Attention to women’s diseases should reach beyond Angelina Jolie

Updated
By Valarie Kaur
PatrickMcMullan.com via AP Images
PatrickMcMullan.com via AP Images
Ryan McCune

Angelina Jolie’s medical condition is rare and few women could benefit from the genetic testing she received, but her New York Times op-ed has ignited a national conversation about barriers to care for breast cancer. In America today, white women are most likely to receive a breast cancer diagnosis, Asian women are least likely to screen for it, and black women are most likely to die from it.

This is just the tip of the iceberg when it comes to women’s health in America.

Millions more women suffer in silence from diseases less visible than breast cancer. Endometriosis is one of many life-altering diseases that have not benefitted from widespread multi-million dollar campaigns and are absent from women’s health movements. The lack of attention to “invisible illnesses” results in poor quality of care, worsened outcomes, and minimal social support. If we want a world where all women, including women of color, are empowered to make their own healthcare decisions as Jolie did, we must challenge the social, economic and cultural barriers to care—for all diseases.

We are two South Asian American women living with advanced endometriosis, an excruciating disorder where cells similar to the uterine lining exist in other parts of a woman’s body. Endometriosis can lead to organ dysfunction and anatomic distortion, debilitating chronic pain, pregnancy complications, and infertility. Although it afflicts 8.5 million women and girls in North America, comparatively little research and development has been devoted to its awareness and treatment. Our personal experiences expose factors leading to its neglect.

It took us both years to be diagnosed, and the first barrier to care was overcoming cultural shame. Our society causes young women to feel ashamed of their bodies and their bodies’ dysfunctions around menstrual cycles. In many South Asian American households, girls rarely discuss menstruation or sexuality with their mothers, and grow up with stories about infertile women in India who were abandoned or even burned alive by their in-laws.

As young women, we were forced to ”to cover” for missing school, work or family functions due to  stabbing, knife-like pain during and outside of our periods. Endometriosis costs women 10.8 hours of lost work productivity/week. As adults, when we became activists working with marginalized communities with survival histories of mass shootings and genocide, it became even more difficult to prioritize our own suffering as worthy of attention.

Surprisingly, medical doctors did not take our suffering seriously either. Endometriosis can only be diagnosed surgically, and physicians’ lack of awareness delays treatment. We each saw numerous doctors and provided detailed accounts of our symptoms, but they dismissed our pain as “all in our head” while the disease continued to destroy our insides. Like so many women, we were offered birth control pills as our sole defense–without being told of their limited, temporary relief. On average, women with endometriosis must wait eight to 11 years and see an average of five doctors before receiving a confirmed diagnosis.

We finally both underwent surgery, one of us many times, with some of the surgeries lasting up to six hours and requiring the expertise of gynecologic, colorectal, and urological surgeons. Unlike diseases in the public eye, endometriosis lacks a well-organized continuum of care, such as advanced imaging, in-person support groups at hospitals, or case managers to help us and our families cope with its impacts. We also did not benefit from time tested management plans, since rigorous long-term follow-up data on even the most highly regarded surgical approaches are non-existent. And short of more surgery, no definitive means exist to detect whether endometriosis persists after treatment.

We still had more resources than many. We both have supportive husbands who have held our hands going into surgery and made major life decisions with us. We can afford health insurance plans, however inadequate they may be. Millions of other women do not have this access to care.

To be sure, all women with endometriosis suffer from poor care, regardless of race/ethnicity, or class, but lower income women and women of color face the most pronounced economic barriers to health. Many health plans will not cover pre-existing conditions or deep excision surgery, which is considered gold standard treatment of endometriosis, but only practiced by a handful of surgeons.

We have the opportunity to proactively break this trajectory seen in so many other diseases, like breast cancer, by integrating the concerns of low-income women and women of color from the start.

We can look to other health movements for inspiration. As told in the documentary film How to Survive a Plague, early AIDS activists fought pharmaceutical companies to gain access to life-saving medicines—and won. Their struggle shows how a committed group of people can organize and strategically tell their stories to break down access barriers for all people. We can use our stories so all women have the opportunity to make courageous health decisions, not just those who can afford it. In the process, we can expand the scope beyond traditional reproductive health issues to include “invisible” illnesses like endometriosis.

In a popular culture that often frames women’s bodies as either sex symbols or babymakers, Jolie claims the independent worth of her own body–and inspires us to do the same. As many brave women have learned before us, we can all be heroes of our own stories.

Valarie Kaur, a guest on last Sunday’s “Melissa Harris-Perry,” is an award-winning filmmaker, civil rights advocate, and interfaith leader. She is Senior Fellow at Auburn Seminary, where she founded Groundswell to help mobilize faith communities in social action. Kaur studied religion and law at Stanford University, Harvard Divinity School, and Yale Law School, where she founded the Yale Visual Law Project. You can find her at her blog and on Twitter.

J. Gupta is a health professional at a leading academic health center. As an indicator of the misconceptions surrounding endometriosis, she has opted not to publish this article under her full name.

Sindhura Kodali, a graduate of the Harvard School of Public Health (MPH) and a 4th year medical student at the University of Michigan, contributed to this article.

For more information about endometriosis, visit Endometriosis Foundation of America at www.endofound.org and Endometriosis Research Center at www.endocenter.org. See a portion of Saturday’s discussion about disparities in women’s health below.

Attention to women's diseases should reach beyond Angelina Jolie

Updated