Months after the first onset of Lauren Nichols’ COVID-19 symptoms in March of 2020, she still had a laundry list of maladies that seemed to grow by the day: constant migraines, histamine rashes, reproductive issues, fevers, vertigo, and gastrointestinal problems so severe that some days she couldn’t even keep water down. Her neurological issues were so intense that one day, she says she was trapped inside of her shower because she couldn’t remember what the door handle was. Other days, she forgot what her hands were.
“I was the poster child of someone that should be able to recover swiftly, according to the CDC, and I wasn’t getting better — I was getting worse, and I also wasn’t really believed at all,” says Nichols who as a healthy 32 year-old used to walk six miles a day— rain or shine— before the pandemic.
Nichols has unfortunately become another kind of poster child for the virus— that of the COVID long hauler who is experiencing symptoms weeks, months, and some say even years after they were first infected. Estimates range, but it appears that somewhere between 10 and 30 percent of COVID-19 patients will experience symptoms for an extended period of time. One study found half of patients had at least one symptom six months later. Given these estimates, that would mean Long COVID could be impacting between 10 million to 30 million Americans, at a minimum.
“Unfortunately a lot of the people that deal with post viral illnesses are female and unfortunately because of that we aren’t believed — these illnesses aren’t taken seriously, and we’re not further helped, we’re just left to suffer because there’s not a prioritization of supporting females and believing females when they discuss their symptoms,” said Nichols.
Research on Long COVID remains limited but evidence is growing that women experience it at higher rates, with some research showing that middle aged women are particularly susceptible. A researcher at the Mayo Clinic told The Washington Post that 60 to 80 percent of the approximately 2,000 Long COVID patients he’s seen are women. David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital in New York told journalist Ed Yong of the Atlantic that most of the Covd long-haulers he’s surveyed and treated are women and that most, like Nichols, were active and healthy before they got COVID.
One hypothesis for the disproportionate impact of Long COVID on women is that they’ve evolved to have strong immune system responses to viruses to offset the reduced immunity people experience during pregnancy. This would help explain why women are less likely to die of COVID-19 but more likely to experience lasting effects. Other researchers have hypothesized that Long COVID is an autoimmune disease caused by the virus, a type of disease that disproportionately affects women.
Men tend to fare worse in the acute phase of the illness— and the tradeoff may be that they’re less likely to experience lingering effects of the illness.
Some experts have suggested that women are more likely to report symptoms, which is why they may be overrepresented in studies. Women like Nichols believe that it is less about women over reporting symptoms and more about the medical community failing to listen.
“I cannot even explain to you the amount of gaslighting that I’ve had,” said Nichols, who says that doctors chalked her symptoms up to anxiety, depression, and her menstrual cycle.
Today, Nichols is the Vice President of Body Politic, a global network of COVID-19 patients and health and disability advocates working on a variety of health initiatives, including the effects of Long COVID on women. The group started on Instagram, before it moved to a WhatsApp chat of largely women desperate for community and answers after experiencing so little support from the medical and research community. Today, it has swelled to over 10,000 members in over 30 countries.
Nichols says that to ameliorate the problem, public health agencies must stop downplaying the severity of Long COVID, increase research on the issue, invest in disability protections, and make sure patients are at the center of any future efforts— especially the most marginalized patients.
“It’s a problem that no one is really talking about,” said Nichols. “People aren’t really speaking about medical sexism and the racial side of that isn’t really discussed at all, which is absolutely horrid.”