The Risk and Opportunity of Online Fertility Groups
When I was first trying to get pregnant, I came across all sorts of online forums filled with people during the endless two-week waiting period – the time between the day you try to conceive and the day where you should take a pregnancy test (according to some guidelines). Here on the internet there were millions of other people wondering the same things as me, trying to identify any signs that they might 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 distaste for my morning coffee? I was put off by much of the forum vocabulary; everything had its own acronym – TTC (trying to conceive), LO (small), AF (Aunt Flo, i.e. menstruation), BFP (big big positive), to name a few. But I couldn’t help but spend hours scrolling through the posts anyway, to get the information I was desperately looking for.
Chances are, if you are someone trying to get pregnant or experiencing 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 that they are overwhelming. But it makes sense that there are so many, 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 United States, for example, your primary care provider or gynecologist will likely tell you to start trying and come back in a year if you’re still not pregnant. If you do 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 have infertility or pregnancy complications, a doctor may not know exactly what the underlying problem is. Pregnancy is a huge and risky undertaking that, for many people, brings a new kind of uncertainty and anxiety. This all adds up to a very particular intersection of healthcare and emotional turmoil that lends itself to precarious information seeking on the internet. And while that seems like a recipe for disaster in an age of misinformation — and many if not most doctors will warn their patients about Dr. Google — people are finding both health care information useful and the emotional support needed in such communities.
When Amanda Bell, a 35-year-old recruiter at a tech start-up in California, had a miscarriage in 2019, she came across a Reddit community (/ttcafterloss) for people in her situation: trying to conceive after a loss of pregnancy. Even though miscarriage is common and largely unpreventable, the stigma surrounding it can cause shock and confusion. “I was amazed that a miscarriage happened to us, a pretty young and healthy couple in their early thirties,” she told me over email. “I kept googling and googling and reading online forums before finally, with gratitude and debt, finding my people on Reddit.” She and her husband had two more miscarriages, and reading about other people’s experiences led her to suspect there might be a medical reason why she was not carrying to term. Bell learned more from the group about Asherman syndrome, a buildup of scar tissue inside the uterus that can make pregnancy difficult. The condition is rare and her obstetrician had not checked it. When Bell requested 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 year old. “The comparison of experiences was more than anecdotal, it armed us with the conviction that what I was going through was not normal,” Bell wrote to me. “Instead of the medical community providing answers and support, it was a slew of women who had gone through this themselves or were willing to go through all the details and red herrings with me to help me understand what that we were going through.”
Comparing medical notes with others in the same boat can be helpful for people who are used to 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 others with marginalized identities often face discrimination and stigma from providers. health care. Sharing information with peers can help them defend themselves when seeing a doctor. “I also saw the example where people wouldn’t really know how to defend themselves in those contexts,” Andalibi told me. “Especially first-time pregnant women, who don’t even know what to ask for, or what they should even be looking for…So these spaces, in addition to emotional support, end up providing very crucial information.”
Even with the proliferation of these groups, some people may have to watch even After diligently to find a space where they feel comfortable, Andalibi said. “The types of Facebook groups dedicated to pregnancy loss support experiences tend to be very heteronormative and cisnormative.” While an LGBTQ person might find the information they need in a typical pregnancy loss group, she says, they probably won’t find much emotional support because you “sometimes even have to defend the choice of wanting to be a parent. “.
Sebastian, a trans man who asked to be identified only by his first name because he’s not yet ready to share his family’s fertility journey publicly, found a Facebook group that included other trans men and women. non-binary people who had retrieved eggs. The group was essential when it came to finding reliable information for himself and his partner. “In my case, reproductive health care providers on average aren’t as knowledgeable about trans men’s bodies and the reproductive journey,” he told me over email. Even when gay-friendly providers asserted his gender, he said the research on trans men and reproduction they had access to was far from robust. “So anecdotal information directly from people with shared experience is actually needed to get an idea of what to expect,” he wrote. “It was much more beneficial for me to reach out to spaces where people could answer questions or provide information in a gender-affirming/inclusive or gender-neutral way, and where I could hear from people who had also taken testosterone…on what to expect in the egg retrieval process. Sebastian had then warned that he would have to stop the testosterone long enough to restart his menstrual cycle, that he might suffer from gender dysphoria at that time and that he would probably feel a lot of pain and fatigue from all the hormonal changes. The group was there for him too, when after a year-long process of stopping testosterone and completing IVF, none of the resulting embryos were viable.
Despite the usefulness of cross-checking other people’s experiences, anytime medical information is shared anecdotally, there is always a risk. 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 are not medical professionals, and they can play an important role in repeating misinformation about how to get pregnant to those who are determined to find solutions. Sam Hogeweg, a 33-year-old sleepwear designer from New Jersey, moderates a subreddit group that she says helped her uncover potential reasons for her fertility issues which she later suggested to her doctor. Hogeweg has found a lot of misinformation in various online communities, but she told me her group has a strict policy. “We are very scientific in the community,” she said. “You can’t make any claims basically [that aren’t] fact-checked and backed by science. When someone claims in her sub that the 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 Internet was not their doctor and recommended speaking with a doctor or other health care provider.
Yet not all online fertility communities go that far, which is particularly concerning post-deer America as access to reproductive health care becomes more difficult or, for many, disappears altogether. Bell fears that these forums will become ground zero for abortion access information. Some of them can help people who are desperate to find the abortion pill online. But many who seek advice on self-administered abortion might find darker parts of the internet that could do serious harm. In her research, Andalibi found that misinformation about pregnancy and pregnancy loss in these groups spreads easily (e.g. unscientific advice on how to avoid miscarriage), making it even more important for individuals’ to assess the credibility of the types of information they obtain. This type of self-checking cannot guarantee that most medical advice seekers will be able to sort out what is really helpful. The fact remains, however, 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 a shred of hope often fill gaps that the American medical establishment cannot.