Black women have historically been experimented on and their medical pain often ignored. Where does this disregard for Black women’s medical pain come from, and what work is being done to circumvent this care?
The Root of Questionable Care For Black Women
James Marion Sims was a man often credited with being the modern father of gynecology, creating pioneering tools (the vaginal speculum for instance) and surgical techniques. In 1880, he was named President of the American Gynecological Society, which he also helped to found. According to History.com, there are several statues of him across the country. The foundation for this scientific research however, is experiments performed on Black women starting in 1844 in Alabama by Sims. The patients who were subjected to these experiments were deprived of anesthesia despite it being available at that time.
“While some doctors didn’t trust anesthesia, Sims’ decision to not use it—or any other numbing technique—was based on his misguided belief that Black people didn’t experience pain like white people did. It’s a notion that persists today,” states History.com.
How This Care Persists
The negligence present there is reflected in the case of Amy Mason-Cooley, an Alabama resident who told Today about a hospital visit that was caused due to her being afflicted with sickle cell disease. After 24 hours, she was still in pain, but was taken off of her medication by her doctor. Her blood count began dropping, to the point that it may have required a blood transfusion. Cooley’s requests were repeatedly ignored and it was not until other medical staff came in and intervened that she was properly medicated. According to Kira Buckley, co-founder of HeyyHealer, a holistic health and wellness studio, this is why Black women are uncomfortable being willing to receive the medical care they need.
“We begin to shut down, we begin to question ourselves, we begin to wonder – if I don’t trust myself, then it becomes very hard for me to also trust another woman, right, let alone a black woman. There’s a lot of comparison that happens in that as well. And all of this is rooted deeply in fear,” Buckley.
Buckley herself was diagnosed with PCOS (polycystic ovary syndrome, a common hormonal disorder that can cause irregular periods and enlarged ovaries) when she was 12, a diagnosis that she became comfortable with in her 20’s. She also holds 10 to 12 years working in the medical field.
“From personal experience, what I have seen in the medical field, from a Western medicine lens, in a lot of the examples that you just named, makes things very inconvenient, and uncomfortable,“ Buckley said.
Cooley stated that for Black women experiencing medical pain, you may be framed as exaggerating your symptoms or may be told they are not existent if you don’t have extreme reactions.
“There’s so much judgment. If you’re too calm, then they say, ‘Oh, you’re not sick. You don’t look sick.’ And then if you’re crying and moaning, they say you’re exaggerating. I don’t really know what they want from us,” she said.
This judgment can have dire consequences for Black patients. Black women are three times more likely to die after giving birth. According to a study done by the American Journal of Obstetrics and Gynecology, 40% of Black women who were diagnosed with endometriosis (a chronic condition where the tissue (endometrium) grows outside of the uterus) were initially told they had PID (pelvic inflammatory disease), (which is often the result of complications related to an STD). Keisha Ray, an associate professor at the McGovern Center for Humanities and Ethics in Houston stated that this type of misdiagnosis is rooted in a stereotype attached to Black women.
“When we look at patient testimonies, particularly from Black women, we’re seeing that these typical tropes of Black women are used- that they are hypersexualized and that if they have some sort of illness or pain, that it’s likely self-inflicted in a sense that they did something wrong,” Ray said.
Medical Distress and Alternative Care
This medical distress has led Black women to alternative forms of care, at times opting for holistic treatment. According to Buckley, this has been able to offer a collective healing, something she saw take place in light of the pandemic.
“I’ve seen, like literally, the movement coming in droves of black indigenous people of color, but also specifically black women, sourcing their own healing in a way that’s never been done before. So the presence of doulas and herbalists and nutritionists and body workers that have come like literally resurfaced and come up to the surface to say, “Hey, I got you and I’m holding space for you meditative and breathwork practitioners as well,” Buckley said.
Buckley states that hospitals have an approach that can be unnerving, which may not be as accommodating to visitors.
“From personal experience, what I have seen in the medical field, do from a Western medicine lens make things very inconvenient, and uncomfortable. And almost to a point (in my experience) they go out of their way with certain bedside manner. We’re just talking about point of reference as soon as you walk in the door, right? How am I greeted? What is the bedside manner? Is there consideration taken for just who I am as a person. However I identify, there’s not as much inclusion in the intake process as well,” Buckley said.
Buckley states there can also be more urgency in the care a practitioner may approach with.
“So in terms of inconvenience, and just the feeling of that they (doctors) just don’t care. And I’m a number, I’m an application, right, or I’m just an intake, I’m someone else in the rotation. There’s seven clinic rooms back there, and there’s one practitioner, and they’re making their rounds. So I’m going to spend 10 minutes in here, 10 minutes in here, 10 minutes in here, and I keep going,” Buckley said.
What Can Be Done To Improve Care For Black Women
As for what the western medical field can be do to help women who face discrimination when addressing their medical pain, it will take more than a change of appearance and a shift in culture statement.
“Can you include me in asking me, what do I need when I walk into your space, as opposed to assuming, and putting guards up because at the core, you might actually be afraid of me. And the fear may be coming from a lack of consistency in real heartfelt exchanges. Or just, culture, the assumptions, the stereotypes, right? So just getting to the core of that, I believe that shifting the approach, and first, how do you see us? Do you honor us, and can you hear us, and all of these things will I believe collectively move us in a direction where now as the black woman coming in to receive service and medical attention,” Buckley said.
Black obstetricians are taking steps to improve the system through both the form of care and the questioning. In an NPR article released in 2021, there is a community called Black Doctors of South Florida, which is a US service provider company. Medical students at Florida Atlantic University are also being instructed to question people on their medical history and experiences, and students are also taught about racism in their first year of medical school.
Dr. Michelle Wilson, who graduated from the Schmidt College of Medicine, stated in 2021 that she wants to cultivate a practice specifically catered to Black families.
“We (Black people) code switch. Being able to be that comfortable with your patient, I think it’s important when building a long-term relationship with them. Being able to relax and talk to my patient as if they are family — I think being able to do that really builds on the relationship, especially makes a patient want to come back another time and be like, ‘I really like that doctor,’ ” Wilson said to NPR.
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