Taking the Woman out of Women’s Health
There is a problem with women’s health today. I’m not talking about breast cancer, menstruation, pregnancy, childbirth, breastfeeding, or menopause. I’m not even talking about violence against women, mental health, aging, or fitness and nutrition, some of the featured women’s health topics on womenshealth.gov. What I’m talking about is a language problem: the problem is that women’s health is called, well, women’s health. Don’t get me wrong. These are serious issues that require careful attention. And yet, I’m beginning to wonder if we should re-think the category of “women’s health” in general. There is something fundamentally flawed with the way “women’s health” issues are primarily sexual and reproductive, and centered around appearance and the home.
Let’s take an example. Endometriosis is a common, chronic gynecological condition thought to affect over 6 million women and girls in the US alone, according to the Endometriosis Association. Literally meaning “inflammation within the uterus,” endometriosis has been considered a disease of the uterus since it was first named in 1921. Endometriosis is thought to develop when cells lining the uterus find their way outside of the uterus (though there is no consensus as to why this happens) and implant throughout the pelvic region, wandering as far as the lung, the nose, and the eye. Over time, these implants develop into uterine satellite stations, building up and breaking down each month in response to hormonal signals. Since there is no place for the shedding tissue to go, they simply form scar tissue and, over time, adhesions that attach to pelvic organs, distorting and binding them together. Typical symptoms include pelvic pain, pain with sex, and infertility. Painful elimination, gastrointestinal issues, and frequent yeast infections are also recognized as symptoms. Treatments focus on subduing or removing these rogue bits of uterine lining through hormonal manipulation or surgical removal of cysts and implants. When all else fails, the final treatment is a hysterectomy, sometimes done with a removal of one or both ovaries. One of the main problems with endometriosis is that there is no cure. Even with removal of the uterus, many women continue to experience intense pain. Something is clearly not working.
There is significant evidence that endometriosis may have little to do with the womb at all. When studied under a microscope, there are hundreds of differences between the cells that indicate endometriosis and cells within the uterus, including their genetics (Redwine 2008, 6; Evans 2005, 114). Endometrial implants appear throughout the body, not simply within the pelvic region. Yet medicine continues to rely on a metaphor of hysteria to understand endometriosis; in other words, endometriosis is characterized as a wandering womb. Although women report symptoms such as fatigue, allergies, and food and chemical sensitivities, and endometriosis has much in common with autoimmune diseases and chronic illnesses such as chronic fatigue immuno-deficiency syndromes (CFIDS), fibromyalgia, irritable bowel syndrome (IBS), and Multiple Chemical Sensitivity (MCS) among others, medicine directs its energies on the uterus.
Steps have been taken toward broadening our understanding of gender and health. Recently, the American Board of Obstetrics and Gynecology (ABOG) published a revised definition that eliminates the requirement that Board-Certified OB/GYNs treat only women. Yet, I argue that, in medicine, an unacknowledged gender bias runs deep. For example, the expanded definition that ABOG recommends nonetheless defines Obstetricians and Gynecologists as physicians who focus on “ the medical and surgical care of women related to pregnancy and disorders of the female reproductive system,” which nonetheless conflates women’s health to female reproductive functioning. Furthermore, while endometriosis is a classic “women’s disease,” it has been found in both men and women, trans* and cisgendered. On January 22, 2014, The Endometriosis Research Center’s Facebook group linked to a post titled “Endometriosis and Transgender: Beyond Gendered Reproductive Health.” The author, Fox, makes a compelling case for de-gendering endometriosis, asking “But what happens if the person with endometriosis is not a woman?” While acknowledging that his experience was remarkably similar to that of most ciswomen, Fox notes that, “it can be problematic to attach a gender to any disease, as gender is so complexly related to social constructions and systems of oppression, power, and control.” And indeed, my research and personal experience have led me to conclude that the womb-centric problem is related to the exclusion of not only LGBTQ experiences and men’s experiences, but also the experiences of women who prioritize reduction of symptoms over reproduction. When I was researching self-help books and memoirs about endometriosis for my dissertation, I grew increasingly frustrated by the lack of recognition for LGBTQ individuals with endometriosis. I only found one self-help book that even used the word “lesbian,” yet the only information given was advice about the additional difficulties faced by lesbians with endometriosis who wished to conceive.
When we conflate women’s health with reproductive health, we downplay the importance of health, and rely instead on gender norms to understand “women’s” issues. Because breast cancer, for example, is a “women’s issue,” there is little social support or funding for men with breast cancer. While most men do not have uterine tissue to wander about their pelvis, endometriosis has been found and diagnosed in cis men who take hormone therapy for prostate cancer as well as in cismen who have not taken hormonal therapy or who have taken anti-estrogenic therapy. Because heart attacks, to take another example, are considered a “men’s health” issue, most women don’t know that the American Heart Association ranks heart disease as the number one cause of women’s deaths in the U.S. Nor do most people realize that the signs of heart attacks in women include “vague” symptoms such as fatigue, nausea, and stomach pain. Women experiencing heart attacks often think they are having minor health problems such as indigestion or the flu, because, as the American Health Association reports, “they are scared and [ . . . ] they put their families first.” Sound familiar?
As I adapt my dissertation into a book called Adhesions: Dis/abling Discourses about Women’s Health, I take this womb-centric focus on women’s health as its focus. Endometriosis is representative of the sexualized and reproductive status of women’s health in general: the myopic focus on the uterus makes us miss the bigger picture. There is a long tradition of focusing attention and resources on women’s reproductive health, stemming from ancient medical writing about hysteria. This includes seeing women’s health issues as situated squarely within the home and family. Interestingly, recent studies have claimed that most nineteenth-century cases of “hysteria” would actually be diagnosed as endometriosis today. Where that leaves male hysterics, I’m not sure. Endometriosis offers a perfect case study for exploring this problem with women’s health. What is needed is not only a de-gendering of women’s health, but indeed a queering of women’s health and a dis/abling of beliefs about women’s health.
When I say that we need to de-gender women’s health, I do not mean that we need to ignore or even downplay the significant effects of gender on health. Indeed, to do so would be irresponsible, even dangerous. What I mean is that we need serious research into how gender ideologies shape our conceptions of disease and how disease shapes our understanding of gender. We need to examine how beliefs about gender work their way into medical science and practice, and how they shape our perceptions of what it means to be a man and a woman, what it means to be ill, and what it means to be healthy.
Cara Jones is currently a Visiting Assistant Professor of Women's Studies at Hamilton College, where she teaches courses in gender, sexuality, and disability studies. She analyzes the common chronic gynecological condition, endometriosis, from a feminist, queer, and disability studies perspective, using an array of sources including memoir, self-help and medical literature.