Shredding the Veil of Silence: Black Maternal Health and the Significance of Speaking Up
By: Alisha Liggett, MD
Last month, director of the Centers for Disease Control and Prevention (CDC) Rochelle Walensky publicly declared racism a serious public health threat. With that, she challenged every CDC agency to come up with measurable solutions to dismantle racism in health care. Though she is correct in asserting what we as BIPOC have known all along, our fear of vulnerability, coupled with intentional secrecy, has created a veil of silence that allows systemic racism in our healthcare system to go unchecked.
After my experience with severe pre-eclampsia and a traumatic birth experience with my first born, I felt such a strong sense of shame. How could this have happened to me? I felt robbed of my autonomy, like my experience had been hijacked by a series of nameless and faceless resident doctors scuttling in and out of the hospital room. I felt like I was reduced to the numbers on a computer screen, and the tracing on the heart rate monitor. As this transpired, I felt like my humanity was floating above my body, totally unattended to. Despite all that was happening around me, I was still concerned about not appearing to be that “angry black woman” in the room. So I did what any Black woman suffering from the “strong black woman syndrome” would do. I did and said nothing.
When I returned to work after my maternity leave, I unintentionally began my healing journey. I am not sure if I simply had not noticed it before, but it seemed that the vast majority of my Black women patients had a story to tell about their reproductive life. They told stories of birth trauma, and triumph, of pride and prejudice. They told me stories of a health care system that rejected them, and didn’t recognize them in their full humanity. Many of these women had never shared their stories with anyone. Through this experience, I learned to value the power of storytelling. Even though I was the doctor, my patients were instrumental in my healing. And so, I began to tell my story. I quickly realized that there is an epidemic of silence among Black women who have been wronged by our system, and I was one of them.
My story begins with the women in my family. The culture of health in my family has always been predicated on secrecy and shame. As a child, I vividly remember how the adults sat around the table while suspiciously whispering about other family members’ experiences. There was the aunt who was forcibly sterilized after birthing her child as a teen mom, and the stories of mistrust of doctors after that cousin was given medicine that made her more sick. Then there were the stories that no one dared to speak of because of the culture of “don’t ask don’t tell” embedded into a generation of women growing up in the Jim Crow south with access to few health care resources, and bearing the trauma associated with living in a society that invalidates you at every turn. Even now as a family doctor, and my family’s doctor, I still don’t understand the full extent of their birth experiences. And as a result, I felt completely clueless going into my own experience. I had no idea what to expect, or how to advocate for myself effectively.
Racism has conditioned us into silence. Our silence allows differential treatment, discrimination, misunderstanding, and inaction in the face of need to go unchecked. These factors not only make for a poor health care experience at the individual level, but they contribute to ongoing health disparities in the entire population. The enduring legacy of structural racism in health care teaches us doctors to assess patients in the archaic, racialized, patriarchal model in which we have been taught. Racism teaches us to dismiss the experiences of Black patients, and to conflate stereotypes about an entire population with the individual experience in one's body. The face of racism in healthcare today can be any face, including a black one. We too can carry the torch of White supremacy and anti-blackness in our daily interactions with Black patients.
Racism is literally making us sick. We often think of our genes, lifestyle, and environment as the strongest determinants of our health outcomes. They certainly contribute! Yet more research is emerging about how the chronic stress attributed to racism is a heritable condition that negatively affects the long term health of Black Americans. It’s called weathering, and it describes the biochemical fragility of our DNA that results from the daily lived experience of racism.
Structural discrimination, targeted bigotry, and internalized racial trauma buried deep in our spirits is causing our DNA double helix to quite literally unravel at the seams. This aberrant DNA is then quietly passed down to future generations, and have compounded into a three hundred year old genetic debt. Weathering has been linked to many common health disparities among Black women that we see today.
Black women are more likely to be diagnosed with more aggressive forms of breast cancer, and die from it at earlier ages. Endometriosis, a condition that can cause debilitating pain and infertility, is more commonly misdiagnosed in Black women. An American Journal of Obstetrics and Gynecology (ACOG) study reported that 40% of Black women were misdiagnosed with pelvic inflammatory disease (PID). Key findings of another study linked racialized false beliefs to incorrect assessment of and inadequate treatment for endometriosis related pain. Although Black and White women have similar rates of uterine cancer, Black women are 90% more likely to die from it and are often diagnosed at later stages of the disease. Black women are also more likely than other women to undergo a hysterectomy for medical conditions where less invasive treatment options are available. HIV incidence and prevalence is highest among Black women compared to all other women, primarily because they reside in communities where prevalence is high.
We experience rampant health disparities in all aspects of our reproductive life. Even when we control for the various factors that influence poor health like access to quality care, insurance status, or even pre-existing conditions, disparities persist. Clearly, there is a missing piece to this puzzle -- the lived experience of structural and interpersonal racism that Black women face. It has been nearly twenty years since the Institute of Medicine’s landmark interrogation of racism within the U.S. healthcare system. The major findings of the report entitled Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare demonstrate that ethnic and racial minorities are less likely to receive preventative medical care, often receive lower quality care, and have poorer health outcomes than their White counterparts. The study concluded that racism is the primary motivating factor behind health disparity in the U.S.
Racism is somewhat elusive in healthcare, but nonetheless palpable to women who experience health care mediated discrimination and violence. But it is time to SPEAK UP! Strategies for dismantling racism within our healthcare system must be informed by the women themselves who experience injustice. Black women must tell their stories both privately and publicly. Sharing our experiences has the power to shed light on the archaic, cobwebbed corners of our healthcare system responsible for the perpetuation of racism. It helps other women along their personal journeys by raising awareness around common themes of mistreatment. It creates a sisterhood that strives toward a common goal. It allows us to dissect the origins of our mistrust of doctors, and avoid possible self sabotage when we choose to avoid them. Reclaiming our stories with confidence has the potential to educate, inform, and empower. It is time to free ourselves of the shame trapped within our Pandora’s box.
Physician and epidemiologist Dr. Camara Jones, an early scholar of racism in health, is noted to have said, “racism saps the strength of a whole society.” This is particularly true because health care is crucial to a strong economy, maintaining a healthy population. Racism, on the other hand, rob us of the ability to live to our full potential. As we maintain heightened awareness of racism in all our societal systems, it is important to remember that this is not just about bigotry. It is also where we live, our job(s), how close we live to a park or grocery store, access to clean water, and the safety of our neighborhoods. It’s about systematically assigning lesser value to Black life. It’s about complicit silence. But we can all be part of the solution by allowing our stories to bubble to the surface, and using them as fuel for activism toward reproductive justice.
Alisha Liggett, MD, is a Family Medicine Doctor, and founder of Empower Her Health, a health education and justice practice that empowers women of color to navigate their reproductive journeys with agency, promoting healthy pregnancies, and healthy infants. Her work focuses on Black maternal health disparities, reproductive health education, and patient empowerment. Follow her on IG @happyhealthydoctoralisha, and LinkedIn and sign up for her monthly newsletter on her website: www.empowerherhealth.com!