As a doctor at the bedside, I try to empathize when anxious patients turn to Google for answers. As an academic physician, I was trained to be skeptical.
Then I got pregnant.
My husband and I were elated when we saw the pink line appear. Obeying societal imperative, we told few people. We embraced interminable headaches and nausea as positive signs.
But then, at a routine checkup, otherwise chatty ultrasound technicians turned stoic and our excitement began to curdle. I found myself on the wrong end of a doctor’s office.
“I’m sorry, but the pregnancy is probably not viable,” my obstetrician said.
My body, unaware of the ultrasound findings, grew increasingly pregnant. Days of tests turned into weeks. Morning sickness struck me as decidedly less charming without the anticipation of a baby.
In this haze of nausea I approached my body as I had been trained to do since medical school. I had an excellent obstetrician, connections to others in the field, and access to medical journals with the training to decipher them. But scientific evidence in pregnancy is scarce, stymied by ethical challenges and cultural biases.
The more I searched for answers, the more I became aware of how few answers there are.
Facing my own unknowns, I found myself turning to a place I never expected to go: Google.
It led me to dozens of pregnancy forums where women crowdsourced information about their bodies. I devoured this ocean of anecdotes. Medical training be damned.
Some women quoted statistics, while others wrote heartfelt narratives in broken English. Partners contributed, too. I found women who endured multiple pregnancy losses, struggled with infertility, lacked social support, suffered chronic illness or couldn’t afford medical care.
I began to see these virtual vignettes as something much more than the shady medical websites I was accustomed to discouraging my patients from using.
I found real comfort in this virtual world. I occasionally cringed at medical misinformation, but more often, I felt humbled by the empathy and support that crossed borders and socioeconomic lines. These voices, so frustratingly absent from public discourse, flourished online.
Roughly a quarter of pregnancies end in miscarriage, though according to a 2015 study in Obstetrics and Gynecology, Americans believed they occur in less than 5 percent of pregnancies. Not surprisingly, about half of women who had miscarried felt guilty and more than a quarter felt ashamed.
Historically, women have been underrepresented in medical trials. Drug companies have little incentive to include pregnant women in their studies and much to lose from a bad outcome. Pregnant women are generally considered a “vulnerable” or “protected” class according to the institutional review boards that regulate academic research, which makes it difficult to get approval for studies.
All of this leads to an incredible amount of outstanding questions on what happens when you’re pregnant, or when something goes wrong while you are pregnant.
While the medical community is right to seriously consider the ethical implications of experimenting on pregnant women; in the real world, pregnant women get sick. They get injured and need surgeries. Some have chronic medical or psychiatric illness. They require all sorts of medications.
With or without the data, things go wrong, and these women and their doctors are still forced to make decisions. Difficult decisions.
One obstetrician I spoke with told me a story about a pregnant woman with a broken ankle whose doctor refused to get an X-ray despite the very low risk to the fetus. In a field with little data to prove anything is completely safe, the default can be to withhold care from women in need. Even as obstetricians advocate for their patients, other doctors balk due to fear of lawsuits. If there is a subsequent miscarriage or birth defect, a doctor may be blamed despite a lack of causative evidence.
These same narratives shame pregnant women for considering their own suffering as relevant in decision-making.
Compounding the anxiety pregnant women and their partners face with these complicated choices is the pressure to keep them secret. We are warned not to announce a pregnancy before the second trimester in case of a bad outcome. We are encouraged to hide our heartbreak.
Ultimately, my pregnancy was not viable. I could have waited for weeks to see if my body would miscarry on its own but instead had a procedure to remove the contents of my uterus. This is less common than a spontaneous miscarriage but by no means rare.
In my pain, I learned that even as a physician with the best intentions, I am often a stranger to my patients’ suffering. There is value to meeting a fellow traveler who can sit beside you and say “I have been here, too.” There is power in connection.
I wish we had more clear data for pregnant women. I wish people felt free to talk about all of the questions and complications and difficult decisions that come with pregnancy. I wish that society spent more time caring about pregnant women and their suffering and less time judging them.
But I am also grateful for all of the voices that I found. Research shows that the public disclosure of miscarriage decreases feelings of isolation in other women.