The Pandemic Will End. How Will We Support the Covid Long-Haulers?
Mutual aid is one way to help the millions who’ll be living with
disability and chronic illness
The COVID-19 crisis has been covered by many angles in the past year. Most recently, we’ve seen a lot of anniversary pieces to commemorate the first shutdowns in the United States. The New York Times released an article gathering the quotes, photos, and memories entitled “The Pandemic Became Real When…” which received over two thousand responses from readers. News outlets have covered the death toll, the haphazard re-openings and their fall out, and improvements in vaccine roll out.
Something I notice about the about the coverage so far, though, is that it seems to pre-suppose a neat beginning, middle, and eventual end to the pandemic, especially as vaccinations rates rise and we approach something that will eventually resemble herd immunity. However, for many of those who have contracted COVID, there may not be such a pat end date in mind.
According to Harvard Health Publishing, somewhere around 50%-80% of people who contracted COVID are known as “long haulers,” that is, they continue to experience COVID symptoms at least three months after the onset of COVID-19. Symptoms include fatigue, aches and pains, brain fog, headaches, difficulty sleeping, and inability to exercise or undertake other forms of exertion. Some report that even seemingly simple activities of daily living — such as vacuuming — wear them out. Still others develop chronic damage to their vital organs, including lungs, heart, and brain. As time goes on, and more information about long haul COVID is garnered, the complications of the disease have become known by a new name: post-acute sequelae disease, or PASC.
Because the disease is so new, there are more questions than answers. Researchers can’t say with certainty just who develops long haul symptoms, though they suspect that it is more likely in patients over fifty, those who have other co-morbid chronic illnesses, or those who have suffered more severe COVID-19 symptoms.
As a trauma informed therapist and coach, I’ve worked with several clients who have some form of chronic illness, pain, or fatigue. This is unsurprising, as these conditions are often correlated with trauma, and connected to the effects that the chronic stress and presence of stress hormones such as cortisol can have on the body. A resounding theme when working with folks within this population is frustration and despair at how under researched diagnoses such as chronic fatigue (also known as myalgic encephalomyelitis) are — and how few institutional supports there are in place for those who are living with this diagnosis. Those who receive disability benefits, for example, report living below the poverty line, and risk losing their benefits if they make more than $1310 a month from any part time work. Qualifying for disability isn’t so simple or straight forward, either, and qualifications are often only as good as the medical providers (and therefore means of diagnosis) to which one has access.
When considering the sheer number of people who have reportedly contracted COVID-19 in the United States — thirty million as of February 2021 — and the percentage of those who go on to suffer from long haul COVID, the impact can feel overwhelming. And structural change is slow, as disability justice activists and folks living with disabilities can attest. What, then, can we do, in the absence of adequate structural support being extended to those who need it?
I spoke to a dear friend of mine, B., who has been living with chronic pain and illness for years. One thing we have both witnessed over the course of the pandemic has been the noticeable increase in support for, and participation in, mutual aid. Mutual aid, an indigenous concept, is one way that we can immediately address the needs of huge uptick in those living with disability and chronic illness as a result of long haul COVID-19, circumventing the bureaucracy of structural systems to provide direct aid and cultivate lasting, sustainable relationships of collective, communal care. Here is some of what they recommend.
Specific Mutual Aid Groups
“We need systems of mutual aid that are specific to marginalized groups,” they told me, “supported and funded so that people are paid for their work.” Different groups have different needs, and a one-size-fits-all, top down approach (which we often see in social service agencies and the non-profit industrial complex) is not enough. When B. described this to me, I was reminded of the values reflected in some of the sex worker organizing I’ve taken part in, in the past. For example, nowhere was this value more clearly reflected than in the work I did with the Sex Worker Giving Circle, hosted by Third Wave Fund. A historic grant making group led by and for sex workers, the Giving Circle didn’t just disseminate funds to non-profits that claimed to operate with the needs of sex workers in mind — it only granted funds to groups that were created and led by sex workers themselves. This is in stark contrast to many more mainstream non-profits, which are often staffed and run by people outside of the population they serve, creating hierarchies between service providers and those receiving services. The mutual aid groups we participate in to resist oppression should always be set up in the same way — emphasizing direct aid and the leadership, agency, autonomy, and decision making of those receiving it.
An Emphasis on Mental Health and Trauma
“People need mandatory educational frameworks, implemented at a young age for unlearning bullshit binary systems and sexuality,” B. told me, emphasizing a mental health and a trauma-informed approach. So much of the way our white supremacist, capitalist patriarchy is set up is actively traumatizing, and children learn and internalize these lessons early. Making mutual aid and collective care a central value to raising young people — in opposition to our traditional, individualist, pull-yourself-up-by-the-bootstraps mentality — and emphasizing to children the importance of humility, acceptance, and empathy will go some of the way toward creating a generation of activists working toward the common good of all. It goes without saying that unlearning hierarchical frameworks and embodying more collectivist practices in our own lives should also be habits we are taking the time and effort to form.
In terms of trauma — understanding trauma should not be solely the responsibility of clinicians and service providers. Chances are, you know someone who has experienced some type trauma in their life, whether it is a friend, partner, or family member. Part of being in relationship with others is learning how we impact others, and how we can adjust in order to create safer and more affirming relationships with each other. Being trauma informed is part of this. Luckily there are so many accessible ways to learn this, from books, to podcasts, to the many and varied educational social media accounts that touch on trauma, disability, recovery and resilience.
An Intersectional Approach to Past, Present, and Future
Finally, B. states, we also have to think about racism, “and have actual real history lessons about the harm this country has caused,” as well as a transformative justice framework. We can’t devise where we’re going without understanding where we’ve been and how we got here — in the United States, but also globally. Unfortunately, the type of American history lessons many get in public school systems seem based more on fiction and mythology than fact, with erasure of indigenous history and culture, and Black history being relegated to one month of the year rather than incorporated into the lessons that mainstream education imparts to youth. When I was in social work school, I recall being completely shocked by how much I learned — and how much was missing from my education — purely by reading An Indigenous People’s History of the United States, for example. For those of us who are committed to making change, we need to familiarize ourselves with this history, and incorporate it into our lives with humility. We also need to practice a commitment to relinquishing our power and privilege as much as we can, allowing by-and-for leadership to take the reins in all of the efforts to which we find ourselves drawn.
This might sound overwhelming, but if you break it down, it doesn’t have to be. None of us is responsible for saving the entire world; that concept in and of itself is an individualistic one. Instead, zoom out — ask yourself what issue or injustice breaks your heart the most — and then zoom back in, to find out what local groups and efforts you can support, directly, and — this is important — in the most sustainable way you can. Also — ask the people in your life what they’re dealing with, and what help they need! You can learn a lot simply by asking, genuinely, “How are you?” and then really listening to the answer. We’re up against a lot, it’s true — the pandemic has made that clear and it isn’t over yet and probably won’t be for a while. But we don’t have to be in it alone.