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The bottle of vodka sat unopened. It was the largest one Cheryl McJoy could find. If she drank it, she thought, maybe the stabbing sensations in her body would stop.
“I just didn’t want to hurt anymore,” she said. Sometimes the pain feels like it is crawling across her body. Other times, it’s a slow burn. The pain in her neck radiates down her arm. Often, her only choice is to lay down until it passes.
She never drank the vodka. McJoy’s intention wasn’t to end her life, but she was struggling to find relief when doctors wouldn’t listen to her complaints. The bottle was a wake-up call that she needed more help to deal with her chronic pain, a result of a traumatic brain injury to the back of her head while on active duty in the military, a handful of knee surgeries and a lingering injury in her left elbow, which she broke 10 years ago.
On the doctor’s office scale of 1-10, she has told them her pain was 35,000. She has described the sensation as an elephant sitting on her chest, then told doctors that a baby elephant must’ve been sitting on top of that one, too. Colossal pain, exacerbated by the brain fog that takes hold when her pain reaches a certain point. And amplified once more when the doctors dismiss her.
“Everything in me was leaving,” she said, “including my will to be here.”
A persistent pattern of dismissal
Physicians have shown a pattern of distrust when Black patients seek help with pain, especially Black women. Black patients are significantly less likely to receive adequate pain treatment across a wide range of diagnoses compared to other patients. In the emergency room, Black patients with bone fractures are less likely to receive pain medication. And among children with appendicitis, Black kids are significantly less likely to be administered painkillers, including opioids.
Acknowledgement of pain — such as migraines, abdominal pain and backaches — requires physicians to rely on their judgment more heavily than when there are visible scars and tangible test results. That causes racial disparities to rise.
Pain is a combination of physical sensation, deeply felt emotion, and a traumatic memory, explained Dr. Haider Warraich, an assistant professor at Harvard Medical School. It’s a universal warning that something’s wrong, beginning with nerve endings feeling a sensation, then relaying information to the central nervous system and, eventually, to the brain for further processing.
“It might well be the most complex phenomenon that we ever experience,” Warraich said. “Because of its subjective nature, pain is very, very sensitive to some of our deepest prejudices as clinicians. It requires clinicians to be much more open, much more trusting of their patients.”
On the pain scale, Linda Shaw’s surpassed the max. The number 10 faltered — 20 felt more accurate. But when she told the doctors and nurses, they’d smirk, she said, then disregard her words.
“It is very dehumanizing,” Shaw said, before pausing and letting out a heavy sigh. “It makes you feel invisible. It makes you feel less than, and to be quite honest, after a while, you get mad.”
A spinal operation kept her from becoming paralyzed after decades of pain and sifting through a number of doctors. Today, at 66 years old, the pain continues, and she has dedicated her life to helping others cope with chronic pain. She calls herself a “pain warrior.”
“Telling [pain’s] story is reserved only for those who have experienced its wrath. It is a burden that is carried in mind, spirit and flesh,” she writes in her book. “It will take you to the darkest areas of your soul and your mind.”
When 62-year-old Denise La Rose meets doctors who refuse to treat her pain, she cuts them loose, praying she is able to find another. It’s hard to trust the physicians she sees where she lives in San Antonio, Texas, after years of racist microaggressions and refusals to treat her.
When La Rose met Shaw, she was contemplating taking her own life.
“I had already planned out how I was going to go to sleep and never wake up because of the pain,” La Rose said behind tears. At the time, she said, no one understood how it felt to live with chronic pain. Friendships slipped away when she became disabled.
She has since found community as a part of the U.S. Pain Foundation.
“When we talk about racial disparities in pain and pain management, what we’re really talking about are those disparities in how some people’s pain is treated more compassionately, with more care, with more intervention that will remedy the pain,” said Keisha Ray, an assistant professor in the McGovern Center for Humanities and Ethic at The University of Texas Health Science Center at Houston.
“I’m a Black woman. I’m supposed to be strong.”
The disparities intensify for Black women as racial discrimination melds with gender bias. Higher wealth, social class, and education are not protective factors for these women. The racial bias persists.
Black women are less likely than white women to be diagnosed with endometriosis when they were experiencing pelvic pain. And according to a report published this year, more than 70% of Black women ages 18 to 49 said they’ve experienced at least one negative interaction with care providers, including dismissal of their pain.
Pain, especially chronic, is much more common among women, making them more likely to be in agony and seek treatment within the health care system, where their experience is underappreciated, said Warraich.
The “strong Black woman” trope, which characterizes Black women as naturally resilient, self-sacrificing, and independent, encourages physicians to view Black women as more willing to push through distress. And it makes Black women themselves feel as though they aren’t allowed to hurt and like they need to suffer in silence.
“I’m a Black woman. I’m supposed to be strong,” said McJoy, who sees a pain counselor for the trauma chronic pain has caused. She has grown tired of people telling her more faith in God will fix it. “Sometimes you just want someone to give you a hug,” she said.
Most people she talks to who aren’t constantly in pain don’t understand how much her body is hurting. They might be talking about cutting a finger, she said. “We’re talking about pain that makes you want to end your life. It’s not the same.”
The concept of the “strong Black woman” is a false narrative perpetuated by racist stereotypes originating in the antebellum South, where violence against enslaved people was justified by false claims about their increased pain tolerance and thick skin.
Such narratives have profound consequences, including the nonconsensual medical experimentation on Black people through history. In the 1800s, Marion Sims — once known as the “father of modern gynecology” — experimented on Black enslaved women without anesthesia, and during the Tuskegee experiment, Black men were intentionally denied treatment for syphilis beginning in the 1930s. Nearly two decades later, Henrietta Lacks’ cells were used for research without her knowledge.
“Pain for Black people, particularly Black women, is seen as something we’ve been built for and that it’s something we can endure because we have the physiology and the biology to endure it,” Ray said. “Health care is built on racial biases and anti-Black biases.”
It has seeped into contemporary health care delivery, even among doctors from younger generations.
Among first and second year medical students, 40% believe Black people’s skin was thicker than white people’s, according to a 2016 study on false beliefs regarding biological differences between races. And students who believed Black patients were less sensitive to pain were less likely to treat pain appropriately.
“Clinicians don’t trust Black people to narrate their pain,” Ray said. “Clinicians don’t trust Black women to narrate their pain.”
The search for healing
Doctors told 39-year-old LaQuinda McCoy it would take four to five months to see a specialist for the migraines she suffered. The migraines came every day, and the rescue medications that were supposed to ease them weren’t working. She told the doctor she couldn’t wait five months, but they didn’t budge. Finally, she confessed that if she didn’t get help soon, she was planning to jump from a building. That is when she was transferred to the specialist.
Now, she has about 18 days of head pain a month, the exact number fluctuating with treatment. She had to leave her job as a liver transplant nurse in 2018 because the migraines made it hard to concentrate. She couldn’t risk forgetting the side effects of her patients’ medications or letting their health details slip her mind. Friendships were lost and damaged. Dating was nonexistent.
Depression set in for a couple of years. “I didn’t feel like I was worthy,” McCoy said. “I carried that for a long time.” She hoped moving from Los Angeles to Dallas would help. She started seeing a pain psychologist, using pain workbooks and gratitude journaling.
She wants other people in pain to know that their lives can still be fulfilling and that they’re worth advocating for.
Over the years, McJoy, the veteran, has learned to cope with her pain in similar ways. She arms herself with a checklist of concerns to talk through every time she visits the doctor to make sure they’re addressed, and she does not shy away from engaging the patient advocates in hospitals when she feels she’s not receiving quality care. Pain counseling taught her to express her needs.
She keeps bright clothes ready to slip on for the days when it’s hard to get dressed. She jams to a playlist of songs that make her feel happy and supported. She sits with her sewing machine. Takes long showers. Journals.
“I’ve even gone and yelled at the ocean,” she said, “because the ocean’s big enough to handle it.”