It’s been four years since coronavirus infections began burdening people with persistent symptoms that were often ignored by medical providers.
A mild covid infection at the beginning of the pandemic upset Jeanine Hays’ immune system, she said, flagging ailments like the way her husband’s drug ads list side effects.
Chronic hives. Hair loss. Tinnitus. Severe nerve pain. Extreme fluctuations in blood pressure. Allergic reactions to synthetic fabrics and processed foods.
The couple keeps an air purifier and EpiPen in every room of their home; They both travel together. And Hays always carries an extra suit of clothes in case what he’s wearing becomes unbearably itchy. “I definitely still feel like a toddler that way,” she said.
“Bryan and I are learning to live with long Covid,” the 45-year-old said of his high school sweetheart turned husband. “Our lifestyle is very different.”
It’s been four years since Covid began burdening people with persistent symptoms that were often dismissed by mysterious medical providers who were suspicious and unwilling to help, according to clinicians and public health researchers — especially when treating patients of color.
For patients of color, this is an all-too-familiar and maddening story.
Health experts and medical studies have found that racist myths that black people are more resistant to pain, combined with doctors’ biases, mean black patients are more likely to be seen as drug addicts and described negatively in electronic medical records. This is true when it comes to routine diagnoses, and clinicians and public health researchers believe the same is true of long covid, although its definition is largely a work in progress.
It’s bad enough for patients of color to cope with a debilitating disease, they said. They said it was even more devastating to feel like they were being erased from medical records, public imaginations and policy considerations. In many cases, people aren’t even formally diagnosed, meaning they’re suffering and can’t get help, researchers say.
Estimates of the prevalence of long covid vary widely. A recent report from the Centers for Disease Control and Prevention showed that nearly 1 in 14 adults say they will experience long-haul covid in 2022.
While the coronavirus took its toll on diverse communities, especially at the dawn of the pandemic, research has suggested that the misery of long covid is falling more evenly across diverse communities. A 2023 analysis of nearly 5 million U.S. patients by The Washington Post and research partners found virtually no difference in the percentages of Black, White and Hispanic patients seeking medical care for long covid-related symptoms within months of being infected couldn’t find it.
But public health experts warn those numbers almost certainly don’t tell the whole story. The data, they warned, can tell a lot about who their provider trusts, who can shop until they are taken seriously, and who has the language to describe their symptoms to medical staff.
“All of these things were happening in people’s bodies, but they hadn’t heard the term ‘long coronavirus’ from a doctor,” said Linda Sprague Martinez, a professor and health equity researcher who has studied the impact of long coronavirus on Black and Latino communities in Massachusetts.
As part of its research, Sprague Martinez’s team conducted 11 focus groups last year: two in English and nine in total in Spanish, Portuguese, Haitian Creole and Cape Verdean Creole. According to her, in focus groups conducted in languages other than English, it turned out that most people had not heard of long Covid until that day. The main reason, she says: a lack of health information in languages other than English, as well as language barriers in health care settings and on the Internet.
