The Lessons of Covid-19 and Its Long Haul: We Need Community Care

The Trump administration’s decision to close the Heath and Human Services Office of Long COVID Research and Practice deals yet another blow to our already embattled public health system. This initiative, like the recently terminated Advisory Committee on Long COVID, had signaled much-needed attention to infection-associated chronic diseases, largely overlooked by the U.S. medical establishment.

An estimated 7.5% of adults in the United States suffer from Long Covid, which can affect multiple organ systems with over 200 symptoms from brain fog and sleep problems to joint pain and bedridden fatigue. A diagnosis of Long Covid describes symptoms that continue at least three months after contracting Covid-19. For some, symptoms eventually go away. But for others, symptoms get worse and, frighteningly, new symptoms appear—with no end in sight. Long Covid is variable and unpredictable. I know this because it happened to me.

Covid-19 laid bare our fragile health systems and the necessity of caring for one another.

After escaping Covid-19 for over three years, I developed a moderate case, with fever, cough, body ache, and fatigue. Four months later, when I had almost complete recovered, I suddenly took a turn for the worse. Over the past 15 months I have steadily improved, yet my life remains significantly changed. Aches and pains, post-exertional malaise, and a weakened immune system circumscribe my daily activities. Alongside the challenges of navigating the health conditions themselves is my limited ability to keep Covid-safe amid waning attention to Covid-19—as our government and institutions have abandoned Covid precautions. This puts us all at higher risk of Covid-19 infection, and for those of us with Long Covid this risk is exacerbated—each additional reinfection with Covid exposes us to further complications with Long Covid.

In such a climate of pandemic abandonment, punctuated as early as 2022 when then-President Joe Biden issued his dangerously delusional statement that we were post-pandemic, we can rely even less than before on our government and institutions to save us from either Covid-19 or Long Covid. We must prioritize cultivating our own spaces of care—focusing on prevention, mutual aid, and accommodations for the sick and disabled.

We Need to Cultivate Spaces of Collective Care

The earliest lessons of the pandemic remain true today—we can lower transmission rates through masking, physical distancing, and meeting online, among other precautions. While workplaces, businesses, and public spaces have varied in their implementation of Covid-19 safety, social justice groups, led by disability justice, have led the way from the start.

When the pandemic hit in 2020, my racial justice collective applied our principles of care and justice to Covid-19 safety. We pivoted meetings and gatherings online to Zoom, made use of its breakout rooms for one-on-one debriefs, the chat box for running insights and snark, and the emoji feature for added interpersonal expressiveness. As we learned new ways to build community, it made us more inclusive: Folks who otherwise had barriers to attending in-person—whether that be due to illness and disability or just being out-of-town—could now attend remotely. When gatherings needed to be in-person, like the summer 2020 protests for George Floyd and Breonna Taylor, we still prioritized Covid-19 precautions. Actions either followed traditional modes of large gatherings but required (and provided) masks, or were smaller so that activists could maintain physical distance. For those who couldn’t participate safely due to Covid-19 or physical disability, remote action was possible, such as handling back-end prep work or coordinating check-ins.

These community care practices remain important even during periods of low community transmission—they make spaces accessible to all.

We Must Hold Ourselves Accountable

Five years into the pandemic, even progressive activist groups have moved away from these lessons. Many no longer require masks at meetings and gatherings, or prioritize online options. This leaves each of us to fend for ourselves individually, abandoning the principles of collective care and disability justice—from access intimacy to “we keep us safe”—that had made such in-roads in our communities. If we cannot collectively learn from this “mass disabling event” of our lifetime, when will we? And if progressive activist groups whose common mission it is to make a world free from oppression—where caring for one another is the dominant ethos—ditch pandemic precautions, what hope is there?

To be sure, we still need to push institutions at the local and federal levels to make available personal protective equipment and resources for frontline workers, better access to healthcare, more research on Long Covid and other underfunded chronic conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). These actions would certainly help support the many biomedical doctors who toil tirelessly for treatments despite biomedicine’s limited approaches to chronic illness, as well as the Chinese medicine and other non-biomedicine doctors, not to mention the patient advocacy groups, who have arguably carried the bulk of the care and treatment for Long Covid sufferers.

I believe we have the most control over our small communities of care. Covid-19 laid bare our fragile health systems and the necessity of caring for one another—and for a time many of us heeded that call. Let us renew our attention to keeping each other safe, supporting the most vulnerable among us, and preventing more mass disablement. And for us activists who say we want to create better worlds, let’s model for everyone else how it’s done.