Celebrities' personal stories can be empowering to patients who are struggling to make decisions about treatment options in the face of health challenges. These firsthand accounts from familiar faces and household names add a layer of experience that doctors sometimes cannot provide. One such story appeared in the March 2018 issue of Vogue, where actress Lena Dunham published a deeply personal essay about having a hysterectomy at the age of 31.
Gynecologists should read stories like this to better understand how a decision of this magnitude affects patients on a visceral level. This type of insight is invaluable when guiding patients through treatment options and other decisions they must make following a diagnosis.
Lena Dunham Shares Her Experience of Undergoing a Hysterectomy
In her essay, Dunham wrote about the frustration of dealing with endometriosis over a number of years and her struggle to feel heard. Despite countless vaginal ultrasound exams, during which she had to see the empty uterus that she suspected would never carry a child, doctors could not understand the reason for her extreme pain. She described how difficult it was to discern an empathetic comment by a doctor or nurse about her impending hysterectomy from a condescending one because, in the end, this was her choice, and even her healthcare providers did not always seem to agree.
Dunham wrote that she had long felt that her uterus was somehow defective. Her doctors, with the best intentions, wanted to maintain her fertility due to her age and the fact that she wanted to have a child. When her pain became unbearable, however, she insisted on the hysterectomy. The uterus that was removed from her abdomen was, in fact, defective. She described the doctor's findings as a "Chinatown Chanel purse of nightmares, full of both subtle and glaring flaws." But her gut instincts had been right, and this was in itself very validating. Her decision to have the surgery had been legitimized.
How Do Celebrity Stories Affect How Patients Consider Treatment Options?
After actress Angelia Jolie wrote a piece for The New York Times about her experience of having a double mastectomy, the Sunnybrook Health Science Centre in Toronto reported that its referrals for genetic counseling for breast and ovarian cancer increased by 105 percent. The Washington Post referred to this as "the Jolie effect."
Meanwhile, Harvard Health Publishing reported that after Katie Couric underwent a televised colonoscopy in 1998, screening colonoscopies "soared" for at least a year afterward. These subjects are typically considered taboo and not polite conversation outside of the doctor's office, but that often changes when a celebrity gives credence to these discussions. No one wants to hear about their co-worker's gynecologic problems because the subject feels too intimate, but reading about a powerful celebrity's struggles in this area can help remove some of the stigma.
The Downside of the Celebrity Effect
While it is good to have these sensitive subjects in the spotlight, doctors may feel pressure to provide unnecessary and costly testing.
Patients who face an uncertain medical condition need answers and reassurance. This may come in the form of statistics, probabilities and likelihood. But another way to offer reassurance is through others' stories. Based on the Jolie effect — and, by extension, the Couric effect — gynecologists can expect to encounter more patients asking whether an early hysterectomy is the right choice for them as a result of Dunham's essay.
Patients may worry that their painful menstrual cycles indicate the worst-case outcome. Doctors should be prepared to discuss statistics and other hard information, but they should also lend their patients an empathetic ear. After all, Lena Dunham paid attention to her own body, and her doctors were ultimately surprised by how right she was.
