This piece is published in collaboration with Echoing Ida, a Strong Families project.
I have spent the better part of this millennia in and out of hospitals with consistent and unexplainable kidney infections, fevers, and severe joint pain. While I was in college, doctor after doctor shrugged their shoulders and sent me home without a diagnosis and occasionally a day’s worth of pills for pain management. Regardless of who I saw, doctors eyed my frequent emergency room visits with suspicion, and I was referred to a therapist and/or psychiatrist on more than one occasion.
When I was in graduate school in Chicago, I was diagnosed with lupus. While lupus is a notoriously difficult diagnosis, there is quite a bit of evidence that women are generally taken less seriously, and even treated with suspicion, when they show up in the emergency room with pain as a primary symptom.
I never had any problem with pharmacists or doctors during the six years I lived in Chicago, but after I moved to Virginia to finish my dissertation in 2012 I was frequently accused of being a drug seeker, doctors refused to treat me, and pharmacists regularly interrogated me. My not uncommon story—stories of being profiled when attempting to get pain management, are common in my lupus support group—is a kind of discrimination that is not only painful, but life-threatening. As long as stereotypes and racism get in the way of diagnosis and treatment, young women and women of color will continue to receive substandard care.
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Overall, research finds that doctors are more likely to discriminate against Black patients who are seeking pain management. A study by Dr. Mark Pletcher of the University of California, San Francisco, found that “emergency room doctors are prescribing strong narcotics more often to patients who complain of pain, but minorities are less likely to get them than whites.” This is in tandem with a more recent study by Dr. Tiffani J. Johnson that found “Black children were 39 percent less likely to receive pain medications compared to white children with similar medical situations.”
This discrimination is compounded for women, as we are less likely than men to receive adequate pain management for chronic diseases like fibromyalgia. In an article for the New York Times, Laurie Edwards, author of In the Kingdom of the Sick, argues that women are sent to therapists, instead of provided pain management, in large part because they are frequently assumed to be overly emotional and hysterical by emergency room doctors. When the patient is young, Black, and feminine-of-center, her assumed lack of believability is compounded by the intersection of her identities. Many of the doctors I have encountered, after I moved to the South, were more willing to believe that I was a drug addict than a PhD candidate.
It was this kind of discrimination that got in the way of my diagnosis when was in college in Ann Arbor, Michigan, a small, mostly white college town. Without an easily identifiable disease, I was passed around from specialist to specialist. The habits of doctors to send patients out the door if their symptoms don’t appear to be “clinically life threatening” is particularly problematic for women of color.
Women are more likely to have debilitating chronic pain diseases that are not easily diagnosed like fibromyalgia, multiple sclerosis, and chronic fatigue syndrome. “As a whole, autoimmune diseases, which often include debilitating pain, strike women three times more frequently than men,” wrote Edwards in the Times.
A recent study found young Black women are more likely to have chronic autoimmune diseases, like lupus, that slowly erode at essential organs like kidneys, lungs, and even the heart. “We found a striking health disparity between black and white women,” said the study’s author, Emily Somers, in a statement. “The disproportionate burden of disease was compounded by the fact that for black females, peak risk of developing lupus occurred in young adulthood while the risk of disease among white women was spread out more evenly through mid-adulthood and tended to be less severe.”
In 2010, after months of mysterious symptoms and misdiagnoses, a primary care physician in student care at my graduate institution
took pity on me and sat down with every one of my medical records she could dig up. After a number of tests, and a close case study, I finally had a name for my mystery illness. What followed was two years of relative bliss in the world of a Black woman with a chronic illness. I had multiple doctors and specialists that understood my disease, believed me when I said I was in pain, and always acted with care and compassion. Little did I know, that would quickly come to an end.
While I knew intellectually that chronic illness management was challenging for women of color, I never fully grasped what that looked like in practice. In my mind, all of my previous problems were due to a lack of a diagnosis. Once I had a real, well-studied disease, confirmed and agreed upon by respected specialists in the field, I assumed that care would never again be an issue.
After all, a doctor would never deny care to someone in “legitimate” need, right?
When I moved to Virginia,
my disease took a turn for the worse. For a year I found myself unable to find adequate care and pain management. In my new town, I was routinely accused of being a drug seeker, refused handicap access to campus, and even had a primary care doctor call the hospital where I was admitted and demand that they not provide pain management. This was after numerous calls to my Southern doctors by the specialists who’d seen me in Chicago. The experience was painful, and continues to be a painful one, and unfortunately it is an experience that has a long history in the United States. Whether we are thinking about the blatant illegal medical testing on Southern Black men during the Tuskegee Project or the tragic case of Henrietta Lacks, Black Americans have had a painful relationship with the medical industry in the United States.
Once again, I found myself a victim of the type of discriminatory practices that in my experience seem to be prevalent throughout the medical industrial complex (based in large part from personal accounts told to me in a number of chronic illness support groups that I have attended). Even after multiple specialists verified over and over again that I was legitimately ill, there was no convincing doctors in a Southern political climate that has vilified pain management and people of color. To them, I could never be anything other than a woman with a severe addiction.
It all came to a head when, after entering the emergency room and asking to be admitted, I was held in an ER room for six hours, while doctor after doctor came in and attempted to convince me that I did not have lupus and that I did not need to be in the hospital. It was only at hour seven, after I was hysterically crying, yelling at doctors, and having my hand held by an empathetic nurse, that a new doctor came on to the rotation, took one look at me, and admitted me without further dispute.
While I will forever be grateful for his individual empathy and compassion, women of color should not have to continuously depend on the kindness of one or two individuals to get adequate care within these health complexes. Doctors should be trained on chronic pain, autoimmune, and other lifelong diseases that chronically plague the lives of women across the intersections. I, and women like me, should be able to walk into a hospital anywhere in the country and be confident that not only will we receive adequate care, but that doctors will continue to search until they get to the root of the problem. Women of color should not have to prove the legitimacy of their illnesses in order to get treatment. Perhaps this can only happen with the dismantling of racism, but for the sake of my sisters in chronic pain, I hope it doesn’t take that long.