Voluntary helplessness is the American pandemic condition

If a pandemic is a lens on how we understand our moral responsibility to the community, this moment of risk talk reveals that we don’t care much for each other. Instead of yesterday’s calls to “flatten the curve”, today a sort of willful impotence has set in, an emotional rigor mortis.

On the day last spring a federal judge ruled against CDC mask mandates on public transportation, I got tangled up trying to fit my son’s mask before entering his kindergarten, the cold air biting my fingers. The wind was howling and I wanted to howl too. Months later, I still do. In the third year of the coronavirus pandemic, we as a nation have largely returned to normal life: we’ve ditched mask mandates, made case rate information more difficult to access, embraced the sunny view that Omicron is “soft”. But some of us found it hard to ignore the ongoing risks, in my case because I have a complicated medical history.

The reality that an infection can trigger a cascade of sequelae capable of ruining or permanently altering lives is not abstract to me. I had a condition that closely resembled long COVID for over a decade, following untreated Lyme disease. It manifested as brain fog, fatigue, dizziness, and the kind of nervous system dysfunction that COVID-19 can trigger. What no one understands until you experience it is that even if such a disease does not necessarily kill you, it brings death with it: the death of all kinds of possibilities and dreams. once perennial. How long can COVID offer – suffer with little hope of relief, without a to plan– is present in my mind. When you live at the cutting edge of medical knowledge, you lack a clear path forward.

Getting sick is a consequence of being mortal. But how we get sick and experience illness is shaped by social constructs and public health measures. There is illness, and the experience of illness (your illness), which is shaped by the history of medicine and by politics. Science seeks to find the truth, but it is done by fallible humans, whose collective power decides what stories are told, what resources go to whom, etc. And right now, “America is sliding toward long pandemic defeat,” as the title of an article by Ed Yong recently put it. Many federal officials and public health officials continue to emphasize the “mild” cases and the trend toward positive results — see President Joe Biden saying he has been “working” on his recent infection — rather than reckoning with the ongoing waves and grim early data on long COVID prevalence.

In short, we have two problems. The first is that the pandemic is by no means over, whatever we may wish; the second is that we claim it’s more. Certainly, at some point, we all have to make our own risk assessments. Yet Americans may not have a clear idea of ​​how the pandemic is spiraling out of control or how vulnerable many of us are to its long-term effects. Newer variants, such as BA.5, have “immune evasion” properties, meaning they are able to make you sick even if you are vaccinated or have had COVID in the past, allowing for more frequent reinfections and raising the specter of a troubling limitation. immunity, and possibly new long-term consequences each time. It is important to note that vaccines always limit deaths and hospitalizations and appear to reduce the risk of long COVID, but they cannot be relied upon to prevent it.

Long COVID is probably an umbrella term for a handful of different conditions. In some cases, this may cause a slight malfunction; in others, however, it is debilitating and can mean the drastic upheaval of life. The current long COVID prevalence numbers are staggering: In May, the CDC released a study suggesting that nearly one in five people ages 18 to 64 who get COVID-19 may develop long COVID. This suggests that currently 7.5% of American adults are living with the continuing 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 up to 5% of people 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 symptoms of long COVID, including brain fog and fatigue. But the is promising science there. Mounting evidence suggests that the coronavirus can persist in certain parts of the body after an acute infection; that it can cause tiny blood clots throughout the vascular system; and that it can trigger immune dysfunction and autoimmune activity. Turning these leads into therapies and effective rehabilitation should be an urgent priority, in part because conventional, “push through” methods can make things worse.

David Putrino, director of rehabilitation innovation for the Mount Sinai Health System in New York City, noted during a June talk at the Aspen Ideas: Health festival that the long COVID can be gradual, and many people don’t realize not even that they have it, but are likely to get sicker over time. This progressive aspect of the disease often goes unnoticed in the media: Even people with long, “mild” COVID may find themselves unable to leave their homes or beds over time, researchers told me.

Then, too, the long COVID can affect young people. We say the elderly are most “at risk” of COVID (meaning “most likely to die”), but the long COVID poses a serious risk to young people whose future, limited by disability, may now be radically different. Data from Putrino’s clinic found that the median age of people with long COVID is 42. Already, this phantom pandemic is driving large-scale social change: On July 19, Katie Bach, senior fellow at the Brookings Institution and workforce expert, testified at a subcommittee hearing of the Chamber on the long COVID that the estimated effects were equivalent to 3.3 million Americans – 2.4% of the full-time workforce – quitting their full-time jobs. In an attempt to address the problem, Congress has committed $1.15 billion to the National Institutes of Health’s RECOVER, a series of research initiatives designed to understand the long COVID, and the Biden administration has just released a plan to two-pronged action for research and future services. To date, however, RECOVER’s work has been mostly observational, lacking the urgency that the unfolding catastrophe deserves.

People want to look away from the problem — and if you’re not the NIH, understandably: getting a feel for the reality of long COVID and how random it is is terrifying. In this sense, “thinking” long COVID is not unlike trying to think about the climate crisis. Empathy claims are trying; the general population has never looked well at the pain of others, let alone driven to make changes once they have. “No ‘us’ should be taken for granted when the subject looks at the pain of others,” wrote Susan Sontag in Regarding the pain of others, his criticism of the idea that liberal calls for empathy could stop the war.

We must balance public safety with mental health; certainly, I am not calling for containment. Too often, those of us who advocate for more public health measures around COVID, and longer COVID awareness, are portrayed as indifferent to the mental health crisis of America’s teens and children. I can say that I have two young 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 pay attention to its most vexing aspects. (I would like to keep my children mentally and physically safe.)

What could we do? At the very least, we could implement mask mandates when cases spike and prioritize safer air in public buildings and public transportation. (I personally think we should all wear masks on public transport until we have a better understanding of the long COVID.) We could devote more resources to reminder campaigns and help people stay informed about the number of cases so that they can make informed decisions about risk. As a nation, we must recognize the magnitude of the long COVID and address the social consequences of a mass disabling or deteriorating event, as Ben Mazer 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 infection-associated disease researchers in areas such as myalgic encephalomyelitis/syndrome of chronic fatigue. “RECOVER needs to be focused on clinical trials, and we need a meaningful onboarding of post-viral experts,” Hannah Davis, co-founder of the Patient-Led Research Collaborative, told me. We need better diagnosis, timely treatment and workplace accommodations. Politicians need to hold insurance companies and disability agencies accountable for the help they owe. We all need to be concerned not only about our personal risk of long COVID, but also about the important collective outcome here: a future where more of us are. have a future.

The rush to “normalcy” masks the reality that we are not returning to a pre-COVID world. Like everyone else, I am nostalgic for this world. But I also don’t want to live in a society that thinks it’s okay to sacrifice vulnerable people for your own comfort. There is a difference between the science-backed pursuit to restore 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 have to build our new.

Comments are closed.