Willed Helplessness Is the American Condition

If a pandemic is a lens onto how we understand our moral responsibility to the community, this moment of risk discourse is revealing that we don’t care about one another very much. In place of yesterday’s calls to “flatten the curve,” today a kind of willed helplessness has stiffened into place, an emotional rigor mortis.

On the day last spring that a federal judge ruled against the CDC’s mask mandates on public transportation, I got tangled up trying to adjust my son’s mask before entering his kindergarten, the chill air biting my fingers. The wind howled, and I felt like howling too. Months later, I still do. In the third year of the coronavirus pandemic, we as a nation have largely resumed life as normal: We’ve dropped mask mandates, made information about case rates harder to access, adopted the sunny view that Omicron is “mild.” But some of us have had a hard time ignoring the ongoing risks, in my case because I have a complicated health history.

The reality that an infection can trigger a cascade of aftereffects capable of ruining–or permanently altering–lives is not abstract to me. I had a condition that closely resembled long COVID for more than a decade, a result of untreated Lyme disease. It manifested as brain fog, fatigue, dizziness, and the kind of dysfunction of the nervous system that COVID-19 can trigger. What no one understands until you have the experience is that while such an illness may not necessarily kill you, it brings death with it: the death of all kinds of once-vivid possibilities and dreams. What long COVID can deliver—suffering without much hope of relief, without a plan—is present in my mind. When you live at the edge of medical knowledge, you lack a clear path forward.

To get ill is a consequence of being mortal. But the ways in which we get sick and experience disease are shaped by social constructs and public-health measures. There is the disease, and the experience of the disease (your illness), which is shaped by the history of medicine and by politics. Science seeks to find the truth, but it is performed by fallible humans, whose collective power decides whose stories get told, which resources go to whom, and so forth. And right now, “America Is Sliding Into the Long Pandemic Defeat,” as the headline on an Ed Yong article recently put it. Many federal officials and public-health leaders continue to stress the “mild” cases and the trend toward positive outcomes—see President Joe Biden saying he “worked” through his recent infection—rather than reckoning with ongoing waves and the grim early data about long COVID’s prevalence.

[Read: Of course Biden has COVID.]

We have two problems, in short. The first is that the pandemic is very much not over, whatever we might wish; the second is that we are pretending it is over. To be sure, at some point, we all must make our own risk assessments. Yet Americans may not have a clear sense of how out of control the pandemic remains or how vulnerable many of us are to its long-term effects. New variants, such as BA.5, have properties of “immune evasion,” meaning that they are able to make you sick even if you are vaccinated or have already had COVID, allowing for more frequent reinfections and raising the specter of a troublingly limited immunity, and, possibly, new long-term consequences  each time. Importantly, vaccines still limit deaths and hospitalizations, and seem to lower the risk of long COVID—but they can’t be counted on to prevent it.

Long COVID is likely an umbrella term for a handful of different conditions. In some cases, it can bring with it mild dysfunction; in others, however, it is debilitating, and can mean the radical upheaval of one’s life. The current figures for long COVID’s prevalence are staggering: In May, the CDC released a study suggesting that nearly one in five people ages 18 to 64 who contract COVID-19 may develop long COVID. That suggests that currently 7.5 percent of American adults are living with ongoing effects of COVID. A March report from the Government Accountability Office found that up to 23 million Americans had developed long COVID. Even a more conservative study found that as many as 5 percent of those infected with Omicron end up with long COVID.

A big problem is that we still don’t know exactly what causes or how to treat the most notorious long-COVID symptoms, including brain fog and fatigue. But there is promising science out there. Mounting evidence suggests that the coronavirus can persist in parts of the body after acute infection; that it can cause minute blood clots throughout the vascular system; and that it can trigger immune dysfunction and autoimmune activity. Turning these leads into therapeutics and effective rehab should be an urgent priority, in part because conventional methods, which involve “pushing through it,” can make matters worse.

David Putrino, the director of rehabilitation innovation for the Mount Sinai Health System in New York, noted in a June talk at the Aspen Ideas: Health festival that long COVID can be progressive, and many people don’t even realize they have it—but are likely to get sicker as time goes on. This progressive aspect of the disease is often missed in the media: Even folks with “mild” long COVID can end up unable to leave their house or bed as time goes on, researchers have told me.

Then, too, long COVID can affect the young. We say that the elderly are the most “at risk” from COVID (meaning “most likely to die”), but long COVID poses a serious risk to young people whose future, limited by impairment, may now look radically different. Data from Putrino’s clinic found that the median age for those with long COVID is 42. Already, this shadow pandemic is bringing with it large-scale social shifts: On July 19, Katie Bach, a senior fellow at the Brookings Institution and a workforce expert, testified to a House subcommittee hearing on long COVID that the estimated effects were equivalent to 3.3 million Americans—2.4 percent of the full-time workforce—leaving their full-time job. Trying to address the problem, Congress has devoted $1.15 billion to the National Institutes of Health’s RECOVER, a series of research initiatives designed to understand long COVID, and the Biden administration has just released a two-pronged action plan for future research and services. To date, though, the RECOVER work has been mainly observational, lacking the urgency the unfolding disaster merits.

[Read: Long COVID could be a ‘mass deterioration event.’]

People want to look away from the problem—and if you’re not the NIH, that’s understandable: To wrap your mind around the reality of long COVID and its randomness is terrifying. In this sense, to “think” about long COVID is not unlike trying to think about the climate crisis. Claims of empathy are taxing; the general population has never done a good job of looking at the pain of others, let alone been moved to make changes once it does. “No ‘we’ should be taken for granted when the subject is looking at other people’s pain,” Susan Sontag wrote in Regarding the Pain of Others, her critique of the idea that liberal appeals to empathy could stop war.

We do need to balance public safety with mental health; certainly, I’m not calling for lockdowns. All too often, those of us who advocate for more public-health measures around COVID, and more long-COVID awareness, are painted as indifferent to the mental-health crisis of American teens and children. I can say that I have two small children who need the socialization that school and activities bring. But our need to build a new world with COVID is precisely why we should be paying attention to its more vexing aspects. (I’d love to keep my kids mentally and physically safe.)

What could we do? At the very least, we could implement mask mandates when cases rise and prioritize safer air in public buildings and public transportation. (Personally, I think we should all be wearing masks on public transportation until we’ve got a firmer grasp on long COVID.) We could put more resources into booster campaigns and help people stay informed about caseloads so that they can make informed decisions about risk. As a nation, we ought to acknowledge the scope of long COVID and grapple with the social consequences of a mass-disabling or mass-deterioration event, as Ben Mazer has called it in this magazine. The NIH needs to lead with more urgency and innovation than it has to date, listening to the expertise of researchers in infection-associated illness in fields such as myalgic encephalomyelitis/chronic fatigue syndrome. “RECOVER needs to focus on clinical trials, and we need significant integration of post-viral experts,” Hannah Davis, a co-founder of Patient-Led Research Collaborative, told me. We need better diagnosis and timely treatment and workplace accommodations. Politicians must hold insurance companies and disability agencies accountable for the support they owe. We all need to concern ourselves not just with our personal risk of long COVID but with the important collective outcome here: a future where more of us have a future.

The rush to “normalcy” papers over the reality that we are not going back to a world before COVID. Like everyone else, I am nostalgic for that world. But I also don’t want to live in a society that thinks it is okay to sacrifice the vulnerable for its own comfort. There is a difference between the science-backed pursuit of restoring our lives to their fullest possible meaning—the joy of spontaneity—and lying to ourselves that COVID-19 is “just the flu.” We want our old life; we need to build our new one.