I haven’t met anyone yet who wants to catch the COVID-19 virus just to see how it makes him or her feel. And I can tell you that I don’t want to catch it just to have something to write about. But I have read a story about one person who had the disease and came close to death with it. I’ll tell you, as you read this, you probably will think, “This is close enough for me!” I know, that is what I felt.
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By Fiona Lowenstein
For The Guardian
The narrative is that COVID-19 patients are either hospitalized near death, or ride out a ‘mild’ COVID flu at home. The reality is more complex.
After I was released from the hospital, I assumed I was in the clear. Instead, my symptoms morphed. This spring, I wrote an essay for the New York Times about my experience as a young, apparently healthy person hospitalized by a brutal attack of COVID-19. After my essay came out, I was contacted by media outlets all over the world. In many ways, I was the perfect person to raise awareness about the virus: my initial symptoms neatly fit the CDC description; I was young and lacked pre-existing conditions; and I could prove my diagnosis via a positive COVID-19 test.
But my experience actually became far more complicated. After I was released from the hospital, I assumed I was in the clear. Instead, my symptoms morphed to include issues that were not yet understood to be associated with the virus. I dealt with gastrointestinal problems, sinus pain, rashes, and memory loss. My illness lasted for months. I couldn’t find any public information or patient stories that reflected my experience. I realized there were likely many other patients whose stories weren’t being told.
I’ve been calling this phenomenon “the myth of the perfect patient,” and over the past few months, I’ve connected with thousands of other people living with COVID-19, many of whom also feel left out of the public discourse on the disease. Some of these patients have wide-ranging symptoms or long recoveries, like I did. Others struggle to test positive for the virus, making it difficult for them to “prove” their illness.
Part of the problem is how we talk about COVID-19. The general narrative tells us that people who contract the virus fall into two categories — those who experience acute or fatal symptoms and require hospitalization, and those who are able to ride the virus out at home, like the flu. This dangerous narrative fails to recognize the experiences of “long-haul” COVID-19 patients, many of whom are initially diagnosed with “mild” cases, but remain sick for months. Since my hospitalization, I’ve heard from hundreds of patients with lingering and debilitating symptoms, including prolonged fevers, extreme weight loss, and neurological issues, despite initially mild diagnoses. Many feel isolated and invisible, as mainstream news coverage and scientific studies are only just starting to delve into the experience of what many are now calling “long-haulers.”
Xi Bing Su, a 32-year-old attorney in New York, says that she felt alone in her experience of the virus until very recently, when stories about other long-haulers began to emerge. “I felt so seen, so relieved,” she told me. Su had felt self-conscious requesting more time off from her job, even though her employers were willing to provide it, because she thought most COVID-19 patients recovered quickly. “Seeing more media coverage of the long-hauler experience … and knowing that other people are now more aware of it as well, has made a huge difference to the stress and anxiety I felt about taking extended time off work to recover.”
“My treatment has been sub-par, and in some instances cruel and demeaning,” Vázquez told me. “I never got a positive infection test, so doctors have diagnosed me as an overly anxious, young, Brown woman, not someone still dealing with COVID-19.” Vázquez eventually managed to get an ER doctor to perform blood work, and she says one of her tests showed that she was clotted at 10 times the clinically significant norm; blood clots have been a cause of death in some young COVID-19 patients. But Vázquez is still struggling to find a doctor who understands the long-hauler experience, and is willing to treat a COVID-19 patient without a positive test.
Testing accessibility is a social justice issue; people who have trouble accessing tests and adequate medical care often come from marginalized backgrounds, including the undocumented, the uninsured, people in rural areas, people unlikely to seek care because they have experienced medical bias in the past, and people who lack the resources to travel to testing centers. We often hear that COVID-19 is disproportionately impacting communities of color, especially Black, Indigenous, and Latin populations, but rarely do we hear individual testimonies from patients in these communities. I’ve been interviewed dozens of times about my experience, almost always alone, or alongside other white patients, something I now work to prevent.
There is no perfect patient model for those who contract COVID-19, and the public focus must expand beyond patients who experience classic symptoms and test positive for the virus. There is no perfect patient model for any disease, and attention and care must be given to all patients, especially those who are more likely to be ignored due to their identity or inability to access early testing and care.
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Fiona Lowenstein is a writer, producer, speaker, and the founder of the feminist wellness collective, Body Politic. This essay first appeared in The Guardian.