On an unremarkable morning in September of 2010, Abby Norman, a sophomore at Sarah Lawrence College, took a shower. Going through the motions, still mostly asleep, she reached to rinse her hair. “It was as sudden as a thunderclap,” she writes. “A stabbing pain in my middle, as though I were on the receiving end of an unseen assailant’s invisible knife.”
“The data I presented was questioned by others as unreliable, which made me question myself.”
Norman spent the better part of a week willing herself to get better; college was the first place she had felt at ease, and her scholarship and means for staying in New York were contingent on keeping up with her classes. Still debilitated after two trips to the emergency room, where she was prescribed antibiotics and then told she should see a gynecologist, Norman began to realize she might need to take a leave.
This narrative — reconstructed from social media posts, journal entries, and emails to professors — forms the opening of Norman’s debut book, “Ask Me About My Uterus,” which recounts her long and agonizing battle with the poorly understood pelvic pain disorder called endometriosis. What began as a chronicle of her transition from dancer and student to determined patient grew into a book documenting her experience with a mysterious chronic illness, woven with the flaws she observes in the treatment of a disease that plagues at least one woman in 10.
An invisible illness, it can elude years of diagnoses by multiple doctors. There is no reliable blood test, no imaging scan, no urine dip. From the outside, people with endometriosis appear normal. In the days after the episode in the shower, Norman herself was surprised by how completely she hid the searing pain from her roommate. The diagnosis relies on narrative, yet patients find their stories doubted. In Norman’s words, “I was the primary source of data for the investigation into my condition, and yet it often felt like the data I presented was questioned by others as unreliable, which made me question myself.”
When Norman finally undergoes surgery to untwist her fallopian tube, the most immediate source of pain, the gynecologist mumbles something about noticing endometriosis, a comment in the margins of Norman’s operative report. What both her surgeon and the doctor failed to explain was that endometriosis does not resolve on its own, and that if left untreated, it could continue to cause excruciating pain.
Endometriosis is commonly understood as cells similar to those of the uterine lining ending up on other organs, leading to inflammation, scarring, and lots of pain. Women are frequently diagnosed when they are unable to conceive, though endometriosis does not necessarily cause infertility, nor is it cured by pregnancy. Recent research demonstrates that endometriosis exists even in female fetuses, but pernicious misinformation stands in the way of a correct diagnosis, especially in girls who haven’t begun to menstruate, women with no interest in childbearing, and transgender men.
Norman identifies a more pervasive obstacle to proper care: a medical system that doubts, ignores, or normalizes women’s pain. Framing endometriosis as a social justice issue explains why botched diagnoses and therapy abound, and why the dominant view of causes and treatment is the one established by men in the 1920s. The misogyny unearthed by #MeToo is prevalent not only in interactions with adults, employers, and disbelieving doctors, but in the way that grant money is doled out to study diseases whose symptoms are accepted as part of “being a woman.” A simple PubMed search reveals a roughly equal number of articles on male-pattern baldness as on endometriosis, though only one of these conditions can cause an individual to miss work or drop out of school.
‘Ask me About My Uterus” summons powerful testimony from Jhumka Gupta, an epidemiologist whose own bout with endometriosis points up the gender imbalance that informs society’s response to the disease. Even though Gupta’s professional work centers around reducing violence against women, she too found herself unable to speak up about her own health; in an address to the Endometriosis Foundation of America, she recounted scoping out a discreet place to vomit while on a research trip, trying to minimize and mask her symptoms.
Validating women who come to doctors’ appointments with reams of internet print-outs, only to be told not to Google their symptoms.
While Norman’s subtitle is “A Quest to Make Doctors Believe in Women’s Pain,” the memoir form doesn’t always serve that commendable purpose. There is scant discussion of other women, few interviews with doctors, and no direct input from historians or sociologists. This isn’t entirely Norman’s fault, because the medical community and the news media too often fall back on outdated clichés. From her reading, she observes, passages on endometriosis “can read like college term papers written the night before they’re due, wherein a lot of unnecessary words are added to make the paper longer.”
Perhaps for that reason, Norman spends more time discussing her past. It’s an inspiring story: Raised in a trailer by a mother consumed by bulimia, she became emancipated at age 16 and studied hard enough to win admission to a topflight college. She is now an accomplished writer who manages life with chronic illness., And whatever its flaws, this book elevates the experiences of women who come to appointments with reams of internet print-outs only to be told not to Google their symptoms. A book, published with endnotes, validates this process of self-study, and might reach others struggling against an apathetic medical system.
In the end, though, it’s regrettable that “Ask Me About My Uterus” will likely circulate most among those with their own lived versions of this story — people who don’t need convincing that doctors tend to fall back on “this is all in your head.”
Kate Telma is a freelance writer based in Cambridge, Massachusetts, and a recent graduate of the MIT Graduate Program in Science Writing.