It’s been a year since neuroscientist and neurologist Dona Kim Murphey came down with covid-19.
“I literally thought that was the moment I was going to die,” Kim Murphey said, adding that she gathered her family to express that she wanted a do-not-resuscitate order.
Once she got better, about a month passed. Then she contracted a secondary bacterial infection that sent her to the hospital. After undergoing a strong antibiotic regimen for about four weeks, she recovered to about 85 percent of her baseline health, she said.
In August, she suffered a steep decline. She and her neurologist believe she suffered a small MRI-negative stroke and alien hand syndrome, preventing the 41-year-old from having control over one of her hands. She’s had trouble writing and speaking since then.
“I would think that I had written something brilliantly and put it out there in an email or on social media, and then I would come back to it to reread it and it was rife with errors,” she said.
Kim Murphey is one of a growing number of covid-19 “long-haulers” — post-covid patients with symptoms that persist or recur beyond the initial onset of the disease. Like so much having to do with the novel coronavirus, much is unknown.
But like in Kim Murphey’s case, reports of the condition seem especially prevalent among women.
Though the symptoms vary widely — which is part of the problem — many cite exhaustion, shortness of breath, coughing, muscle or joint pain, chest pain, headaches, fast or pounding heartbeats, a loss or change in taste or smell, insomnia, and problems with memory or concentration. Some report hair loss, rashes, blood clots, and organ damage in the heart, lungs or brain.
The body of knowledge around long-haulers is still forming and often fragmented. Still, some doctors say they see a clear gender disparity in patients being treated for post-covid conditions, an observation that is in line with women facing higher rates of chronic conditions overall.
Ryan Hurt, an internist who leads post-covid syndrome research at the Mayo Clinic, said that of the approximately 20,000 patients who have tested positive for the coronavirus there, roughly 10 percent are considered long-haulers. Sixty to 80 percent of those patients are women, he said.
Patients mystified and frustrated with their symptoms have flocked to social media to find others in the same situation. The most prevalent Facebook groups are showing similar gender splits among long-haulers.
Diana Berrent, founder of Survivor Corps, a group for covid long-haulers, said that of the 150,000 members, 82 percent are women and 18 percent are men. Likewise, Amy Watson, founder of Long Haul Covid Fighters, says that membership in the two large Facebook groups she manages has maintained a fairly constant breakdown of about 80 percent female and 20 percent male. There are about 12,000 people in both groups combined.
Doctors aren’t sure why there may be a difference in how the virus plays out in the long run between men and women. One possibility may be fundamental differences in the immune system, Hurt said.
Aside from biology, there may be deep sociological or cultural underpinnings accounting for the split — simply that women may be more willing to seek medical attention and speak openly about symptoms, especially those affiliated with mood and cognitive issues.
James C. Jackson, a psychologist at Vanderbilt University’s intensive-care recovery center, says that although the higher instances of women reporting long-term issues are notable, he’s hesitant to identify a gender split.
“In my experience, women are relatively more willing than their male counterparts to be vulnerable about the struggles that they’re having in this mental health, cognitive space. That’s a fairly durable finding, I would say, in the work that I’ve done with survivors of various kinds of medical illness, most notably in survivors of critical illness,” he said.
Meghan Beier, a rehabilitation neuropsychologist at Johns Hopkins University School of Medicine, noted that while every patient she has seen for ongoing therapy related to covid-19 has been a woman, that could be a result of many factors.
“We know that in the general population, anxiety is more prevalent in women, which may be one reason it is showing up differentially in covid patients,” she said.
Joann G. Elmore, an internist and epidemiologist at the University of California at Los Angeles, says she wants to see more data before drawing conclusions about the apparent gender split in long-haulers: UCLA just launched a national study.
“I am seeing long-hauler-type symptoms in both men and women,” she said. “I have to admit as a physician, that scares me. Some may think that this is only going to impact those that were terribly ill in the intensive care unit on a ventilator. But we are seeing some of these varied symptoms in young, healthy individuals that had mild cases of covid.”
A common sentiment voiced by long-haulers in online forums — especially by women — is that their reporting of symptoms is dismissed.
“I hope going forward that physicians will treat symptoms of both male and female patients with respect. Historically, there have been both gender and racial biases,” Elmore said. “I worry that patients with real disease may not be taken seriously.”
