This is a featured article written by a former Univeristy of Virginia student. Read about the author here.
Abstract: The disproportionate rate at which Black and Brown women are confronted with health disparities is short from surprising. In recent years, there has been an increase in research looking into how social factors, such as race, ethnicity, and gender, impact patients; however, much remains to be examined and even more remains to be acknowledged and dealt with. At the root of this issue lies the fact that doctors are not adequately trained to provide quality care to Black and Brown women. During their core years of medical school, students are taught to focus on “objectivity” and avoid the inclusion of racial and ethnic identifiers. As a result, objectivity eventually becomes synonymous with the white, male body as being a standard in study. These standards cultivate concrete, biased foundations in the minds of future physicians and consequently result in the increased mistreatment of Black and Brown patients.
There is very limited research available surrounding the impact of systemic flaws in medical curricula on female South Asian patients. In the current research available, much of it centers around the concept of “Mrs. Bibi Syndrome,” a stereotypical, derogatory term used by physicians in conversation that characterizes South Asian women as being overly dramatic and untruthful. The effects of this mistreatment are detrimental, traumatizing, and oftentimes permanent. As a result of the biases imparted on physicians through their medical studies, South Asian Brown women are left increasingly more vulnerable than both white men and white women.
To gain a better understanding of the experiences of South Asian women for this paper, this study used methods such as ethnography, personal lived experiences, and interviews with women from the author's local South Asian community to examine the longstanding effects of medical mistreatment and the dismissal of female patients of color. In comparison with current literature, the stories shared in this paper show to be those of a large pattern in the medical field where maltreatment against Brown women is prevalent. The research conducted for and analyzed in this paper is intended to contribute to the limited research base for this subject to call for greater action and more studies to be conducted in the future so that mass medical discrimination comes to an end. Additionally, medical schools should make greater efforts to ensure that their students are instructed with materials that are representative of the diverse range of patients that they will encounter as physicians, starting with eliminating the concept of objectivity in medical school curricula.
Doctors are expected to adequately treat Black and Brown patients, despite the majority of their medical training being based on the white male body. Medical schools teach students to remain objective when serving patients; however, what exactly does it mean to be “objective” and for what purpose does “objectivity” in the medical arena serve? In this sense, objectivity operates as a mere façade, marketing that healthcare workers can remain unbiased in patient care, as medicine is expected to be based primarily in the realm of hard-sciences. Realistically however, quality patient care and medicine need to be based on much more than just the hard-sciences and instead require other social factors such as racial, ethnicity, and gender to be taken into account to effectively treat patients (Tweedy, 2020). Nonetheless, the commitment to remaining objective in medical care is the reason for which medical schools avoid considering racial or ethnic identifiers in their curricula. Medical school curricula center whiteness as the standard or normal, while Black and Brown bodies are viewed as nothing more than afterthoughts and outliers (Anonymous, 2020). In many textbooks, “white skin is the standard indicator” for training and conditions; however, when current medical students identify and treat conditions in predominantly white people, it leaves little room to discuss symptoms that present on bodies of color (Wilson, 2020). This highlights the missing objective of medical schools to educate their students to meet the expectations that as experts in medicine, doctors should be able to recognize symptoms in all patients, regardless of sex or race; consequently, it cannot be assumed that doctors graduate medical school with this ability, thus resulting in the preventable deaths of Black and Brown bodies (Wilson, 2020). Doctors are taught “how to treat and care for white bodies, while Black and Brown bodies continue to be supplemental” (Anonymous, 2020). The truth is that there is nothing objective about the structure of the formal medical education system; instead, it is incomplete, as doctors are unequipped with the tools to comprehensively treat Black and Brown bodies (Anonymous, 2020; Wilson, 2020). In reality, these dangerous aspirations of “objectivity,” seeded in physicians as medical students, work to create gaps in knowledge and unfounded biases (Shaw, 2018; Wilson, 2020). This form of medical education that is designed to be huddled behind false claims of “objectivity” is a white supremacist approach. These predispositions continue to linger throughout the careers of many practicing physicians and healthcare workers, ultimately leading to the maltreatment and endangerment of Black and Brown bodies.
In recent years, there has been an increase in research done to demonstrate the health disparities faced by Black and Brown women alike, but much remains to be studied. For example, more research is needed on the biology and medical needs of South Asian (SA) women and how symptoms present on bodies like theirs, along with how SA patients are faced with greater chances of physician-propelled prejudice (Chao-Fong, 2020). Despite the vast gaps in knowledge among minority populations, the general consensus among researchers is that Black and Brown women face misdiagnoses, delayed diagnoses, withholding of care, and deaths at a disproportionately higher rate than their white counterparts (Suite et al., 2007). Black and Brown women are regularly subjected to being told that their symptoms are in their head, that they are overreacting, or even hysterical. Instead of getting to the root of the problem, their complaints are dangerously dismissed, creating an atmosphere of discomfort and mistrust between patient and provider (Shaw, 2018). Though these actions are directly perpetuated by doctors on a personal level, doctors are not to be blamed entirely. This is a systemic issue, as institutionalized racism makes it impossible for individuals to solve the issue. Instead, the blame should be shifted onto the lack of inclusivity initiatives in conducting the research used to prepare and teach medical students. Women, particularly Black and Brown women, are stereotyped as more “emotional and hypochondriacal” due to the reality that women have “more medically unexplained symptoms than men” (Seegert, 2018). Simply beyond the scope of racial identifiers, women in general are largely excluded from research (Seegert, 2018). Among the scarce research for women, very little is centered around the illnesses and symptoms of people of color (Seegert, 2018). “For decades, the [white] male body was the standard for health and disease research” (Shaw, 2018). Researchers have argued that “women’s varying hormonal states and cycles would complicate their results [and that] it was just easier and cheaper to study men, who were considered a more homogenous group” (Seegert, 2018). Researchers have argued that it was difficult to create control groups and find conclusive results that were not largely impacted by a woman’s varying hormonal cycles (Seegert, 2018). Such findings from published research studies have served and continue to serve as the foundation in creating curricula for medical schools. In some instances, women and men present different symptoms when having the same ailment; however, doctors are less likely to recognize the female versions, as they are more familiar with the male presentation of symptoms due to the fact that males have been studied more extensively (Shaw, 2018). For example, “chest pain is the most commonly reported symptom of a heart attack in men,” while women report more “subtler” and ambiguous symptoms of fatigue, indigestion, and neck or jaw pain that doctors will often misdiagnose as stress or the flu (Shaw, 2018). With a dismissive medical system in place, Black and Brown women are typically viewed as “hysterical” as their ambiguous symptoms can be attributed to psychological conditions, minimizing their claims and concerns. Though the root of the problem lies in the racist and sexist exclusion of women in medical research, the blame is placed on the victims, Black and Brown women.
In my personal experiences, my very recent acid reflux and stomach ulcer diagnoses were delayed by over eight months as a result of a series of negative encounters with one of the first physicians I saw for this matter. Acid reflux is a common disease affecting millions of Americans every year, causing symptoms of heartburn and nausea. Though cases widely vary in severity, my symptoms of nausea have consistently been unbearable and have resulted in chronic discomfort nearly every day for the majority of this year. In keeping up with the rigor of college over the past few years, I suffered from regular sleep deprivation, and as a result, I turned to drinking countless venti-sized iced espressos to supplement my lack of sleep. At first, I was fine; however, as I continued to partake in these habits, my nausea began to worsen. What would previously have been light nausea after eating here or there in the past became a constant feeling of wanting to throw up. As time passed, my nausea permeated into all other aspects of my life, leaving me feeling weak and unmotivated. In the mornings, I would wince in pain trying to get out of bed or be too dizzy from vomiting, unable to attend class. Eventually, I quit drinking coffee and worked on fixing my sleeping schedule to be more plentiful and constant, but my symptoms did not go away and continued to make my life miserable.
This past semester, when my nausea became intolerable, I decided to visit my university’s student health center. At first, I was excited to gain control over my symptoms and get my life back. However, all excitement quickly dissipated during that appointment as soon as the physician started asking me questions. She first asked about my diet; I told her that I meal-prep food for most of the week because I had a busy schedule and that I ate a halal diet. In Islam, following a halal diet consists of only consuming meat that is slaughtered and handled according to specifized religious rules as well as avoiding alcohol and pork. When she heard this word-- “halal,” her tone changed from inquisitive to condescending. After asking me “what does this halal thing mean,” she asked me “why I couldn’t just eat food from the dining hall or around here.” While I did not expect her to be knowledgeable on the core details of a halal diet, her patronizing words established an environment from which I left feeling uncomfortable and humiliated. She spoke to me condescendingly, saying things like, “look, I don’t know what your halal food is” and went on about how it might be contributing to my nausea.
After she inquired about my diet, she asked me about my academic life. I told her that I had recently transferred to this university earlier that academic year and that though my school life was busy, I was excelling academically. Despite that, she suggested that perhaps I couldn’t handle the stress of being a student here and recommended I should go see a psychiatrist instead of scheduling appointments with internalists. Shock and anxiety spread deep within me as I realized that she had not heard me at all this entire appointment. After I vehemently countered that my symptoms were not due to stress, she gave in and wrote me a prescription for my nausea. I was truly dumbfounded by the events that I just experienced, and while my goal for this appointment was to discover a diagnosis and create a treatment plan, a flood of relief washed over me when she wrote me the prescription.
This flood of relief was short-lived and did not last for long. After I filled the prescription, I was called by a pharmacist for a consultation on how to use the medicine. She asked me general questions about my symptoms, and when I told her about my nausea, she looked puzzled with my response and replied back saying, “Well, I normally wouldn’t give this medicine for that.” When I heard those words, my heart sank. My previous feelings of relief were now flooded with embarrassment, vulnerability, and invalidation. I ended up filling the prescription, but I did not take any of the pills and consequently canceled the follow-up appointment.
I tried so hard to forget this experience, but this first encounter in my journey towards receiving a diagnosis turned out to be one that I could not escape. After this experience, I refused to see a physician, no matter how bad my nausea became. I was afraid that my body would be degraded and that my concerns would be delegitimized once more. Her words loomed over me for months following the incident and made me cast doubt upon myself and my symptoms: perhaps it was all in my head, and this was all my fault. After all, she made it clear that she saw things in that way. Therefore, I continued to suffer in silence. It wasn’t until recently that my friends and family pushed me to schedule an appointment with a familiar physician I’ve seen before and reattempt seeking a diagnosis for my symptoms.
Though I am currently on a treatment plan, I spent much of this year feeling miserable because of my nausea and accompanying pains. The suffering that I faced was beyond unbearable, yet I continued to endure it because I was made to believe that my concerns were not medically-valid. Through this experience, as well as multiple other experiences with physicians, I have never felt as humiliated and looked down upon solely because of my ethnicity in my life. Despite the fact that I have now received a diagnosis, I am still overall wary of medical providers, and I am deeply anxious about upcoming appointments for more detailed observation and testing. I can’t help but wonder how different my experiences would have been if I were white instead. People of color are consistently overlooked and made to feel like they are faking illnesses and injuries, over-exaggerating their medical needs, and that their needs are not as important as the needs of others are. Perhaps if I had been white, or fit more closely to the standards of medicine, I would’ve been easier for the physician to diagnose. Based on the way our encounter went, the fact that my racial identity fell outside of her familiar scope hindered her ability to give me a proper diagnosis and consequently made me cautious in seeking healthcare treatment going forward. These experiences have cemented connotations of dread and anxiety associated with going to the doctor in my head. However, these feelings are not mutually exclusive to me alone: growing up in a house with many desi (South Asian) women, I recall many instances of my mom, aunts, and grandmother not being happy with their experiences at the doctor’s office either. In addition to feelings of fear and anxiety, many of them felt like going to the doctors was a waste, as they often came home empty-handed: without results and without resolution. On average, it takes seven years for a patient to receive a proper diagnosis; however, a “misdiagnosis doubles this diagnostic delay,” leaving women of color at greater risk for suffering for even longer periods of time and risks shortening their life spans (Seegert, 2018). Because medical schools claim to teach symptoms “without bias” while leaving race out of the curricula and failing to expose their students to the breadth of symptoms that can be presented differently depending on gender or ethnicity, Black and Brown bodies are left to deal with the shortcomings produced as a result.
Though gaps of knowledge are created through the process and insufficient formal training of becoming a physician, they cannot be left unfilled as all physicians deal with diverse groups of patients. Much beyond the scope of curricula, doctors are expected to fill the gaps in the moment when confronted by a patient of color based on their lived experiences and unconscious biases (Hoffman et al., 2016). For example, studies and research “reveal that a substantial number of white laypeople and medical students and residents hold false beliefs about biological differences between [black and white people] and [the findings of these studies] demonstrate that these beliefs predict racial bias in pain perception and treatment recommendation accuracy” (Hoffman et al., 2016). In a study conducted by Hoffman et al., they conclude that “individuals with at least some medical training hold and may use false beliefs about biological differences between [black and white people] to inform medical judgments, which [has the potential to]... contribute to racial disparities in pain assessment and treatment [if any]” (Hoffman et al., 2016). In terms of Black and Brown women, these gaps are often filled with stereotypes, allowing for a healthcare system built with racism and discrimination to foster a dangerous environment for women of color. As a result of medical discrimination, South Asian women in particular are left “scared, dehumanized, and reluctant to seek healthcare” (Chao-Fong, 2020). Recent reports and published studies centering South Asian women show that there has been an increase in complaints “about being dismissed by doctors who claim they are suffering the so-called “Mrs. Bibi syndrome”” (Chao-Fong, 2020). To be clear, “Mrs. Bibi syndrome” is not in any way medically-backed; instead, it is a derogatory phrase used to downplay the health complaints of South Asian women and label them as unreasonably dramatic (Khan, 2019). The word “Bibi” is used to group South Asian women together as a whole and label them as unintelligent women who cannot properly deduce their own symptoms of pain and illness (Khan, 2018). This term is not usually used in the patient's presence. Instead, the term is used as “casual banter” among physicians; however, nothing is casual about this racist and sexist stereotyping. In matters of serious and valid health complaints or illnesses, there should not be any room for baseless stereotypes or biases to be present. The existence of phrases like “Mrs. Bibi syndrome” does not serve any beneficial purpose and only works to harm the patient-physician relationship. When the clinician’s practice gaze is clouded with skewed perceptions, biases, and stereotypes, this increases the chance of misdiagnoses occurring (Chao-Fong, 2020).This is all encapsulated in a cycle where the blame is shifted between the three parties, the patient, the physician, and the system when the greater weight of fault should be on the latter.
Like many women in the SA community, my aunt is a prime example of someone who went without diagnoses for many years before finally receiving one for her illnesses. From a young age, I remember my aunt frequently complaining about feeling ill. She would make repeated visits to the hospital but would usually come back home after the doctors told her that her symptoms were not the cause of anything serious. Despite not getting the results she wanted to hear, she continued to go back each time she felt sick. Though my aunt and I are not blood-related, she too deals with severe nausea. She had additional health complaints of feeling light-headed and fainting very easily as well. My aunt’s family history is riddled with a plethora of illnesses and diseases like stroke, high blood pressure, and diabetes. To me, it was clear that she wanted to stay vigilant with her health concerns; however, to the physicians and our own family and friends, her symptoms were either exaggerated or all in her head. Whenever my aunt called my mom to explain that she was going to the hospital, she would be in tears about her pain and her fear of what was going to happen. I remember being worried too, but I also remember being told by other family members “it’s nothing,” and that “she’s just faking it for attention.” In addition, my other aunts and cousins would say that she was a “great actor” when she complained about feeling like fainting at family gatherings. Starting out as suspicions, which were likely affirmed by the absence of legitimacy a diagnosis would have given her, these ideas were cemented in the minds of my family members as she continued to come home empty-handed after each visit.
When I spoke with my aunt, she was largely aware of what our family and the local Bengali community thought about her. To her, it was not much of a surprise that the people around her did not believe her, despite the fact that these illnesses were common in our community and family. She explained how many of her friends came to visit whenever she would come home from a hospital visit and would bring food to comfort her, but she knew “that they talked about [her] behind [her] back.” For her, it was embarrassing to come home empty-handed time after time. However, she felt such strong discomfort that she was willing to back until she finally had answers. My aunt’s delegitimization stemmed from doctors, but it eventually bled into her familial relationships as well. When I asked her why she thought this had happened for so long, she replied, “it’s because I wasn’t born here. Also, my English is good, but everyone says I have a strong accent, so everybody automatically knows that I am different.” As I continued to speak with my aunt, it was clear that she felt as if her skin tone and minority background had prevented her from receiving proper care as well as being taken seriously and treated respectfully.
Though my aunt continues to struggle with her unexplained symptoms of nausea, one condition that she did receive a diagnosis for was rosacea. At first sight of my aunt’s rosy complexion, it would not occur to anyone that something was wrong. However, I saw over the years firsthand how my aunt’s rosacea progressively caused her a lot of pain. Her uneven skin tone made her insecure, and she constantly wanted to cover it up with makeup; however, when it flared up, it would be painful to cover. The bumps on her face would be painful to the touch and her skin would peel, creating scars all over her face. She could tell that certain days would be worse than others, but she was not able to pinpoint what exactly was causing these constant rashes. When she first sought medical attention, it was thought that she just had dry skin and acne. The medicines she was prescribed with at the time didn’t help her condition, and she continued to have regular episodes of painful rashes. Over the years, my aunt switched insurances frequently and saw many physicians, hoping to find the right one. Though she wasn’t happy, she continued to search until she found someone who would validate her concerns. Eventually, she did end up finding a physician who believed her, but this was years after she started to look for a diagnosis. Tests were conducted to rule out other conditions with similar symptoms, and she has since taken the necessary steps to avoid episodes. No longer does she have to worry about accidentally touching her face and causing a bleed, but years of damage have already been done.
A Google search for “rosacea” returns dozens of images of white women with opaque-red skin and countless articles about how rosacea is more commonly found to affect white patients. However, the truth is that rosacea is not any more likely to affect white skin than it is to affect skin of color (Alexis et al., 2019). In fact, rosacea is a very common disease that affects millions of people every year (Alexis et al., 2019). Instead, “rosacea has been reported less frequent among individuals of color... [hence why] the susceptibility of persons with highly pigmented skin to dermatologic conditions like rosacea is probably underestimated” (Alexis et al., 2019). This is because rosacea does not present the same way on white skin and skin of color. Alexis et al. claim that there are fewer diagnoses among skin of color for this disease because “of the difficulty of discerning erythema (redness) and telangiectasia (dilated blood vessels or broken capillaries) in dark skin” (Alexis et al., 2019).
Because it is more difficult to detect, it is easier to misdiagnose, increasing disparities in the management of the disease (Alexis et al., 2019). This example is one of the many instances where “learning the white-version” as an objective biological model limits a doctor’s ability to diagnose and to treat (Alexis et al., 2019). My aunt’s difficult experiences in receiving a diagnosis and having comprehensive treatment withheld from her demonstrates how coded whiteness has infiltrated the healthcare system, feeding further into systemic delegitimization.
As a result of delayed diagnoses and misdiagnoses resulting from racism and discrimination, Black and Brown women are afraid to go to the doctors, no matter how critical their health complaints are. My mother is an example of someone who feels so traumatized based on the experiences of hers and her loved ones that she refuses to go to the doctor entirely. It has been years since she has gone in for an annual check-up. She has a large lump on the side of her throat, indicating that her thyroid is inflamed. Finding out what was wrong with my mom’s thyroid itself was an extensive process, one that required numerous procedures and ultimately would have required surgery. My mom was hesitant throughout the entire process, and she eventually stopped attending follow-up appointments entirely when she heard that the surgery she needed would risk complications. My mom’s decision to stop treatment was not based on neglect. Instead, it was based on the fear of having a misdiagnosis take over her life. My mom grew up watching her mother–my grandma–suffer from many inexplicable ailments. She also grew up watching corrupt practices play out in exchanges between physicians and her loved ones, thus creating a sense of distrust between her physicians and herself. During my mom’s younger years, a time when her younger brother was preparing to go to law school, my grandma received a diagnosis paired with a warning that she could die any day as a result of her health complications. My uncle chose to stay by my grandma’s side and wait until after her passing to continue pursuing his dreams. This exchange happened over twenty years ago, and my uncle was not able to attend law school because of the anxiety he developed from the fear of not being by her side if she passed while he was away. Like my mom, my grandmother was afraid of going to the doctors after hearing about the numerous complications and poor-experiences her community and family members have faced. Instead, she relied heavily on namaz and dua, or prayers, to solve her ailments. Her illnesses continued to stay with her, and eventually, my grandma became largely disabled and bedridden. Her later diagnoses, such as gallbladder stones and hyperthyroidism, explained her pain and much of her chronic weakness; however, my grandma’s family lived in constant dread and fear of losing her for years. After witnessing the risks and lack of care her mother experienced in her procedures, a familiar tug of anxiety pulled inside my mother when she was confronted with her own health issues. My mom did not want to live in constant fear of dying, and she did not want my siblings and me to anxiously worry about losing her either. To her, the better option was to stop the treatments and observations and just live as long as Allah, or God in Islam, willed her to.
These unique experiences of my own, as well as those of my family members, are a small part of many injustices faced by Black and Brown women alike at the hands of a Eurocentric medical system. The training given to medical students should be representative of the racially diverse range of patients a physician will encounter. While it is unrealistic to think or expect that every possible case study can be learned and examined during one’s formal training experiences, it is equally unrealistic to expect doctors to be expert providers for a diverse kind of medicine after being trained with a largely singular education centered exclusively on male whiteness. In a world free of institutionalized racism, where doctors were properly educated with accurate and inclusive studies centering the health of Black and Brown women, I can’t help but wonder, how much pain and trauma as a result of biased medical treatment could we have avoided?
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About the Author: Born and raised in Alexandria, VA, Noorjahan Sheikh is a recent college graduate from the University of Virginia majoring in Anthropology with a concentration in Medical Anthropology, Ethics, & Care. In her studies and professional pursuits, she focuses on the realm of Medical Anthropology and uses the frameworks and theories from her academic curricula to connect them to the various narratives that surrounded her, her family, and her local Bangladeshi-Muslim community. She is currently involved with a research group that focuses on exploring the social determinants of health and various disparities faced by vulnerable population groups. Through both her academic career and personal life, Sheikh has gained extensive knowledge regarding advocacy for better medical care for marginalized patient groups and uses this expertise to shed light on issues faced by her local community.