Still On the Margins: Long COVID Patients of Color
https://disabilityvisibilityproject.com/2023/12/02/still-on-the-margins-long-covid-patients-of-color/
Angela Meriquez Vázquez, MSW
Before getting COVID-19 here in Los Angeles in March 2020, I was a runner for nearly two decades. In fact, the morning of the day I first started feeling sick, I had gone for a great three mile run. It’s been over three years of Long COVID symptoms and I now embrace my new identity as a disabled person of color. Still, it has been a journey of reflecting on my own privilege, and understanding the new (to me) ways in which I and people like me, continue to be marginalized — not just in healthcare or employment, but also in our own justice movements.
With Long COVID, I now have several ongoing chronic illnesses, including myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome or more simply, ME/CFS. It is a neuroimmune condition whose hallmark symptom is post-exertional symptom exacerbation, which means when I push myself past a dynamic, often unpredictable threshold, I will experience a relapse of my worst symptoms like insomnia, trouble concentrating and confusion, sleep apnea, heart palpitations, fevers, and severe migraines. I have developed a strict pacing regimen that allows me to work from home more than full-time, but not do much else, even three and a half years after getting sick. Even as a disabled person of color, I have a tremendous amount of privilege due to my professional employment, skills as a policy advocate and organizer, and citizenship status in this country — all of which have served as essential buffers against some of the worst outcomes of our country’s white supremacist ableism.
Unlike me, at least half to nearly two thirds of surveyed Long COVID patients could not work full-time, according to peer-reviewed research conducted by the Patient Led Research Collaborative, a group of patients with Long COVID that started their peer-reviewed research through the now sunset Body Politic support group. Many patients like me experience unremitting fatigue along with neurological and cognitive symptoms that make it difficult to drive, make decisions, remember instructions, follow conversations, and plan ahead. The Brookings Institute recently estimated that 1.6 million workers are out of the workforce due to Long COVID, which represents an astounding majority of the estimated 2.2 million people that the labor force is missing from its pre-pandemic size.
National data from the Centers for Disease Control and Prevention’s (CDC) Household Pulse Survey indicates that Latinx and LGBTQ people are experiencing Long COVID at disproportionate rates. This is no surprise, particularly for communities of color, as we have overwhelming evidence that marginalized communities who contend with systemic barriers to social drivers of health like adequate housing and income, and safe workplaces were disproportionately impacted by COVID-19 hospitalizations and deaths. This is only compounded for people who are undocumented, many who are frontline workers who had no choice but to risk exposure to survive, and yet even in a global health emergency, were systematically excluded from healthcare and public resources, leading to ongoing and compounding poor health outcomes in immigrant communities.
I am on the mild end of the spectrum of disability of Long COVID patients and have had access to a lot of concrete support from others with ME/CFS. In the early days, these “illders” guided me to the right specialists, and armed me with research on infection-triggered conditions like POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), ME/CFS, and potential treatments to try. Crowd-sourcing this type of historical grassroots wisdom was part of the magic that was born out of the digital organizing that Long COVID and other social justice activists led in online spaces.
This organizing happened in parallel and seemed to generate momentum from the in-person organizing and protests led by Black activists that sprung up in the summer of 2020 after the police murdered George Floyd, an unarmed Black man. My own lifeline, and the lifeline of nearly 15,000 patients from across the globe, was the Body Politic support group, founded by Fiona Lowenstein, who kicked off the movement for Long COVID justice with their op-ed in the New York Times that identified what would become the devastatingly common experience of prolonged, debilitating, largely untreated symptoms after getting sick with COVID-19.
Taking our cues from historical movements for disabled and sick communities such as those with HIV/AIDS, individual patient support grew beyond the sum of its parts to transform into acts of radical activism and civil disobedience, policy advocacy, with leaders in our movement testifying in front of Congress, driving clinical research publicly funded by the National Institutes of Health, and inspiring federal legislation.
Masks are community care❤️🔥😷 free masks: maskbloc.org
• Remember: covid is not over, 50% of infections are asymptomatic, minimum 10% of infections end up in long COVID, re-infections wreck us, COVID spreads and moves like cigarette smoke, think of the people around you and you as people who are all day smoking, it becomes more visual to understand how COVID moves.
• There is no way to “train” the immune system because it is not a muscle. there is a common misconception that exposure to harmful germs strengthens the immune system. viral diseases like COVID, flu, measles weaken the immune system, leaving the possibility of lasting damage. The reality is that you don't build your immunity with repeated infections, vaccines strengthen the immune system by teaching it to recognize pathogens without all the risks. Focusing on infection prevention is key.
• Rapid antigen tests give many false negatives.
• Solving the pandemic was never in the cards for the capitalist world.
• Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception. Any reminder of the existence of a highly-transmissible, highly-dangerous, mass-disabling disease could trigger panic, or worse: organized, militant labor action. Averting this crisis required a careful campaign of culture-crafting; the people themselves needed to become convinced that there was no reason to fight. Consent for protracted mass infection needed to be manufactured.
“The cold truth of the matter is that the motive behind COVID minimization is greed and social control. (…) Solving the pandemic was never in the cards for the capitalist world. Instead, the explicit goal of the ruling class has been to make the pandemic simply disappear from public perception.” Let Them Eat Plague! http://clarion.unity-struggle-unity.org/
#MaskUp #WearAMask #CovidRealist #CovidIsAirbone #LongCovid #YallMasking #DisabledLiberation #DisabilityJustice #HealthSelfDefense
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