A Letter From COVID-19 Exile

Having a chronic illness in a global pandemic is not for the faint of heart or lung. Three years ago, I had a stem cell transplant to halt the progression of scleroderma, an autoimmune disease that led to cardiac and pulmonary fibrosis and left me gasping for breath. I was lucky to have close friends and family support me through my diagnosis and treatments. Today, though I’m in remission, I’m also living in fear of a virus that would absolutely finish off the 50% capacity my lungs have left.  This new battle is in some ways tougher for people like me because we now also have to convince some of those same close friends that this pandemic is a battle worth fighting.

Some are being willfully ignorant, for reasons of politics or pride. (To these folks: if the most empathy you can muster for a friend facing an existential terror is a half-hearted “Well, some may die, but…”, to say nothing of “it’s not about you”, then your moral compass is grotesquely broken.) But others are simply suffering from quarantine fatigue, unsure how much longer they can keep enduring new work environments, homeschooling, isolation, or even bankruptcy and unemployment. They ask, desperately: “Why can’t the high-risk people just quarantine themselves and leave the rest of alone?”

The answer is that most of us in the highest risk group (the immunocompromised, those with preexisting conditions, and our most aged) already are quarantining ourselves. But this alone is not enough to keep us safe.

A Look at Life in Self-Quarantine

My wife and I moved from New York to Baltimore a year ago, a decision that looks more prescient by the day. The biggest reason for the move was as a contingency plan in case I relapsed: It moved me closer to my doctors at Johns Hopkins and closer to family in the area, and let us afford more space if I needed to be isolated for my health. So in a sense, we were prepared for this. Our jobs have let us work remotely throughout the last year, freeing us from the health hazards of commuting and office life.

When COVID-19 reared its head, we had to become more strict, similar to when I returned home from my transplant. That’s because unlike a cold or influenza—both of which could also re-trigger inflammation and fibrosis—I can’t rely on known treatments for deadly secondary pneumonia or antivirals to help me recover. And I don’t know what I’d do if I needed to be hospitalized. So for my safety, I haven’t been outside of our apartment since March 12th, just before Governor Hogan announced the first pandemic restrictions in Maryland. By this, I mean, I haven’t walked into the hallway past my apartment in almost six weeks. I’m not sure when I’ll step outside again, and I may not be able to travel to see my family in person for the rest of the year.

But even then, we aren’t in a self-sufficient pod—and that’s the problem with relying on at-risk patients to self-quarantine. My wife is now solely responsible for contact with the outside world for food, mail, and packages. This puts me at risk if she brings the virus home with her, and every new infection in the community increases that risk. The only information we have to go on is the data from the New England Journal of Medicine, which tells us that if a COVID-19-positive neighbor was in our hallway or elevator within the last three hours, their aerosolized viruses could still be airborne. Every errand is a hazard. So like those on the frontlines in healthcare, my wife has to distance herself from me for a week after she goes outside. We now buy in bulk online and limit fresh produce in our diet, so she doesn’t have to leave-and-quarantine more than twice a month. She only picks up mail and packages late at night to avoid running into any neighbors. We don’t even think about ordering takeout or delivery for something as trivial as a single meal.

For me, this is daily life for the indefinite future. Other at-risk individuals who are less financially stable now have to make even more difficult choices. We’re all alone, under virtual house arrest until either a vaccine is approved or a standard of care is developed that significantly reduces our risk of hospitalization or death. We make these sacrifices quietly, but it will be for naught if we can’t trust that our neighbors will keep our caregivers and family members healthy. Researching to find out when I can leave my home is now my part-time job. The least the healthy can do is to make social distancing a hobby.

Balancing liberty for the sick and the well

So we need broad support to keep vulnerable individuals safe, but how do we balance this with our neighbors’ need to live and earn a living? Last week, Em Carpenter passionately called out some of the worst quarantine despots, and she’s right to do so. Indeed, even your friendly neighborhood government has a habit of taking an earnest effort and turning it into tyranny. But we got here by sending an absolutist, chaotic message: lockdown (whatever that means) or die. This Manichaean thinking has led to my least favorite new Facebook game: which friend has decided that my life is the price to pay for freedom today?

Instead, let’s remember that this is a question of economic burdens. Without any restrictions, we’re placing the costs of dealing with the virus squarely on patients and overwhelmed first responders. With full shelter-in-place and no economic support, we’re transferring that burden disproportionately to small business owners and furloughed or unemployed workers. They’re the ones who asked our original question. We need to release that pressure without putting the risks of infection back on the people who can least afford it. At a high level, it means:

• Continuing to encourage low-effort changes to our behavior, like mask use, throughout the pandemic. (And never forget the authorities who dithered on this advice.)
• Enforcing moderate, targeted policies in areas that are on the upswing, like extensive testing, school closures, and early contact tracing, run by local authorities. Lift these measures only when we reach our health objectives. And if we want people to comply, we need to judge these policies critically by how effective they are at stopping the spread of infection. By this metric, limiting the number of people in a store makes sense; limiting the sections of the store they visit absolutely does not.
• Most importantly: providing heavy state and federal economic support in hard-hit areas that will need stay-at-home or shelter-in-place orders. We cannot stop or cut corners on vital policies like unemployment insurance, transfer payments, or medical cost waivers. Anything less creates perverse incentives that force our neighbors to decide between saving our lives or feeding their families.

Those of us in COVID-19’s crosshairs are in a fight for our lives, and we’re already sacrificing a lot just to stay alive. We know full well that we’re asking our fellow citizens to take on a huge burden, but the answer isn’t to shrug it off and let millions of us die. We have to accept that this is a years-long campaign, and to channel our energy into making the efforts bearable enough for all of us to make it through.