Every time Jaime Sanders visits an emergency clinic, she makes sure to bring the three-ring binder that lists her comprehensive medical care plan, including lists of medications, allergies, and records of previous doctor visits.
Sanders knows she’s never guaranteed to find doctors who will take her migraine pain seriously, and carries the folder as evidence of her diagnosis. Even so, Sanders remembers how a doctor she saw regularly groaned and said, “Oh, it’s the folder” when she saw Sanders. The doctor then asked if Sanders would do anything about her migraines.
“These situations keep me from seeking the treatment I need,” said Sanders. “It’s traumatizing, and who keeps wanting to get retraumatized? Sometimes I want to turn around and just go home. It seems like it offends some of the people I know so much about my illness.”
According to a 2018 study by the Centers for Disease Control and Prevention, an estimated 50 million Americans experience chronic pain every day or nearly every day, and 19.6 million experience severe chronic pain. The study found that women, older adults, adults living in poverty, and adults with no health insurance were more likely to experience chronic pain, but that race was not directly linked to chronic pain prevalence.
However, it is possible that black women’s pain is underdiagnosed. A New York University study examining bias in pain management found that white healthcare professionals were less likely than white patients to experience pain in the face of black patients, which contributed to different treatment decisions.
In an editorial by the Association of American Medical Colleges, Dr. Janice Sabin highlighted the research in which a significant percentage of white medical students believed black patients had thicker skin or less sensitive nerve endings, which made them less likely to experience pain. Another study she cited found that white pediatricians are less likely to prescribe pain medication to a black teen after surgery than to a white teen.
Even a CDC paper providing guidelines on prescribing opioids for chronic pain found that members of racial and ethnic minorities could be at risk for inadequate pain management.
The black Sanders has been blogging for The Migraine Diva since 2011 about her chronic pain due to migraines, fibromyalgia, depression and anxiety. She has a family history of migraine headaches and was diagnosed when she was eight years old. As a child, she received compassionate care, but as an adult, she faced microaggressions in health care settings, from mocking her health binder to refusing a doctor-prescribed treatment by another doctor who told her she was unsafe – although exams are otherwise showed. Sanders recalled the latter doctor telling her he could treat his own migraine headaches and 90% of his patients could manage their headaches through lifestyle changes.
“It’s like he blamed me for my pain,” said Sanders. “I worry about so many shifts in my health care – how I speak, how I dress when I get to the doctor’s office – it’s exhausting and mentally taxing.”
Tiffani Stokley suffered from joint pain and headaches for 10 years before being diagnosed with lupus in 2006. The route to her diagnosis was not straightforward – she said the doctors didn’t dig deeper into the problems that were causing her pain until a blood test finally revealed evidence that led to the diagnosis of lupus. Black women are three times more likely than white women to develop lupus, a chronic autoimmune disease that can damage any part of the body, and up to 1 in 250 black women is diagnosed with lupus.
Applying the biopsychosocial disease model developed by George Engel in the 1970s could help improve outcomes for black women with chronic pain. This model encourages clinicians to examine a continuum of biological, psychological, and social factors that could affect a patient’s health, rather than just focusing on the pain. For example, a person’s mental health or work environment could make physical pain worse, and according to this model, a healthcare professional would examine every factor in a particular woman’s life in order to address and manage the pain.
Earlier this year, Stokley saw another discharge of her pain. She went to the emergency room after experiencing complications from kidney stone removal, and while recovering, a nurse in the emergency room questioned her need for pain medication. Eventually, a treating doctor noticed the pain in Stokley’s face and got her the medication she needed.
“In some cases, I feel discharged because I am a woman, and a black woman in particular, or it may just be a lack of compassion that a doctor or nurse in general has,” Stokley said. “They sometimes don’t know how to get them to take you seriously. I’ve seen people get really dramatic and not be heard, but even if you speak to the doctor in a reasonable way, it doesn’t guarantee they will do it.” Also watch out. ”
A purpose for the pain
Stokley’s observation reflects Sanders’ point of view about the fine line black women walk when trying to ease their pain. When Sanders started blogging, she hoped to create a support system and share with others about her life as a wife and mother of three, running a household, while dealing with chronic pain. She was later invited to speak on health panels and introduced her to her current role as patient advocate.
“It gave my pain a purpose and it gave me empowerment,” said Sanders. “It allowed me to deal with my pain and see that it doesn’t define me.”