Hannah holds hands with her little sister, Paloma, during a bout of severe pain.
Chronic pain affects approximately 100 million people in the United States, myself included. I’ve suffered from chronic migraines since I was sixteen years old. I have gone to a neurologist, physical therapists, massage therapists, and acupuncturists. I’ve also tried various medications, including oxycodone – an opioid used to treat severe pain. And yet, I am profoundly lucky. As a white woman, I’m privileged to have the support of an empathetic and loving caretaker community as I navigate a health care system that typically overprescribes pain medication and is fraught with stigma. I have a wonderful primary care physician and an incredible network that work with me to make my world a better, less painful place.
What does this mean for me? It means my doctors believe my pain and provide me with safe tools in my continuous work toward recovery. It means my doctor sees me as a whole person and when she treats my pain, she approaches it with an understanding of my priorities – that I want to have the capacity to continue with work that fulfills me and be able to garden and travel. She doesn’t just write me a prescription, she values my perspective and works with me to make my life as pain free as possible. This holistic approach toward recovery goes beyond my primary care physician – my community provides me with a similar level of support and compassion. My coworkers are understanding and encourage me to turn the lights off in our office whenever they’re exacerbating my migraines. My health insurance helps reduce the cost of my medications to make them accessible. Still – after nearly eight years of living with chronic migraines and trying everything under the sun to alleviate my pain – I have come to terms with the understanding that I’ll always be in a cycle of medication and treatment.
My primary care physician monitors my medications closely and only prescribes opioids when my pain reaches a certain level. When I am prescribed emergency opiates, my family and friends make sure they’re there to monitor and support me. I am encouraged to treat my pain holistically. I have never been called a derogatory term like a druggie or an addict, despite being on several prescription medications that sometimes include opioids. I don’t feel ashamed by my chronic pain. My family and friends don’t stigmatize my need for medication and medical support – in fact, they often encourage me to do more to decrease my pain. My privilege is why I’m able to receive the best care possible. I don’t feel ashamed by my chronic pain.
Dr. Andrew Kolodny, co-director of the Opioid Policy Research Collaborative at Brandeis University, researched the ways in which doctors prescribe narcotics more cautiously to their non-white patients.1 Kolodny’s research suggests that this practice is due to racial stereotyping. He theorizes that doctors are “more concerned about the [non-white] patient becoming addicted, or maybe they’re more concerned about the patient selling their pills, or maybe they are less concerned about pain in that population.” Patients of color aren’t receiving the care they deserve and legitimately need.
At the same time, communities of color are also largely left out of the conversation surrounding the opioid epidemic. Media representation of the epidemic has overwhelmingly indicated that opioid misuse predominantly affects white communities. This system of racial stereotyping, stigma, and media misrepresentation is claiming lives and failing entire communities.
This characterization of the opioid epidemic as overwhelmingly white has contributed to inequities in the way health care providers, nonprofit organizations, and the government respond to the epidemic. According to the Kaiser Family Foundation, black people made up 12 percent of all opioid-related fatal overdose victims in the United States in 2017,2 which is roughly proportional to the number of the African-Americans in the United States population.3 In Massachusetts alone, the rate of opioid-related deaths has continued to decrease over the past 5 years in white and Hispanic populations but has steadily increased for African-Americans.4 Additionally, media attention focused on the opioid epidemic has left individuals affected by other substance use disorders out of the conversation. For example, black men died from cocaine overdose at rates as high as white men who died from opioids between 2012 and 2015.3 The misrepresentation of the epidemic in media attention, the stigmatization of pain experienced by people of color, and racial stereotyping have all deeply impacted the pervasiveness and severity of this epidemic.
In addition to the inequitable approach to pain management, the stigmatization of substance use disorders also contributes to many individuals’ inability to access the care they need. Societal perceptions of people with substance use disorders as addicts engaging in criminal and immoral behavior reinforces harmful power dynamics and impacts the way health care providers view and treat their patients. The Journal of Drug Issues asserts that “Exposure to the ‘abuser’ label may elicit or perpetuate stigmatizing attitudes, increase perceptions of the need for punitive action, and decrease perceptions of a need for treatment.”5 What if I couldn’t get the pain medication or medical care I need, simply because I was perceived as a drug “abuser”? What if my doctor didn’t believe my pain? As a white woman, I have had the privilege of easy access to person-centered, recovery-focused, and holistic care. All patients deserve the same, and should be seen as humans first, and patients second. All patients deserve respect, compassion, and justice.
The IHI Open School Recover Hope Campaign is working to dismantle the systems of pain management in our health care and health systems that stigmatize and perpetuate dangerous and inequitable prescribing practices. We believe that the first step in this journey is to change the narrative: to recognize substance use disorder as a chronic medical condition – not a moral failing – and to see people with substance use disorders and chronic pain as deserving of empathy, respect, and high-quality treatment. I have received holistic, patient-centered care throughout my medical journey. My family, friends, and physicians don’t stigmatize my chronic pain, nor do they blame me for my migraines. My pain management story is not the norm. I don’t have to fight for my own access to just, high-quality health care, so instead I’ll fight so that others can receive the same.
I pledge to use person-first, recovery-focused language by signing the Change the Narrative pledge. I will say drug use or misuse instead of stigmatizing language like drug abuse or drug problem. I will work to change the narrative from despair to hope and replace judgment with empathy, compassion, and love. I will recover hope. Will you join me?
- National Public Radio. Why is the Opioid Epidemic Overwhelmingly White? November 2017. https://www.npr.org/2017/11/04/562137082/why-is-the-opioid-epidemic-overwhelmingly-white
- Kaiser Henry J. Kaiser Family Foundation. Opioid Overdose Deaths by Race/Ethnicity. 2017. https://www.kff.org/other/state-indicator/opioid-overdose-deaths-by-raceethnicity/
- Shihipar, A. The Opioid Crisis Isn’t White. The New York Times. February 2019. https://www.nytimes.com/2019/02/26/opinion/opioid-crisis-drug-users.html
- Bebinger, M. Opioid Death Rate Declined in Mass. In 2017 – Except for Blacks. WBUR. May 2018. https://www.wbur.org/commonhealth/2018/05/22/opioid-overdose-deaths-2018-first-quarter
- Kelly, J., Dow, S., Westerhoff, C. Does Our Choice of Substance-Related Terms Influence Perceptions of Treatment Need? An Empirical Investigation with Two Commonly Used Terms. Journal of Drug Issues. October 2010. https://journals.sagepub.com/doi/abs10.1177/002204261004000403