For a long time, Tessa thought about freezing her eggs once she turned 30, so she and her partner could have a child when they felt ready. But her 30th birthday came and went in March, and she’s made no moves to act on her plan.
Tessa, who lives in Massachusetts and asked to be identified by only her first name to protect her privacy, developed Long COVID after a case of COVID-19 last May. Long COVID brought on intense fatigue, made it virtually impossible to exercise without crashing afterward, and worsened a preexisting nervous-system disorder that causes her to feel faint. Tessa is still able to work from home, but most days, she only has the energy to get out of the house for a short walk. At her current energy levels, she says it’s hard to imagine caring for a pet, let alone a child.
“We’re both doing a lot just to take care of me right now,” Tessa says of herself and her partner. “It’s possible we’ll get to a place where we’d be able to [have a child], but it feels a lot harder now.”
For many patients, Long COVID is more than a medical issue. It also affects work, relationships, and life plans—including when, how, and whether to have children.
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According to data from the U.S. Census Bureau, about 25% of U.S. adults ages 18 to 39 who have had COVID-19 have experienced symptoms lasting at least three months—meaning millions of people have had or are living with Long COVID at the peak of their reproductive years. And while anyone can develop Long COVID, women appear to be at higher risk than men.
Pregnancy is a “stress test” on the body, says Dr. Kathryn Gray, a maternal-fetal medicine specialist at Boston’s Brigham and Women’s Hospital who has researched the effects of COVID-19 vaccines among pregnant people. For someone already facing a constellation of debilitating symptoms, it can feel like a test too risky to take.
When Louise (who asked to be identified by her middle name to protect her privacy) asked her doctor if she was healthy enough to get pregnant in early 2021, about six months after developing Long COVID, she got a firm answer: “‘Don’t even think about it.’”
Before that appointment, Louise, who is 37 and lives in California, was hopeful about giving her now 5-year-old child a sibling, despite living with Long COVID symptoms including migraines and fatigue. She’d read that some people with chronic conditions go into remission during pregnancy, at least temporarily, and wondered if that might be true for her.
Louise says her doctor’s dismissal was sobering but has proven wise. Her symptoms have since worsened, and working from home and caring for her child now take most of her strength. She’s essentially housebound, and usually only has enough energy to shower once per week.
“I really don’t think my body could handle” pregnancy and raising a new baby, she says. “If I can’t handle showering whenever I feel like it, then I really wouldn’t be able to handle that extra challenge.”
It’s not entirely clear how Long COVID affects pregnancy and reproductive health because it hasn’t been widely researched. Stacey Missmer, a professor of obstetrics, gynecology, and reproductive biology at Michigan State University’s College of Human Medicine, recently published a paper finding that people with endometriosis are at increased risk of Long COVID, but only after multiple academic journals passed on it. “The lack of curiosity about [women’s health and Long COVID] and the lack of focus on understanding is just not acceptable,” she says.
There is, however, a small amount of research on pregnancy and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition with symptoms that closely resemble those of many Long COVID patients. In one small 2004 study of people with ME/CFS, roughly 30% saw symptoms improve during pregnancy, while about 30% got worse and about 40% stayed the same. After pregnancy, approximately 20% reported improved symptoms, while about 50% got worse and 30% stayed the same.
Despite the similarities between ME/CFS and Long COVID, it’s not clear if those results apply to both conditions. “Patients who have any medical condition going into pregnancy want to know the long-term effects [and chances] of worsening their condition,” Gray says. “We don’t have data right now to guide how we counsel people” with Long COVID.
Researchers do know a bit about how the SARS-CoV-2 virus can affect the reproductive health of both women and men. While there is no research to suggest the COVID-19 vaccine causes infertility, the virus itself can affect reproductive health in multiple ways.
Among men, some evidence suggests that SARS-CoV-2 can impair sperm count and quality, testicular function, and hormone levels, potentially decreasing fertility at least in the short term. Men with Long COVID may also experience erectile dysfunction, studies show, which could make it more difficult to conceive a child.
Among women, there is some evidence to suggest that certain fertility markers are lower for at least a few months after infection, and people who contract COVID-19 during pregnancy may be at increased risk of complications ranging from preeclampsia to preterm birth. And both the virus and its vaccine have been shown to affect the menstrual cycle, at least temporarily.
Some Long COVID patients also experience symptom flare-ups around their periods, according to a paper published in January. That’s the case for Chimére Smith, 40, who developed Long COVID after catching the virus in 2020. “I can always tell when it’s two weeks before my period,” Smith says, because she develops headaches, nerve pain, eye issues, facial pain, brain fog, memory loss, and skin rashes. She doesn’t experience those symptoms as significantly in the two weeks after her period.
Smith says she’s “willing to try anything” that would break the pattern, including removing her uterus—but to start, her doctor has prescribed a low-estrogen birth control pill to see if that helps with her symptoms.
Kate Clancy, a professor at the University of Illinois Urbana-Champaign and author of the forthcoming book Period: The Real Story of Menstruation, says inflammation may be the common link among Long COVID, period changes, and symptom flares during menstruation. “The uterus is very much an immune organ,” Clancy says. It keeps out pathogens while allowing an embryo—a partially foreign organism—to grow safely, and it regularly sheds and repairs tissue. The organ is therefore highly responsive to inflammation and other immune responses, Clancy explains.
Heather-Elizabeth Brown, who is 38 and lives in Michigan, also experienced menstrual changes after being hospitalized with a severe case of COVID-19 in April 2020 and developing Long COVID symptoms including fatigue and brain fog. Brown’s menstrual cycle changed dramatically after her illness, disappearing for months at a time and then coming back heavier than ever.
Worried about what those changes meant for her reproductive health, she visited a fertility specialist for testing in 2022. Her results came back mostly normal. But her doctor told her, “‘We really don’t know how COVID has fully affected your body, so we really don’t know what will happen during a pregnancy,’” Brown says.
“Nobody knows,” she says. “They’re pretty much grasping at straws” when it comes to reproductive health.
Though the unknowns make it scary, Brown remains committed to having a child, whether it requires freezing her eggs, hiring a surrogate, or adopting. She acknowledges that being a parent will be even more difficult than it is for most people, since she still crashes if she pushes her energy too far. But “before I got really sick with COVID, it was a desire of my heart,” Brown says. “I’m not going to let COVID take that from me as well.”
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Write to Jamie Ducharme at jamie.ducharme@time.com