I’ve been telling a lot of my friends no these days. No to celebrations that signal an end to COVID-19 restrictions. No to lunch at a restaurant. No to meeting for a beer. No to dinner parties. No to hugs.
It’s been a lonely pandemic for me, and I would love to accept all their offers. But because I have sarcoidosis, a chronic inflammatory disease, and because I take powerful immunosuppressants to treat it, I’m considered high risk for the coronavirus. After the virus hit, I reluctantly followed my doctor’s advice and moved out of my family’s home and lived alone for eight long months. I just couldn’t keep my 17-year-old son permanently locked in his bedroom, but I also couldn’t risk him giving me COVID-19. Thankfully, I’m back home now. Still, I’m running on a deficit of hugs, parties and drinks.
My friends assure me they understand my strict boundaries, but they still give me the look. It’s similar to the look I get in the grocery store when I come in wearing an N95, and all the maskless shoppers cast a sideways glance at me. “Oh, she’s one of those,” I can almost hear them thinking.
It’s been less than two weeks since the Centers for Disease Control and Prevention announced that vaccinated people can basically return to normal, putting the 50% of Americans who aren’t fully vaccinated on an honor system about wearing masks. Since then, there have been a flurry of articles speculating about why some vaccinated people aren’t ready to unmask in stores, hop on airplanes or snag the next reservation for dinner indoors at a restaurant.
Why do some keep wearing masks or following social distancing guidelines? One theory I’ve read is that we maskers actually like all the COVID-19 restrictions, that we’re introverts and we’d rather keep following safety protocols simply to avoid unwanted social interactions. Or perhaps we’re traumatized by the pandemic. Maybe we lost a loved one, or we’re health care workers recovering from the tide of death, or someone we know got long COVID-19. Or maybe we’re just anxious. Why won’t we nervous Nellies get with the program, accept the positive preliminary data on all three FDA-approved vaccines and unmask? We’re harshing America’s mellow, serving as visual reminders of times best left behind.
I keep wearing masks inside public places and I won’t go to parties, restaurants, bars or the gym, but it’s not because I want to be a downer. I’d love to return to my pre-pandemic life. But I am one of the more than 10 million Americans who are immunocompromised. Some of us have wonky immune systems, others take medications that suppress our immune function. Prednisone, a drug prescribed for a range of health conditions, is just one in a long list of medications that undermine immunity.
The CDC was clear when it changed its mask recommendations that those of us who live with compromised immune systems should “talk to our doctors” before tearing off our face masks and giving hugs. But this awareness that immunocompromised people might have to follow different rules doesn’t seem to have filtered down into the general consciousness. Maybe that’s because this caveat was buried about seven paragraphs into the CDC’s statement.
I’ve talked with my doctor many times. I have a few issues that concern him. First is the sarcoidosis I’ve had for 17 years. Next is my body’s inexplicably feeble immune system, which slacks when it comes to producing infection-fighting antibodies. Finally, I take two hefty immunosuppressants to treat my underlying disease. Like a lot of Americans, I stay functional by taking medications that weaken my immune system.
“I have no detectable antibodies for COVID-19 even though I’m fully vaccinated. Whether this means I have zero protection from my Moderna shots is also a question mark. Immune function is complex and involves more than antibody production. But my doctor sure didn’t seem thrilled with my antibody test results.”
Nobody yet knows whether or not COVID-19 vaccines are effective — fully or partially — for those who are immunocompromised. Not my doctor, not the CDC, not any of the experts I’ve consulted. I have no detectable antibodies for COVID-19 even though I’m fully vaccinated. Whether this means I have zero protection from my Moderna shots is also a question mark. Immune function is complex and involves more than antibody production. But my doctor sure didn’t seem thrilled with my antibody test results.
In terms of vaccine effectiveness for those who are immunocompromised, it would help if someone were out there collecting comprehensive data on this issue that affects about 3% of all Americans. But there isn’t. Not the drug companies that produced the three FDA-approved vaccines. Not the CDC, the National Institutes of Health or anyone else in the federal alphabet soup. Academic medical institutions are trying to piece together data on a patient-by-patient basis. But that’s both idiosyncratic and challenging. Patients at a transplant clinic in New York have different medical issues and take different medications than those at a cancer center in California or a sarcoidosis center in Colorado. Some of these data sets produce contradictory results. It’s like comparing very small sample sizes of apples and oranges.
My doctor isn’t telling me to push the panic button. I don’t need to hide under my bed for the foreseeable future or cut myself off from all human contact. But he said I should be cautious. This means that I shouldn’t be indoors with unmasked people, particularly in larger groups like you find in restaurants, bars and parties. Fewer than half of the people in Montana have been fully vaccinated, so my odds are pretty good that at least a few of the bare and smiling faces I see are cheating on the honor system. This means they could give me the coronavirus, even if they don’t yet know they’re sick. I’m lucky that my immediate family is fully vaccinated. Hopefully, their vaccines will protect me at home from whatever exposures they have out in the world.
“Hopefully” is a word I’m used to living with. I’ve gotten a lot nebulous medical advice over the years. Having multiple unknowns is a normal part of living with a rare form of a rare disease. But I’m not used to having my personal medical judgment calls second-guessed and my motivations psychoanalyzed. When I underwent chemotherapy for a decade, I regularly wore masks in public to avoid opportunistic infections. It never felt like a moral issue until now.
Why are we wasting time and energy questioning the reasons some of us feel safer in masks, safer avoiding restaurants, safer not celebrating normal? I have medical reasons for keeping my distance. So what if others just feel more comfortable and, yes, less anxious in masks? Since day one of this pandemic, we’ve been too often left to our own individual assessments of best judgment and common sense to survive this. Why stop now? Why point fingers at those following their inner compass or doctor’s orders?
Like everyone else, I’ve gone through a lot since March 2020. I yearn to chat over dinner with my best friend or to get on the treadmill at the gym. But I can’t. Not yet. I’ve made sacrifices all along to keep myself safe. My family has, too. So even if my masked face ruins someone’s effort to manifest that life has magically returned to pre-pandemic normal, I plan to keep following my doctor’s recommendations. I plan to wear a mask. Call me anxious or introverted, but I want to stay healthy. And alive.
Rebecca Stanfel is a freelance writer and patient advocate for the Foundation for Sarcoidosis Research who lives in Helena, Montana.