button like that again.
To be fair, it never was about preventing us all from contracting COVID-19. We were just trying to slow its spread to give our health system a chance to prepare, adapt, and accommodate those needing the most intensive of care. Turn a planet of bandage rippers into gentle removers. And learn more about what we were fighting. Mission accomplished?
I’ll continue to remain vigilant. I have to. COVID-19 isn’t gone which means my kinda pre-existing condition could still prove problematic and the dummies are out of their cages. There’ll be no party on the patio for this guy. And I’ll continue to wear a mask when I venture out to retail establishments which, as anyone with a large nose knows, is a real pain in the ass.
The second wave is coming. Wish I knew how to surf.
Hear hear! Astute and timely.