Believe (Black!) Women: The 8-Year Journey to My Diagnosis
I have had debilitating periods for as long as I can remember. When I was 11, I bled for the first time, and I remember the shock and the pain. I’m 24 now, meaning that I’ve had roughly 156 periods, and I’ll have several more. I’ve been hospitalized twice, prescribed several medications, and tried every home remedy in the book. I know that cramping and other pains are part of it, but in my experience, my menstrual cycle is absolutely incapacitating.
I have passed out in public places due to the severity of my cramping. In this situation, I ended up in the hospital because no one knew that this was a normal part of my period. Each time, I have been dismissed with platitudes about womanhood and how strong I am. At the risk of giving too much information, my periods don’t stop at severe cramping. I cramp from my stomach all the way to my thighs, my breasts get tender, I cannot maintain my body temperature (giving me cold sweats), I vomit and have diarrhea, and I am weak for 48 hours. All of this happens simultaneously, usually giving rise to a panic attack. To be frank, although I am very familiar with the feelings, it always feels like something is failing internally or that I am about to die.
Many women in my life encourage me to toughen up, to bear and grin it, but it’s impossible. How do you go to work when it hurts to breathe? How can you stand on your feet, speaking for hours when your thighs are cramping and feel as though you may collapse? How can you trust yourself to be in public when you might have an accident you couldn’t control? Month to month, these are my realities and the struggles I have to try so hard to convince everyone of. This interrupts my routine work and school schedule and leaves me unable to complete simple daily tasks.
Surprisingly, in a women-dominated field, my past gynecologists and adjacent nurses have been flippant about my reports. Last month, I went to the gynecologist for a routine PAP smear exam. After giving the overview of my symptoms, the nurse was the first person to acknowledge that my experience was not normal.
A Black woman was the first to recognize, affirm, and respond to my pain.
She was not the first Black nurse I can recall. I go to Kaiser Permanente for my health care concerns, and regularly encountering white medical professionals is normal. However, this Black nurse was the first person in my gynecological medical history to acknowledge and believe my pain and symptoms. Everyone before has told me that these are all ‘normal’ parts of a menstrual cycle, they are all part of being a woman, and they will all be parts of my life until I have menopause. Eventually, the recurring dismissal wore me down; they got me to believe I was being hypochondriatic and dramatic. So, I stopped complaining. I stopped asking questions. I stopped advocating for myself. Until I met this nurse.
I thought maybe it wasn’t that serious if medical professionals were telling me so and undermining my experiences.
This nurse took it upon herself to review my medical history. In doing so, she discovered that I have had documentation of the same things in my file since 2015. I have routinely reported the same symptoms, and no one before her had endorsed them as abnormal or cause for concern. How is it that someone can complain about something for eight years straight without investigation? How is it that I have it in writing that I have been struggling with this, and no one has done anything about it? How is it that up until I encountered a Black nurse with the right kind of politics to advocate for me and my medical needs, I had been ignored?
I mentioned various possible diseases or conditions that I may have had ranging from PCOS to endometriosis to ovarian cancer. Every time, I received an apathetic response and assumptions about my health. As an otherwise healthy woman, these assumptions resulted in low urgency for testing or scheduling follow-up procedures. They tried to prescribe birth control without valuing what I was saying. They wanted a quick fix to a problem that has been plaguing me my entire reproductive life. The pills did not work. The home remedies didn’t work. Changing my diet didn’t work. Exercise didn’t work. I knew there was something more to this, but I had always been led to believe that I was overreacting.
As I teach a Gender and Women’s Studies class, I have read the works of Harriet Washington and other scholars. Washington’s research on the intersections of gender and racial politics in health left a lasting impression on me. According to Washington,
“A closer look at the troubling numbers reveals that blacks are dying not of exotic, incurable, poorly understood illnesses nor of genetic diseases that target only them, but rather from common ailments that are more often prevented and treated among whites than among blacks … Black women have been undergoing mammograms at the same rate as white women but are more likely to receive poorer-quality screening, which may not detect a cancer in time for a cure. A black woman is also more likely to develop her cancer before age forty, too early for recommended mammograms to catch it, and black women are diagnosed at a more advanced stage than either Hispanic or white breast-cancer patients. Black breast-cancer patients have a worse overall prognosis, and a worse prognosis at each stage.”
These observations terrify me. It led me to believe that not only was I being purposefully ignored, but deliberately silenced. My plights were not intended to be known. The pseudoscientific history of Black women’s inherent strength (namely, being more capable of enduring pain and abuse than other races) has killed countless women before. I am sure that the same phenomenon has kept many Black women unacknowledged, undiagnosed, and untreated.
Washington continues to describe how “the tragedy of illness at present is that it delivers you helplessly into the hands of a profession which you deeply mistrust.” In my personal experience, I now see why there is reason to be skeptical. We are entrusting these people with our lives, and in turn, scientists, doctors, and other medical healthcare professionals “been found to have lied through falsified data or fictitious research agendas, often in the service of research that abused black Americans” (Washington).
It’s very possible that I have been ignored due to fictious (and disproven!) accounts that Black women have higher pain tolerance than other races, that our skin is thicker (literally, in terms of skin density), amongst stereotypes that paint the demographic as scheming, dishonest, and drug-addicted. I am not certain what led so many nurses and doctors before her to disbelieve me. I am afraid that it might be a mixture of several social ills.
My pain is valid because I am feeling it. However, this experience with this Black nurse was the catalyst for my most recent medical diagnosis.
Because this nurse believed me, she ordered the appropriate tests and ultrasounds to examine me fully. As of November 2022, I have officially received an endometriosis diagnosis.
I have this Black nurse to thank for this medical affirmation, but I have several critiques for the system.
Were it not for our private conversation and her sharing that her research was on Black women’s health and being systemically silenced, I do not know if I would have received my diagnosis. We traded horror stories that other scholars had reported on, building a brief connection with one another. My situation was very personal to her; she specifically went out of her way to advocate for me. Because of her, I was able to get the care I needed. Without her, I may have had to wait eight more years.
The intersections of race and gender work simultaneously to keep Black women’s voices unheard. While I don’t believe that race is the only factor contributing to my story, I think it’s central. This nurse identified several instances of racial malpractice within her own division; most of which she witnessed herself. She had numerous stories of Black women of various ages not receiving the care they needed when entrusting white medical healthcare professionals to do their jobs. I am not sure if it is race, gender, or the socioeconomic assumptions and stereotypes that prevent these medical healthcare professionals from utilizing their full capabilities, or if it’s some deadly mixture of all three. These are pervasive stories throughout every generation, trends that have genealogical roots in the American white supremacist state.
Harriet A Washington has been conducting research on this since 2006, but its effects are still felt today. We often speak about prejudice and discrimination through a general, historical lens, but I now have concrete, personal stake in this conversation. All I can hope to do is bring awareness to these issues so that the Black, and other women of color do not have to jump through such hoops to receive the care we pay for.
From Harriet A. Washington. 2006. “Introduction: The American Janus of Medicine and Race.” In Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Harlem Moon. Copyright © 2007 by Harriet A. Washington.
