Jeanine Hays and husband Bryan Mason on a hiking trail in Napanoch, N.Y. Because her long covid has many symptoms, they take precautions like wearing N95 masks outside. MUST CREDIT: Yehyun Kim for The Washington PostJune 8, 2024, 11:00 a.m. ET
“Bryan and I are learning to live with long COVID,” the 45-year-old said of her high school sweetheart turned husband. “Our way of life is much different.” when it comes to routine diagnoses, and clinicians and public health researchers believe the same to be true with long COVID, even as itsIt’s bad enough patients of color are coping with a debilitating illness, they said. It’s all the more devastating, they said, to feel like they’re being erased — from medical records, public imagination, and policy considerations. Researchers say that in many cases, people are not even being formally diagnosed, meaning they’re suffering and not getting help.
“People had all these things happening in their body, but they hadn’t heard the term ‘long COVID’ from a provider,” said Linda Sprague Martinez, a professor and health equity researcher who has studied the impact of long COVID on Black and Latino communities in Massachusetts. “It’s just like the early days of COVID. The data infrastructure is not there. A coordinated communication strategy is not there,” said Lindsay, who represents the Boston COVID Recovery Cohort as part of the NIH initiative. “And, as a consequence, the infrastructure for clinical care and support is not there.”
Her husband recovered, but Hays started developing what she called “very strange symptoms.” When she stepped out of the shower and onto the tile floor, “it felt like my feet were on fire,” she said. Not that it mattered, she said, because “clearly she wasn’t caring at all about what was going on with me. She just kept going, ‘No, I really think that you have herpes. Take Benadryl. You’ll be fine.’” The doctor, however, never tested her for the viral illness, Hays said, adding that “I was in tears.”
New or worsening symptoms lasting two to three months tend to be “the magic number” when determining if someone has long COVID, said Daniel Lewis, a California internist who founded and leads the Black Physicians Council of Providence Facey Medical Group, which provides care to the Santa Clarita, San Fernando, and Simi valleys in California.