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Texas Observer: Long COVID Sufferers Demand to Be Heard

Posted in Austin, Journalism, and The Texas Observer

At last, my feature story about long COVID and the people advocating for more awareness and action, part of the March/April 2024 issue of Texas Observer magazine, is now online for all to read:

Most people survive the Coronavirus with their kidneys intact. But not 34-year-old Austin resident Vanessa Ramos. 

An experienced community organizer with nonprofits like the Sierra Club, Ramos was healthy and active before she got infected. Then she caught the COVID-19 virus in December 2021, and symptoms lingered through the new year despite her efforts to focus on healing and recovery. 

“I was trying to prioritize my physical health because I couldn’t lift things; I couldn’t open things,” Ramos recalled. “I didn’t understand why I was getting weaker.”

In 2022, she kept getting sick over and over. Colds progressed to sinus infections. She had fluid in her ears after an infection, which required surgery. She even came down with walking pneumonia. 

“I was getting an infection every month—different bacterial infections, different parts of my body,” Ramos said. 

Initially, doctors didn’t dig deeper, perhaps because Ramos was uninsured. As with any chronic, debilitating condition, accessing medical care can be challenging; quality healthcare is most often tied to employment, and those who are chronically ill may no longer be able to work for long stretches of time.

It wasn’t until last year that a nurse finally gave her a diagnosis: long COVID. But by then her kidneys were failing. Ultimately, COVID—which can attack any organ, including the circulatory system itself—was likely the trigger for her to develop a rare form of vasculitis, a chronic swelling of the circulatory system that destroyed the functioning of her kidneys and continues to threaten her heart and lungs. 

Ramos is out of work, spends up to nine hours a day hooked to a dialysis machine, and is awaiting a kidney transplant. 

The manifestation of Ramos’ long COVID is unique, which isn’t surprising: Experts interviewed for this story said each patient’s illness progresses differently, lending the condition a complexity that frequently hampers diagnosis. At the same time, Ramos is like millions of other Texans who caught the virus and never really got well. According to a 2023 survey from the Centers for Disease Control and Prevention (CDC), up to 15 percent of Texans have experienced some form of long COVID. While COVID-19 is perhaps most well-known for its effects on the respiratory system, it can target almost any part of the body and launch a direct attack on the immune system. Long COVID symptoms most frequently include brain fog, debilitating fatigue after any form of exertion, and extreme dizziness alongside symptoms of dysautonomia (nervous system problems) like vertigo, muscle weakness, and rapid heart rate.   

To the Texans suffering from long COVID—or “long-haulers” as they’re sometimes called—it can seem like the world has moved on and forgotten them. Discussions of COVID mitigation—beyond periodic reminders to get booster shots—have all but disappeared from most public health discussions, and even many medical professionals no longer wear masks after CDC guidelines on masking began to ease in late 2021 and 2022. 

Ziyad Al-Aly, chief of research and development at the Department of Veterans Affairs’ St. Louis Healthcare System and clinical epidemiologist at Washington University in St. Louis, stressed that masks were always meant to be a “stopgap measure” until we developed more sustainable ways of protecting people from getting sick. 

“We lifted the stopgap, and we didn’t develop the permanent solutions, and I think that’s really one of the major failures of the pandemic,” Al-Aly said.

In testimony during a January congressional hearing, Al-Aly compared the impact of long COVID on American lives to that of heart disease and cancer and suggested it could ultimately cost the U.S. economy trillions. 

“Just forgetting about it, sweeping it under the rug is not an option,” he told the Texas Observer. “We must have this national conversation. How are we going to deal with long COVID?”

Read more at Texas Observer.

This was an extremely important piece for me, as I was deeply touched by the suffering of those I interviewed. It was also shocking to realize, as I researched this piece, how many of my own friends are suffering with long COVID. In addition, there seem to be many parallels between long COVID and my own chronic illnesses (ME/CFS and Fibromyalgia)—it seems likely that the research into long COVID is going to provide many new insights into how to treat a variety of mysterious illnesses that often begin with a viral onset.

While I still miss working at the Observer, I’m really grateful that I got to finish this before the layoffs, and that I left with such an important piece as the capstone to my time there. Thanks for reading (and supporting my work)!