Chronic Pain, and the Denial of Care for Black Women


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.

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.

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  • L-dan

    That is horrifying. It’s mind-boggling that a doctor would look at records in an ER environment and try to reverse a previous diagnosis based on almost nothing. That absolutely shouldn’t be a thing that happens. Do they even try to teach doctors to pay attention to their biases, not to mention the systemic ones?

    • ansuz

      IANA doctor, but I have a decent amount of knowledge about medical school and doctor-training, and no. Critical thinking, biases, and even how evidence works are not things that your average doctor-in-training will learn unless they go looking for that information.
      My impression is that medical school is currently much more like vocational training or, I don’t know, studying engineering than it is training in how to think.

      • L-dan

        My stint as a simulated patient for 1st year med students left me thinking that they did or would hit some of that. But that program may not have been typical at all.

        Our scripts often included a number of factors that seemed designed to help teach doctors about some of this (mostly factors in patients’ lives that made it more difficult to get full disclosure for their history, barriers to being able to follow through with treatment, etc.), though I don’t think we ended up with a lot of PoC in the pool to really push at that angle.

        Plus you’re looking at 1st year students who are angling for a good grade so they *really* have a personal incentive toward figuring out what’s going on with the patient. As opposed to actual practice where there seem to now be a number of pressures that aim to see patients moved through the system as quickly as possible.

        • VonRecklingHause

          “a number of pressures that aim to see patients moved through the system as quickly as possible.”

          Thank you Obamacare.

          • L-dan

            *eyeroll* While I’m sure it will have an effect as we insure a lot more people without a similar increase in doctors (which is a whole other set of issues), it’s hardly been around long enough to be a factor. Measured against the historical pressures, it’s barely a blip.

            The insurance companies have done a fine job of trending that way already. Obamacare, by piggybacking on the existing insurance industry, certainly doesn’t pull back on those pressures, but if it’s also nowhere near the primary cause.

          • http://amoffettb.com/ Alexandra Moffett-Bateau

            I agree, just speaking from my personal experience. This issues that I’ve been dealing with go back as far as 2001. From my perspective, the issue has everything to do with hospitals having high incentives to prioritize the treatment of certain diseases (that tend to be more expensive to treat) over more ambigious/under studied ones like lupus, chronic fatigue, fibromyalgia, endometriosis and so one.

          • feloniousgrammar

            Doctors and Psychiatrists frequently mislabel medical conditions as “mental illness”. While suffering knew that the fatigue and pain of my yet to be diagnosis was physical and so did not tell any medical personnel about what would likely have been interpreted as “depression”. I learned not to see psychiatrists in order to protect my mental health. I also refuse to fill out those surveys that are looking for depression and recommend that all women do this, especially when you suspect or know that you’re suffering a physical malady that has nothing to do with your mind/brain.

            Now, psychiatrists can diagnose someone who has an actual medical condition with “somatic symptom disorder” and you know that women and minorities (especially black women) are more likely to thrown into that category of medical neglect than white men. Psychiatrists can override a specialist’s medical diagnosis.

            It’s crazy how psychiatrists have to graduate medical school to train in psychiatry, so that they can ignore medical conditions with what may appear to be psychological symptoms. Seems that they would be expert at weeding those out, yet most of them don’t even bother to test for iron deficiencies, B-12 deficiencies, or thyroid dysfunction. And doctors are way too quick to refer women, and especially black women and women of color to psychiatrists.

            Their hatred of women and minorities is often palpable, and being denied pain medication over a racist assumption is inexcusable. The medical/pharmaceutical complex has no problem giving oxycontin to white people.

            You should have been sent to a pain specialist who could explain all your options for medication and other treatments such as physical therapy, and supplements. I wish much better care for you in the future— you need it, you deserve it, they owe it.

          • Mirable

            It’s much better just to let the people who cannot afford health care die. That way, those with insurance can always be first in line!

          • cjvg

            From the start of the article;”I have spent the better part of this millennia”
            Obamacare has not been available for a better part of a millennia, like the experiences that she is talking about!

            In all likelihood 99,9% of these experience happened before obamacare even existed since it only been available this year!

            Nice try, but ultimately another dishonest statement that contributed nothing of value!

          • Renee Goodwin

            Yup, I have seen quite a few people, probably cons/teabags, bitching about Obamacare before any of it had even gone into effect

        • Melinda Hampton

          Gonorrhea!!

          http://www . youtube . com/watch?v=YA2HKoAnM7I

      • http://amoffettb.com/ Alexandra Moffett-Bateau

        Ansuz, that is a really interesting point. Bedside manner, critical thinking, and continuing to educate oneself about new diseases and methods of diagnosis, seem like critical habits and behaviors for doctors.

      • Mirable

        Did you know that mental health problems incurred during pregnancy can be solved by simply talking to a mental health professional? And that you can go off your meds and find replacement meds with ease!

        http://blog.secularprolife.org/2014/03/now-that-im-safe-im-pro-choice.html#comment-1271523911

        The ignorance on this thread is…astounding.

        • L-dan

          Just spotted this post. It’s more of the same “we know medicine better than doctors, and we now what’s good for you far better than you do,” shit they keep spouting.

          Same shit that fuels anti-vaxxers.

          When you ascribe to the version of a religion that says free will is of the devil and your deity is involved in every tiny thing you do, that every little coincidence is for a reason, it’s not that hard to fall into the ‘daddy knows better than you’ mindset. At that point, everyone you determine that anyone with ideas counter to yours, which have been deemed proper by your understanding of deity, must be out of touch with the awesome greater plan for them. You, as someone who is obviously much more in touch with that plan, are totally justified in setting them right.

          bllllleeeech.

          • King Rat

            Except they claim to be ‘secular’. However, their PL cause is their religion.

          • Renee Goodwin

            Yup, the whole “you only think abortion and birth control are not immoral is because you don’t have jezus/doG in your life” mentality makes me want to puke, actually the whole religious right/forced birther thing over the last few years has pretty much destroyed any residual feelings of “Christianity” in my beliefs

        • Renee Goodwin

          I saw some of that this week on the stories about the pregnant woman that was apparently trying to commit suicide and take her two children with her, nasty remarks, but I would bet that her skin color had quite a bit to do with the nastiness of the comments.

    • http://amoffettb.com/ Alexandra Moffett-Bateau

      L-Dan, thanks so much for reading. I think your question is an interesting one, I’m not completely sure what kind of training doctors get in terms of bedside manner, or emotional competency. One thing I have personally experienced quite a bit, is the lack of knowledge around chronic, and less easily diagnosed diseases, particularly rheumatological ones. So I think the bad behavior is a terrible combination of race/gender biases, as well as a lack of knowledge of complicated diseases and an unwillingness to admit that they have no idea what is going on.

  • Renee Goodwin

    Doctors are absolutely paranoid about prescribing pain-killers, and btw CVS has already announced that it will be monitoring which doctors prescribe what, and narking on them to the feds if CVS doesn’t like the patterns.

    An ear infection is very often more painful for an adult then for a young child, yet I had a doctor, the one that had just diagnosed the ear infection, get all huffy when I asked if I could have something for pain

  • SphinxEmmaShade

    This is so terrifying. I am a young woman with chronic illnesses and chronic pain myself, and know from over a decade of personal experience how fraught the process of accessing care (and not just for pain management, either) tends to be (including many of the experiences you describe), but I am white. Imagining the process being any harder or more humiliating has literally brought tears to my eyes. While this is not the first time I have read the evidence of racial discrimination in healthcare, specifically in pain management, this account is so affecting and enraging. It is unacceptable that black women are facing even higher obstacles and worse discrimination in the management of chronic illnesses and pain than white women. We obviously need larger societal progress in confronting racist and sexist narratives and biases (both systemic and individual) as well as specific progress in healthcare around respect for patients’ agency, rights, and human dignity.

    Alex, I think your point in response to L-dan about doctors’ unwillingness to admit their ignorance or lack of a solution is really key to the general problems patients face in accessing care, as often the solution for doctors seems to be that “If I can’t find the cure/treatment, you must be inaccurately reporting symptoms/experiencing a mental health problem/a drug addict/[some other “solution” that involves it being the patient’s problem].” However, the complications of racism (and sexism- or in the case of black women, misogynoir) in healthcare need to continue to be confronted by both statistics and personal experience. Thank you for being willing to write about your own experience of being denied responsible care- I know it would have been very difficult for me to relive my similar experiences in such a detailed and public manner, if the same is true for you I applaud your courage.