“I can honestly say that having had #LongCovid for 22 months, I haven’t once felt close to recovery. This illness isn’t improving for me. It just goes on. It just goes on. I might have a *relatively* better day once in a blue moon but that’s all they are; still nowhere near normal. #TreatLongCovid. For many like me, #LongCovid is not some slow road to eventual recovery (as much as I wish it were). It’s a painful, debilitating, chronic illness that will not get better without effective treatment. It’s as simple as that.”
Long COVID Information AdvocateEven prior to the COVID-19 pandemic, millions of people have been left behind by the medical system. We learned this week that health outcomes drastically change based on race, gender, zip codes and more. COVID-19 is no different. According to the CDC, “COVID-19 data shows that Black/African American, Hispanic/Latino, American Indian and Alaska Native persons in the United States experience higher rates of COVID-19-related hospitalization and death compared with non-Hispanic White populations. These disparities persist even when accounting for other demographic and socioeconomic factors.”
How could this be? Many factors, including systematic racism and ableism; discrimination; the development of mistrust in the medical system from years of mistreatment; exploitation; gaslighting; and disbelief of a person’s own lived experiences among BIPOC and disabled patients, have led to these disparities.
Soon after the COVID-19 pandemic began in early 2020, reports of patients with symptoms that didn’t resolve made headlines. People with chronic illness and those within the disability community advocated on the severity of post-viral illness possibilities linked to the new coronavirus. Disability policy experts warned that COVID-19 could be a mass disabling event, according to The Center for American Progress.
The CDC describes long COVID-19, also known as Post-Acute Sequela of COVID (PASC) or Post-COVID-19 Syndrome (PSC), as the continuation of symptoms related to COVID-19 weeks or months after initial infection. This can include fatigue, muscle pain, cough, mood changes, change in smell or taste, chest pain, shortness of breath, headache, brain fog, sleep problems and more. As of July 2021, long COVID is covered under the Americans with Disabilities Act (ADA). There is not a lot of research yet on long COVID numbers, but early estimates show anywhere from 10 to 30 percent of patients will develop long COVID.
As COVID-19 impacted BIPOC and disability communities at a disproportionately higher rate, there is current concern that this could be the case for long COVID, too. The Journal of Medical Ethics wrote that, “unless clinicians, researchers and policymakers directly address the underlying disparities, the disproportionate burden will further divide the long-term impacts of COVID-19 across racial and socioeconomic lines.”
There is still much to learn about the long-term health impacts of COVID-19. Today’s challenge will give you space to learn more about long COVID and how systematic racism and ableism have created the conditions we see today.