My family showed me how devastating long COVID can be. My reporting showed me it’s even harder for people of color.

Time and again, the COVID-19 pandemic has revealed the most dysfunctional facets of public health policy. It has widened the gaps between those who have access to health and those who endlessly struggle through chronic conditions or die preventable deaths. Systemic racism helps explain why these disparities have fallen largely on Black, Indigenous and people of color.

Even before the pandemic hit, many communities were in crisis. Rising drug overdoses and suicides, food insecurity, economic inequality, racism and more have plagued certain populations more than others. When the novel coronavirus began rapidly spreading in spring 2020, it only exacerbated these inequities. People of color generally had less access to treatment, vaccines and health insurance, and were more likely to work in essential positions that increased the risk of exposure. And they were and are more likely to be hospitalized or killed by COVID.

But we also know that surviving a COVID infection is often just the beginning. Some people experience long-lasting and debilitating symptoms for months or even years after contracting the virus. This condition, named long COVID by the patients suffering from it, currently affects one in five American adults, according to estimates from the Centers for Disease Control and Prevention.

When I started reporting on this project in March 2022, there wasn’t much data on long COVID and how it was specifically affecting communities of color. It wasn’t a question many public health officials were asking, although that has since changed to some degree. Long COVID coverage was sparse, with even fewer reporters seemingly curious about long COVID disparities. That has also changed, but not much and the lack of data on this topic still leaves many questions unanswered. 

I had two goals with my project: One was an assignment for Scientific American that aimed to illuminate the scientific data available on long COVID and systemic racism, highlight disparities, and uplift the public health workers seeking to address this emerging crisis.

It’s hard reporting on information that isn’t there, especially for a science publication that seeks out rigorous and well-vetted scientific data. But I dug as deeply as I could, requesting information from agencies like the California Department of Public Health and the heads of the RECOVER study led by the National Institutes of Health. I scoured the available literature to see what research had been done on the topic and reported on what little existed. And the results so far suggest what many had feared: Long COVID seems to be disproportionately impacting people of color, it’s often undiagnosed and treatment is less utilized.

Meanwhile, I was also working on an assignment for Univision hoping to elevate the voices of people of color with lived experience in long COVID. I hoped for this article to serve as a guide, in both English and Spanish, for anyone who might be suffering from long COVID and not know where to turn. This would at least get them started.

I encountered a health education issue. Many people have developed strange new conditions, such as shortness of breath or heart palpitations, and not realized these were lingering symptoms from COVID infection. I sought to remedy that with the Univision article by providing links to support groups like Body Politic and Survivor Corps, and resources like how to receive disability benefits.

I have witnessed up close how relentless long COVID can be. In late October 2021, my family caught what was most likely the Delta strain. It hospitalized my mother and killed my father. Despite receiving two shots of Pfizer, my wife Riayn and I both became sick as well. While it was insufferable, our cases were not enough to be considered “severe.” I shudder to think how much worse it could have been without vaccination. After a miserable week suffering through the worst disease I’ve had since the H1N1 flu, I fully recovered from COVID. But Riayn did not.

Her symptoms were cyclical, they would come and go. At first, we thought she was better. But then she would be bedridden for a week, with some COVID symptoms reappearing all over again, despite testing negative, but also new symptoms. She experienced migraines, brain fog, fainting, heart palpitations, neuropathy, muscle spasms and a whole gamut of weird, scary, uncomfortable symptoms. None of this was a concern before COVID. By spring, we realized this wasn’t going away and her stretches of being sick began to outweigh her days when she felt normal.

There are occasional bright spots, and we are lucky to have some form of health insurance. However, there was a mourning process involved, as it sunk in that she is now essentially disabled. We don’t know if she’ll ever fully recover. COVID seems to have precipitated in her a condition called ME/CFS, or sometimes just chronic fatigue syndrome, a historically misunderstood and neglected disease that only seems to become more prevalent with COVID.

Reporting on long COVID while seeing its effects firsthand allowed me to better understand what my sources were going through. Their doctors and family members may be baffled by this new condition, but I was at least somewhat familiar with the strange, lingering illness and how it can manifest in so many different confusing ways. I emphasized as best I could with people who shared their stories of losing loved ones, the shame of being unable to work in a hyper-capitalistic society that snubs disability and unproductivity, all while navigating a Kafkaesque health care bureaucracy in a quest for answers.

Asking sources what questions they had about their condition was a great way to find out what wasn’t being talked about enough. For example, the hormonal changes aren’t discussed nearly enough, several sources relayed to me. I know that Riayn’s symptoms can flare up based on her menstrual cycle. But this aspect of long COVID, and many others, aren’t discussed as much, even though it might explain why some research shows women are more likely to contract long COVID than men.

Becoming an impromptu caretaker for my wife while listening to the stories of people who had similarly become reliant on others delivered a breathtaking dose of reality to my daily life. As COVID restrictions are lifted or ignored, this attitude that the pandemic is over has been echoed by seemingly everyone from President Biden on down. But many people with long COVID feel betrayed by this mentality, knowing all too well that even a small infection can have devastating and life-altering consequences. 

In the past six months, a growing volume of journalism has covered the problems of long COVID and systemic racism. But there are still many stories that remain unheard. My advice to others reporting on this topic is the same that I would give regarding coverage of any topic: Give voice to the voiceless, comfort the afflicted and afflict the comfortable.