For many women, miscarriage is a life event with meaning far beyond the medical.
Recent findings of Olga Kuchinskaya, a PhD assistant professor of communication at the University of Pittsburgh, are bringing such nuance to light.
While writing her first book, The Politics of Invisibility: Public Knowledge about Radiation Health Effects after Chernobyl, Kuchinskaya got interested in other forms of “invisible” health topics, namely pregnancy loss.
“[Kuchinskaya’s work] brings medicine and ethics into conversation with the methodology of looking for the invisible,” says Lisa Parker, PhD director of Pitt’s Center for Bioethics and Health Law and a professor of human genetics in the Graduate School of Public Health. The two presented on miscarriage at this year’s Humanities in Health conference. (The event showcased researchers at Pitt who are breaking down disciplinary walls and collaborating across what were once institutional silos—like communications and medicine.)
In 2015, Parker encouraged Kuchinskaya to pursue a project analyzing written narratives about miscarriage. Parker suggested including biomedical peer-reviewed literature, as well as the social media and online forums Kuchinskaya was already analyzing. Kuchinskaya used a technique called grounded theory to identify textual patterns. She discovered that women who write about miscarriage often want to do something about the loss, besides try for another pregnancy.
“Doctors give well-meaning but general answers about the cause of miscarriage,” Kuchinskaya found. “They assume it’s chromosomal without testing, that it’s the age of the mother, or it’s bad luck. . . . It’s not medically explained in 50 percent of cases.” That’s not the case with, say, dementia or heart disease, adds Parker: “Everybody wants to explain those. And with miscarriage, there doesn’t seem to be quite the same groundswell of trying to understand.”
Pitt Med sat down with the scholars to talk about their collaboration.
Can you describe the analysis you conducted?
Kuchinskaya: I looked at specific issues that different authors (researchers, doctors, patients) focus on when they talk about pregnancy loss . . . especially recurrent pregnancy loss. For example, one theme noticeable in texts of women with recurrent pregnancy loss is that [the women] “need to know” what caused recurrent pregnancy loss. Another common theme [was] frustration with doctors’ “bad luck” explanations for recurrent pregnancy loss.
You call miscarriage “socially invisible.” What does that mean?
Kuchinskaya: Compare it with pregnancy. Pregnancy is physically visible, right? There are clear signs of pregnancy, at least in later stages. But when somebody’s going through a miscarriage, especially early miscarriage, there aren’t any [obvious] signs. And . . . there isn’t as much discussion about it; it’s not covered in movies; a lot of women don’t [bring it up].
Parker: I would add that there’s uncertainty: Do you offer condolences or sympathy, or do you just ignore it? It’s not even discussed how people should respond to miscarriage.
Kuchinskaya: Miscarriage is kind of an in-between experience. It’s between infertility and fertility; the woman is not pregnant, but she’s also not not pregnant. And the little embryo is between life and death, and it’s not quite [a] human but it’s not quite other. So it’s this very particular space, but it affects women’s identity very strongly.
What can doctors do to help women cope with miscarriages?
Kuchinskaya: Tell them it’s not something they’ve done wrong . . . and join them in the search for answers.
Parker: In other contexts, we talk about the “diagnostic odyssey” and the benefit that can be afforded by just having an explanation. Not a cure for the disease—to give it a name, to understand where it came from. That can— not for everybody, but for a lot of people—be very helpful to end the odyssey.