The Risk and Opportunity of Online Fertility Groups

Seeking health advice on the web is precarious. But for some people, internet strangers provide helpful information and emotional support.

When I was first trying to get pregnant, I stumbled upon all kinds of online forums full of people in the interminable two-week waiting period—the time between the day you try to conceive and the day you should take a pregnancy test (according to some guidelines). Here, on the internet, were millions of others wondering the same things I was, attempting to identify any signs they could be pregnant before looking for those two little lines on a plastic stick. Does my nausea mean I’m pregnant? Or just anxious? How about my sudden aversion to my morning coffee? I was turned off by much of the forums’ vocabulary; everything had its own acronym—TTC (trying to conceive), LO (little one), AF (Aunt Flo, that is, menstruation), BFP (big fat positive), to name a few. But I couldn’t help but spend hours scrolling through the posts anyway, getting the information I was desperate for.

Chances are, if you’re a person who is trying to get pregnant, or navigating pregnancy, miscarriage, or reproductive-health complications, you may have found yourself in an online community looking for answers. These internet groups, some of which exist on sites such as Reddit, Facebook, BabyCenter, and What to Expect, are so numerous as to be overwhelming. But it makes sense that there are so many of them, because when it comes to reproductive health, most people have more questions than opportunities for professional medical interaction.

If you’re trying to get pregnant in the U.S., for example, your primary-care provider or ob-gyn will likely just tell you to start trying and come back in a year if you still aren’t pregnant. If you have a miscarriage, depending on how far along you are and the severity of your symptoms, you may not see a doctor at all. And if you’re having infertility or pregnancy complications, a doctor still may not know exactly what the underlying issue is. Pregnancy is an enormous and risky undertaking, which for many people engenders a new kind of uncertainty and anxiety. All of this adds up to a very particular intersection of health care and emotional torment that lends itself to precarious information-seeking on the internet. And though this seems like a recipe for disaster in an age of misinformation—and many if not most doctors will warn their patients against Dr. Google—people find both helpful health-care information and necessary emotional support in these kinds of communities.

When Amanda Bell, a 35-year-old recruiter at a tech start-up in California, experienced a miscarriage in 2019, she came across a Reddit community (/ttcafterloss) for people in her situation: trying to conceive after a pregnancy loss. Even though miscarriage is common and largely unpreventable, the stigma around it can cause shock and confusion. “I was stunned miscarriage had happened to us, a mostly-young and pretty healthy couple in their early 30s,” she told me by email. “I kept Googling and Googling and reading through online forums before I finally—gratefully, indebtedly—found my people on Reddit.” She and her husband had two more miscarriages, and reading about other people’s experiences made her suspect there might be a medical reason she wasn’t carrying to term. Bell learned more from the group about Asherman’s syndrome, a buildup of scar tissue inside the uterus that can make pregnancy difficult. The condition is rare and her obstetrician hadn’t checked for it. When Bell pressed for a test to find out, she was indeed diagnosed. After seeing a specialist to remove the adhesions, she and her husband conceived. Their daughter is now 1. “The comparison of experiences was more than anecdotal—it armed us with the conviction that what I was going through wasn’t normal,” Bell wrote to me. “Instead of the medical community providing answers and support, it was a bevy of women who had either gone through this themselves or were willing to wade through all the details and red herrings with me to help me figure out what we were going through.”

Comparing medical notes with others in the same boat can be helpful for people who have a history of being ignored or stereotyped by medical professionals. Nazanin Andalibi, an assistant professor at the University of Michigan who studies information-sharing in online communities, told me that women and other people of marginalized identities often face discrimination and stigma from health-care providers. Sharing information with peers can help them advocate for themselves when they do get to a doctor. “I’ve also seen the example where people wouldn’t really know how to advocate for themselves in these settings,” Andalibi told me. “Especially first-time pregnant people, not knowing what to ask even, or what they should even be looking for … So these spaces then—in addition to the emotional support—end up providing very crucial information.”

Even with the proliferation of these groups, some people may have to look even more diligently to find a space where they feel comfortable, Andalibi said. “The kinds of Facebook groups dedicated to experiences of pregnancy-loss support, they tend to be very heteronormative and cisnormative.” Although an LGBTQ person may find information they need in a typical pregnancy-loss group, she says, they likely won’t find much emotional support, because you have to “sometimes even defend the choice to want to be a parent.”

Sebastian, a trans man who asked to be identified only by his first name because he isn’t ready to share his family’s fertility journey publicly yet, found a Facebook group that included other trans men and nonbinary people who had gone through egg retrieval. The group was essential when it came to sourcing reliable information for himself and his partner. “In my case reproductive health providers aren’t on average so knowledgeable about trans men’s bodies and the reproductive journey,” he told me by email. Even when queer-friendly providers were affirming of his gender, he said the research they have access to on trans men and reproduction is far from robust. “So anecdotal information directly from people with shared experience is actually necessary to have any picture of what to expect,” he wrote. “It was much more beneficial to me to reach out to spaces where people could answer questions or provide information in gender-affirming/inclusive or non-gendered ways, and where I could hear from people who had also been on testosterone … about what to expect in the egg retrieval process.” Sebastian had a heads-up, then, that he would have to go off of testosterone long enough to restart his menstrual cycle, that he might experience gender dysphoria in this time, and that he’d likely experience a lot of pain and fatigue from all of the hormonal shifts. The group was there for him, too, when after a year-long process of being off testosterone and completing IVF, none of the resulting embryos was viable.

Despite the utility of cross-referencing other people’s experiences, whenever medical information is being shared anecdotally, there’s always risk involved. According to Mayara Costa Figueiredo, a researcher who studies how data-tracking technology can affect people’s health behaviors, myths abound within online communities. Most of the participants aren’t medical professionals, and they can play a significant role in repeating misinformation about how to get pregnant to those determined to find solutions. Sam Hogeweg, a 33-year-old sleepwear designer in New Jersey, moderates a subreddit group that she said helped her discover potential reasons for her fertility struggles that she then suggested to her doctor. Hogeweg has found lots of misinformation in various online communities, but she told me that her group has a strict policy. “We’re very science-minded in the community,” she said. “You can’t make claims basically [that aren’t] fact-checked and backed up by science.” When someone does make a claim in their sub that moderators can’t fact-check themselves or find a clinical trial to confirm, she told me the moderators flag it as such, remind the poster that the internet is not their doctor, and recommend speaking with a doctor or other health-care provider.

Still, not all online fertility communities go to these lengths, which is especially concerning in post-Roe America when access to reproductive health care is becoming more difficult or, for many, going away entirely. Bell worries that these forums may become ground zero for information about abortion access. Some of them may help desperate people find the abortion pill online. But many who are looking for advice on self-administering abortion might find darker parts of the internet that could cause serious harm. In her research, Andalibi has seen that misinformation around pregnancy and pregnancy loss in these groups spreads easily (for instance, unscientific advice on how to avoid miscarrying), which makes it even more important for individuals to “assess the credibility of the types of information that they get.” That kind of self-policing can’t guarantee that most medical-advice seekers will be able to sort through what’s genuinely helpful. The fact remains, though, that for many Americans, our health-care system is impersonal, overtaxed, and inadequate. So despite their potential risks, these online communities where people can connect, share, and find even an ounce of hope often fill gaps that the American medical establishment cannot.