Uncertainty is baked into living with chronic conditions. Feeling well is not a given when you have RA. The prospect of physical limitation forever lurks. There are parallels between that uncertainty and the risks visited by this pandemic.
Everyone weighs safety against the desire to engage with a dangerous world. Those calculations are not unique to the pandemic. Ask anyone who drives a car. But the pandemic has raised baseline uncertainty for everyone, and it’s raised it even higher for those of us with autoimmune diseases.
Autoimmune diseases, and the drugs that treat them, increase the relative risk of complications or death from COVID. The degree of increased risk isn’t readily quantified. It depends who you are. It depends who you ask. The science is new, and it’s rapidly evolving.
It was easier to shade my eyes from the glare of uncertainty when I was in better health. But I have unanswered or unanswerable questions that affect how I experience this pandemic. Questions like: How does my immune system malfunction intersect with the dangers of COVID? What about the drugs I take to treat my condition? How likely am I to die of COVID or develop long COVID? How well is my vaccination protecting me?
Even if there were simple answers to those questions, they would fluctuate. Researchers (my heroes) are doing the best they can. I can’t know my risks precisely. Even if I could, I have to weigh them against personal, intangible priorities. So, like everyone, I make decisions. I smash my perceived risks and benefits into my pretend actuarial sausage-grinder and turn a crank that spits out questionable safety calculations. Then I act on those calculations. Living with RA during a pandemic is the usual actuarial mash-up writ large.
COVID forced a reckoning with uncertainty upon me. Most days I’m a model follower of public health guidance. I’m trying to stay safe. But some days I hunger for the human connection that comes from momentarily setting aside fear and taking off my mask to visit with a friend. I do it for sanity’s sake. It could cost me. It could kill me! But it probably won’t, and risk-avoidance takes a toll of its own. There is simply no formula. My crystal ball is in the shop, so I can’t see how this plays out. Fortunately, my fear hangs out with hope. I hope my caution will reward me with safety, for instance. Time will tell.
I have larger scale hopes, too, beyond my personal safety. COVID has been cruel, and the cruelty is not evenly distributed. The most vulnerable are hit hardest. The elderly and their underpaid caretakers. Countless people who can’t work from home or afford to take sick time. The unhoused. Non-English speakers. Minorities. Working mothers. The list goes on.
COVID has thrown some of our society’s fundamental flaws into even starker relief. I hope those genies can’t be stuffed back into their bottles. I hope we do some soul-searching about what kind of society we are, and what kind we want to be. I hope we act on the stories the data tell about health and injustice.
I also hope there will be a silver lining in the form of medical breakthroughs. Researchers are working feverishly, gaining a better understanding every day of how immune systems function and where they go wrong. Immune systems gone wrong! Of course, I’m pinning some hope there.
Finally, I hope that the weird and unpredictable manifestations of COVID will lead to better partnership between doctors and patients. COVID patients often have mysterious symptoms. So do people with autoimmune diseases. Taking patient experience seriously, as COVID has required, may make for better science and better health care. Let’s hope.
Photo Credit: MarioGuti / E+ via Getty Images
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