We are two COVID long-haulers who are experiencing our one-year anniversaries of being sick. We are working at getting better. Our journeys and symptoms have differed. But together we have hungered for a shared critical framework through which to understand and intervene in the catastrophe that is COVID.
There have now been 540,000 COVID deaths in the United States. This is the immense scale of suffering and loss wrought by the coronavirus and government neglect. As vaccinations slowly bring hope and reprieve, culturally we are only beginning the much-needed process of mourning. There is ample talk of the post-pandemic. But in order to move forward we must move differently.
COVID has compressed time and expanded symptoms. The acceleration of this pandemic is unprecedented: in terms of the infected, dead, and scientific and governmental response. Over this very long, yet surprisingly short year, we long haulers experienced multiple and mutable maladies. In just the two of us the virus has affected our respiratory, neurological, gastrointestinal, reproductive and cardiovascular systems, as well as our emotions, skin, uterus, memory, sleep and motivation. Compression and depression are two of the common characteristics of this COVID era.
To heal through the COVID fog and fatigue, beyond its ruthless drab and its necessary jabs, we need mutations to our culture. From the lessons of long-hauling we share some frameworks for the structural variants to come.
Disclosure and Stigma
Disclosure is a self-aware and political act of revealing something personal that can potentially endanger the speaker. Disclosure opens a cultural space for discourse, knowledge, and connection around things that some people would otherwise want to stay hidden. Stigma is the reverse of disclosure, or perhaps its companion. Stigma is a toll or tool of punishment. It causes and continues silence, hiding, and repression, producing more suffering and harm.
Activists attend powerfully to disclosure and stigma through cultural production. When people self-identify and name an experience, we cultivate a next stage where individual experiences can be linked into a shared cultural analysis from whence community and political possibility emerge. Without disclosure, you don’t get to theory. Without theory you don’t get to politics and action. Individual disclosures, once aggregated and shared, create the possibility for collective societal reckoning. This is one of the lessons of #metoo.
Collective disclosure leads to shared reckoning
One year into COVID, too many of us have not yet disclosed our needs: #longcovid.
A collective and shared disclosure could fuel a reckoning that allows us to confront inequity and ableism. Yet, for now, stigma still prevails over COVID disclosure. Disclosure without health insurance, employment, or shelter? Neoliberalism says these are your responsibility alone, expects your self-cure, and valorizes an impossible and false autonomy of self-care. This is linked to an economic insecurity that demands an unsustainable work ethic. Some of us go to work before, during, and after COVID; others have the privilege of working from home. Stigma can cause people with COVID to sometimes blame ourselves, as if we haven’t monitored ourselves or behaved properly.
A collective COVID disclosure speaks to the urgent need for public healthcare as a right. The coronavirus lays bare how interconnected yet unequal we all are. Mutual aid reminds us of the possibility of our wellbeing. A COVID politics––of and for the long haul––must address the needs of the commons and the systemic causes of infection and illness. One element of this politics is a #PeoplesVaccine. Vaccines must be “available to all, everywhere, free of charge,” not just for rich arms and nations.
COVID is structural
COVID is racist hierarchies and hatred, sexist gaslighting, inequitable access to education and care. COVID is the entanglement of economic and housing precarity. COVID is ableist ideas about what is healthy and normal.
When COVID surges and explodes in one body or community or nation or world it can come to seem inevitable. But neither infections nor inequity need be. COVID may be uncertain but it is not unavoidable. Widespread infections and suffering were preventable, and still are. The public health basics of masks, physical distancing, harm reduction, testing and vaccinations make massive differences. But as we have learned in this long, gruesome year, care and cure require political leadership, a just resource mobilization, and a different cultural orientation toward the pandemic. We need a long-haul politics.
People are unclear where to turn for some sense of reassurance, recourse, possibility, accountability, solution. The despair is further amplified by physical isolation and financial instability. The long hauler feels and knows COVID’s persistence. The long hauler is neither dead nor well. The long hauler confounds medicine’s capacity for knowing. But long haulers who disclose and reckon together co-create new bodies of knowledge, new understandings of the changes afoot. We decompress, reassess, and reimagine together. We seek to make a shared future that everyone can touch.
Mutation as innovation
For too long the coronavirus has caused the shape of our touch to be confined to quadrangles. We have been living in the paradox of screen as care. To gather in groups indoors and unvaccinated was to imperil. So we embraced the mask and enacted physical distancing — to survive and to love. Yet humans need contact. Our challenge is to remain socially connected and politically proximate. We the sick know this too well. There is no thriving alone. There is no bodily or cultural change without collective intention.
Illness necessitates a shared culture of care to counter the conundrum of despair. Basic income is survival. Housing is health. Anti-racism is anti-viral medicine. Dismantling ableism builds access for everybody. We do not own the planet. We belong to it and all our relations.
Even as the virus morphs, the vaccines are saving lives. But vaccines are not accessible to everyone worldwide due to corporate greed and a lack of political will. The vaccines that are available are not taken up by everyone. Yet we live and die in relation. We vaccinate in relation. We hoard in relation. We suffer in relation. We survive in relation. We thrive in relation.
The essays, artworks and theories in the Long Hauling series teach us the power of coordinated and concerted care that evolves over time. Politically, we are all long haulers. We are in this together.
*All images are by Pato Hebert, “Untitled” from the Lingering series, 2020-21.
**This piece was originally drafted in early 2021. It was revised in September, 2021.