As I hurried to an important meeting about my Ph.D. dissertation one day in 2015, I slipped and fell on Iowa’s formidable winter ice. I quickly jumped up to prevent anyone from seeing me on the ground and got into my car. The immediate, excruciating pain told me that something really bad had happened.
As I drove to my meeting in tears, I called my sister. “I just busted my butt,” I told her, not knowing then I had actually fractured my sacrum. I thought that maybe over the next few days the pain would get better.
It didn’t. A few days later I asked a friend to drive me to an urgent care clinic. The clinicians there sent me to the local emergency department.
Part of me wanted to find out why I was in such pain and get treated to relieve it. Another part of me — my research centers on deconstructing the experience of chronic pain in Black older adults and trying to understand and interpret the intersections of structural racism, ageism, sexism, ableism, and economic classism — wanted to see what would transpire if I, as a young Black woman, didn’t disclose that I was a registered nurse or a Ph.D. student studying disparities in chronic pain experiences. I chose the latter.
Long story short: None of the clinicians who saw me in the emergency department asked me to rate my pain. None offered me any treatment — not even a Tylenol or a pillow for positioning — during my nearly four hours in the emergency department observation room. And no one checked on me to determine if my pain was better or worse.
In some disbelief, I asked myself, “Is this what Black people endure in clinical settings?” I sat there realizing how much this experience reflected what my research had been telling me. Like so many adults I had interviewed, I was now left to determine how I would move forward from — or with — this chronic pain.
The U.S. health care system has not been effective in acknowledging and treating pain, especially among Black and other minoritized people. Chronic pain and its unequal treatment need to be acknowledged as a public health problem, a health disparities priority, a moral imperative, a civil rights infringement, and a human rights violation.
What many experts fail to understand — including myself for many years — is that using a disparities-only lens focusing on the deficits, defeats, and demoralization of people living with pain isn’t the most effective way forward. As a Black nurse researcher, I believe that pain management of the future must center justice as its core operating principle and adopt two synchronized actions: creating systems of equity and delivering pain-affirming care.
Driving forces of the future of equitable pain care
Black adults, in particular, have had to contend with identity-based bias when seeking pain care, including implicit bias from providers primarily based on their race, gender, age, and cultural and behavioral expression.
The Advil Pain Equity Project’s first campaign, Believe My Pain, launched in partnership with Morehouse School of Medicine and BLKHLTH, focuses on illuminating the issues of pain disparities, inequities, and injustices in Black communities and championing equitable and accessible pain relief solutions. An equitable system of pain management affirms the individual’s experiences of living with pain regardless of identity, confirms the cause of pain (when possible), and uses unbiased, evidence-based treatments in a timely manner.
Pain-affirming care is an empathy-driven and personalized approach that integrates evidence-based care, principles of equity and intersectionality (which means recognizing that an individual’s overlapping identities affect life and social experiences as a result of either oppression or privilege), and population-health measures to ensure that every person living with pain is taken seriously, is treated without judgment, and receives the best and most just care consistently. This must include empowering adults with pain with the skills, confidence, and resources to access all appropriate treatments.
Early in my journey with chronic pain, even I as a pain management expert had to advocate for a prescription for a muscle relaxant and later for physical therapy to try transcutaneous electrical nerve stimulation.
Top recommendations to get us there
Health care providers, researchers, and the public must shift their belief away from drug seeking to comfort seeking, knowing that people seek medications because they need and desperately want relief from pain. I am grateful that over time my pain has decreased significantly, and I am able to identify the triggers and manage those well. But what about people who look like me and continue to struggle with chronic pain? What should the future be for them?
It will take a collective effort from health care systems, research experts, funding agencies, insurance payers, policy makers, and community organizations to transform the future of pain of management. Avenues for creating equity and pain-affirming care include:
Community engagement equity: Expand opportunities for underrepresented communities to contribute to pain care reform, create chronic pain support groups in under-resourced and underserved communities, and offer education and free screenings for conditions known to cause chronic pain.
Resource equity: Develop community-based pain resources centers (not to be confused with pain management clinics) to help with navigation to health care resources, pain medication affordability, pain self-management education, and the like.
Pharmacoequity: Expand access to pharmacogenetic testing to determine the safest and most effective analgesic medications, ensure fair opioid prescription, establish monitoring and regulatory compliance policies that do not criminally target communities of color, and reduce prescription cost gouging and pharmacy deserts.
Tech equity: Widen responsible use of artificial intelligence by clinicians and researchers to predict patients at high risk for pain, undertreatment, or poor pain control, along with expanded access to smart technologies and devices for pain treatment and self-management.
As I learned the hard way, everyone is just an injury or medical emergency away from chronic pain. Pain management of the future is not five or 10 years away. It should start today by upholding the civil rights of racialized populations, thus creating healthier lives and communities with less pain. Failure to do so will serve as the dominant modus operandi keeping a nation riddled with chronic pain and adverse economic and social impacts for generations to come. In the words of Malcolm X, “We want justice by any means necessary. We want equality by any means necessary.”
Staja “Star” Booker, Ph.D., R.N., is an assistant professor of nursing at the University of Florida College of Nursing and a 2023-2024 Mayday Pain and Society Fellow.