It took Zoey Salsbury six years to get an incorrect diagnosis for her constant pelvic and joint pain.
The first time she mentioned her pain to her doctor, during her freshman year of high school, her pain was dismissed as “growing pains.” She remembers thinking, “Well this growing thing is absolute [garbage] if this is how it feels.”
A few years later, after discussing her pain with her doctor again, she was dismissed as having menstrual pain. Zoey didn’t have any reason to disbelieve her doctor. She trusted her, and doctors are meant to listen to their patients’ needs and do their best. But her pain was constant, and not just localized to her pelvis. Her joints felt like they were on fire.
It took until her junior year of college, 6 years, 4 or 5 different doctors, on the opposite coast of her home city of Seattle, her mother by her side as an advocate, to have a doctor take her pain seriously. She received a diagnosis of Endometriosis, which is a painful disorder wherein the type of tissue lining the uterus, endometrial tissue, grows on other surrounding organs.
Unfortunately, that turned out to be only the beginning.
Zoey spent a year working on treating Endometriosis by using birth control to stop her period. After her pain still persisted, in no way impeded by her lack of a period, she was told she was facing two final options: surgery to cut out the excess endometrial tissue, or medically-induced menopause at the age of 19. She decided on the former.
Zoey awoke after her surgery to hear some of the most devastating news she had ever heard; her doctors had been wrong. She did not have Endometriosis, but Fibromyalgia, a musculoskeletal pain condition often accompanied by fatigue, memory, and mood issues. Her surgery had been useless, and her doctors had not factored her joint pain enough into their original diagnosis.
Zoey’s long, extremely difficult journey to a true diagnosis is unsettlingly common.
In a survey of more than 2,000 women with chronic pain, around 84 percent of women reported being treated differently by their doctor because of their gender at least sometimes, and around 28 percent said this discrimination happened more often than not.
Other numbers are just as shocking: when arriving at the emergency room, men wait an average of 49 minutes to receive pain medication, while women are more likely to wait around 65 minutes.
All of these statistics point to one overwhelming trend; medical professionals are ignoring women’s pain, and the potential for harm cannot be exaggerated. The phenomenon is common enough to even have a name: the Gender Pain Gap.
Despite her experiences, Zoey considers herself fortunate in some aspects of her journey to a diagnosis. “I’ve been pretty lucky in being told it’s not all in my head,” she said. Zoey is not wrong: studies often show that while men receive narcotics for their pain, women are much more likely to receive sedatives, and are more likely to be diagnosed with histrionic disorders. This suggests that despite the progress in the medical community since the Victorian diagnosis of “hysteria,” women’s pain is still often dismissed because they are believed to be over exaggerating.
There are things women can do if they believe their pain is being ignored by their health care professional. Experts recommend taking an advocate to appointments, a loved one who can be a patient’s voice if they feel shut down, or can ask extra questions. An advocate certainly proved useful to Zoey; she says at least one of her doctors only began listening to her about her pain when she took her mother to an appointment.
Dr. Tia Powell, in an interview with the New York Times, advised women to ask their doctors about guidelines for any given situation if they feel they are being ignored. “’Guidelines tend to be fairly objective and data-driven, so women do better when their doctors follow them,’” Dr. Powell said.
Moreover, Zoey herself has recommendations to other patients to avoid going through her experience. She suggests asking a doctor, “If a man had this pain what would you ask him?” This directly tackles a phenomenon known as the “Yentl Syndrome,” wherein women are required to in some way prove they are just as sick as a man in order to receive the same treatment.
Zoey also recommends that other patients keep an extremely careful record of what they’ve told each doctor. If, like her, they’ve had to see multiple doctors and specialists for the same issue, it can be extremely difficult to keep track of which doctor has what information. “Keeping everything with you, if you can, is really important.”
A study on women’s pain treatments, The Girl Who Cried Pain, touches on this as well. The study says that the direct interview style of most doctors when assessing their patients’ pain can put women at a particular disadvantage, as their initial claims of pain are more likely to be dismissed. The format of the physician-led interview often discourages a patient’s questions, which can exacerbate any first instances of pain being ignored, allowing the dismissal to continue.
Health inequities are not exclusive to gender; racial and ethnic minorities also face discrimination by medical professionals, as does the LGBTQ community. But the growing body of research showing the unequal way in which women and men’s pain is being addressed is concerning, and has the worrying potential to erode trust between doctors and patients. Many other women describe having similar experiences to Zoey’s.
This Women’s History Month, while we celebrate the amazing accomplishments of women in the health care and health care advocacy spaces, we also must acknowledge that there is still so much more work to be done in making sure all women are listened to by their doctors so that they can be assessed properly and receive the treatment they need.