The next week, I Googled “itchy nipples pregnancy.” Again, I landed on forums, where I learned that this weird symptom was completely normal. Same for “itchy bellybutton pregnancy,” “dark nipples pregnant” and “chicken nauseous pregnancy.”
Even though I had regular visits with my obstetrician, I found myself unusually drawn to these sites, such as WhattoExpect and BabyCenter. While the doctor could tell me that I’d probably be nauseated during the first trimester, women on the forums told stories: throwing up at work, throwing up during sex, throwing up on public transportation. I learned that I was not alone in carrying a plastic vomit bag in my purse at all times or having a bedside stash of Wheat Thins to stave off morning bouts of nausea. In addition to hearing from my doctor that it was “normal to experience discomfort,” I read about how women felt like upturned turtles when trying to roll over in bed and how they — like me — secretly rejoiced when discovering handicapped bathroom stalls, because the bars made it easier to get up from the toilet.
Sure, I had friends and family who’d recently been pregnant, and hearing their perspectives helped (as long as I ignored those who’d “never felt better”). But a simple Google search for a symptom yielded hundreds, if not thousands, of stories. It was pregnancy advice on steroids. And the anonymity allowed for the sharing of experiences too embarrassing to discuss in casual conversation. Nausea, backache, insomnia? Standard water-cooler fare. But vaginal discharge, hemorrhoids, incontinence, pain during sex? Not discussed in polite company. I was reluctant to bring up many of these issues with my obstetrician — why should a stranger know the most intimate details of my sex life?
My experience is not unique: Recent studies have found that pregnant women — in the United States, Norway, Australia, Sweden and Germany, among other places — are increasingly turning to digital sources to supplement their maternal health care. One study found that women valued online health information about pregnancy because it was immediate, reassuring, detailed and entertaining.
For the past several years, first as a graduate student and now as a bioethics fellow at the University of Pennsylvania, I have been studying how the Internet is transforming science and medicine. My research has focused on the rise of do-it-yourself medicine and direct-to-consumer health technology, as well as the potential for crowdsourcing health data. The hottest buzz in digital health these days surrounds artificial intelligence, robotics and big data. But it’s the less sexy and even mundane technologies like online forums that are dramatically reshaping medicine. People are increasingly using these forums to augment their health care — creating a world where, for better or worse, doctors are no longer the sole and authoritative source of medical advice.
As my pregnancy progressed, I found myself relying on two entirely disconnected sources for medical advice. The first was my obstetrician’s office, where I was seen in person once a month throughout most of my pregnancy. This was where I was offered a barrage of genetic tests and screenings, where I received pink pamphlets with photos of smiling pregnant women. This was where I had my weight and blood pressure checked, where I peed in a cup, and where they put cold gel on my stomach and listened to my baby’s heart rate. This was where I went for anything serious, like when I was evaluated for preterm labor at 23 weeks.
The second source was the Internet, where women discussed restless legs, swollen limbs, heartburn, tender breasts, sore bellybuttons, headaches, leg cramps, and anything and everything related to their bladders. They talked about which medications their doctors had prescribed and which techniques they used to relieve their mysteriously symptomatic bodies. The information one woman received from her doctor often conflicted with what another woman had heard from hers, on topics including when to stop exercise and travel, and the value of perineal massage. For me, this sharing of different physicians’ recommendations reinforced the fact that medicine is not an exact science, as it often appears.
It’s probably not a coincidence that so many women are turning to these forums, as a spate of recent reports has highlighted the dismal state of maternal health care in the United States. In my own experience, the postpartum care was the weakest. Women are typically examined by their obstetricians six weeks (at the earliest) after enduring the most physically traumatic experience of their lives. Even though I was still unable to walk without significant discomfort at five weeks, I was repeatedly told over the phone by a nurse practioner at my OB’s office to rest and give it time. It was only after I faked the symptoms of a urinary tract infection — knowing full well I did not have one — that I was able to get an appointment, where the doctor discovered that scar tissue from my second-degree tear was not healing properly. When she said she’d apply “a little medicine” that “might sting,” I knew from the forums that it was silver nitrate and that it would burn like hell.
As a bioethics researcher, I recognize that pregnancy forums are a double-edged sword. On the one hand, they partially relieve the burden on busy obstetricians, and they provide support, comfort and information for pregnant women. But they are also places where misinformation can proliferate: With enough communal support, anything can gain the aura of truth. For example, the notion that infants have developmental “leaps” that correlate with predictable fussy periods — an idea perpetuated by the “Wonder Weeks” book — seems axiomatic within the forums, even though it lacks scientific grounding. More perniciously, it’s not hard to understand how the anti-vaccine movement wins converts when people dominate threads with arguments that vaccines are harmful to children.
In this sense, the rise of pregnancy forums is not trivial — it’s a phenomenon that may have real public health consequences. Studies of these groups have almost exclusively looked at pregnant women’s use of digital technology
and reasons for turning to the Internet, rather than analyzing the accuracy of the content. But I didn’t find the forums to be rife with inaccuracy; in my experience, misinformation seemed to originate more from other online content, like websites with a particular agenda, rather than forums where women come to share their experiences.
And the pregnancy boards fill a void that doctors cannot. Reaching out to one’s doctor will never be as convenient as Googling; their professional advice never as compelling as stories from the crowd. The forums represent the new reality of maternal health care, in which doctors no longer have a monopoly on medical knowledge. The doctor is just one voice in a democratized marketplace of expertise, where other pregnant women (“experts of experience”) offer competing advice and recommendations. Doctors will need to adapt to this new world. For example, rather than cautioning patients against using the Internet, they can become informed about circulating myths and be prepared to counter them.
The pregnancy groups are a cornucopia of patient experiences. Similarly, physicians’ expertise comes not only from formal training and medical literature, but also from anecdotal knowledge over years of learning what has worked for their patients. The forums, therefore, should be seen not as a peril but rather as a resource. And given the dearth of studies on pregnant women — such as on the effects on the fetus of taking prescription drugs — the forums represent an opportunity to crowdsource health information. Indeed, the National Institutes of Health recently launched PregSource, a project to collect data on symptoms such as nausea and insomnia from pregnant women and provide it to physicians and researchers.
Yet based on my own pregnancy experience and my academic research, I do not believe that women will be intrinsically motivated to contribute to PregSource without gaining some benefit, which, on the forums, comes from the sharing of experiences — such as taking comfort in learning you’re not the only one who wants to eat three bowls of ice cream for breakfast. So it will be crucial to develop a platform that allows pregnant women to both input data in a scientifically useful way and to view others’ data.
My reliance on message boards did not end after pregnancy, as I’d expected. They were crucial as well in the postpartum period, when women shared the gory scars of labor — swollen stitches, grape-size hemorrhoids, anal fissures, bowel incontinence, vaginal prolapse, pelvic floor dysfunction — and offered methods of relief, such as homemade perineal ice packs (fill a baby’s diaper with water and freeze it). Online, I did not have to endure disapproving looks from practitioners for not exclusively breast-feeding, and I took solace in the stories of others who were also feeding their babies with formula. Even today, three months after childbirth, I continue to check the forums frequently, to learn how other babies are sleeping, feeding and developing. And while I don’t know members’ names or faces or nationalities, I know I am part of an online community — one that represents the new face of pregnancy.