In 2000, a truck rear-ended my friend Andrea’s car as she stopped at a crosswalk in a school zone. The truck was going at least 45 miles per hour when it slammed into her. The accident damaged muscles, nerves, and bones from the base of her skull to the bottom of her left leg. It left her with an injured spine, pelvic instability, and significant leg injuries. She has been living with chronic pain ever since.
Andrea rarely takes opioids; she says they make her feel incredibly drowsy and often don’t work well to control her pain.
Yet she frequently experiences intense stigma when seeking care for her pain. Health care providers often regard her pain as a kind of personal weakness. Many of them have told her that “she doesn’t look like she is in pain.” She has lost count of the number of times she has been told that if she just lost weight, her pain would lessen.
Andrea isn’t alone. Millions of people who live with chronic pain experience intense stigma.
I view stigma as the combination of difference plus deviance: An in-group marks an out-group as different on the basis of a shared demographic characteristic, then judges the out-group as deviant. This is precisely what happens to many people in pain. They are marked as different because of their pain, and then have that pain denied, invalidated, and delegitimized. This is more likely to happen to women and racial or ethnic minorities than to white men.
Stigma is fundamentally social. Although we often speak colloquially of pain, or illnesses like HIV/AIDS, stigmatizing people, that isn’t correct. It is always people who stigmatize other people. We do this to each other.
Pain-related stigma can come from anyone. Health care providers are a major source of it, but so are intimate partners, family caregivers, insurers, and policymakers. Chronic pain sufferers sometimes stigmatize other people with chronic pain, perhaps because the difficulty of living with such a condition makes it harder to countenance in others. And people in pain sometimes stigmatize themselves. When you are told repeatedly that your pain is invalid or illegitimate, after a while it becomes easy to believe that. People in pain do not have the luxury of denying the existence of their own pain, but they can and do judge it.
That is one of the catastrophic impacts of stigma: It can spoil individuals’ identities, their sense of who they are as persons.
Sadly, stigma is a terribly common problem for people in pain, and has been for close to 1,000 years.
This matters, because stigma is corrosive. Members of groups subjected to persistent stigma get sicker and die quicker. This is partly because stigma is a barrier to care. Who wants to visit their provider if they feel like they will be judged and blamed for their illness, or have their experiences denied or invalidated? But even when they do seek care, stigma worsens chronic disease outcomes.
Why do we attach so much stigma to people in pain? One likely factor is that pain is subjective. This means that the ability to diagnose and treat pain effectively depends in large part on what people say about their pain. That subjectivity is a problem for Western medicine because it is built on the ability to identify physical, identifiable pathologies that can be linked to illness. Most kinds of chronic pain defy this easy objectification, which frustrates the dominant Western framework for knowing and understanding illness. And because chronic pain can’t easily be objectified through clinical tests — blood work, lab tests, imaging, and the like — it is ripe for doubt and skepticism.
Stigma is so deeply rooted in our society that it can shape laws and policies at the highest levels.
Consider the regulations that govern access to Social Security benefits for disability. They say that a claimant’s own testimony is insufficient to justify benefits and specifically require “objective medical evidence” to do that. This doesn’t make sense, since virtually every clinical guideline for treating pain stipulates that a patient’s self-report is the single most important tool for effectively diagnosing and treating pain. These regulations effectively repudiate one of the most fundamental and critical tools for taking people in pain seriously.
The Social Security regulations also explicitly note that evidence from X-rays and laboratory tests such as blood work are forms of evidence that can be used to “prove” a disability sufficient to generate access to Social Security benefits. These regulations systematically disenfranchise most people in chronic pain, who are unable to provide the needed proof via these preferred forms of evidence.
In essence, our basic social safety net channels and reflects the widespread stigma that people in pain experience.
The mention of X-ray evidence in the regulations is especially interesting given the staggering amount of medical imaging we do for nonspecific low-back pain, one of the most common forms of chronic pain experienced by people in the U.S. Researchers can’t find much evidence that this imaging benefits people with low-back pain in any way. Yet doctors order it often.
Doctors alone aren’t to blame. Patients want such imaging, too, as a way to provide testimony that is more valued and seen as better evidence of their pain. People in pain can’t be blamed for wanting medical imaging even if there’s little evidence it helps.
In addition to being bad for physical health, stigma is also morally bad. It is among the most antisocial and alienating experiences humans can inflict on each other. It isolates people, causes suffering, and violates basic obligations to treat people fairly and with dignity. Accordingly, we should intervene to alleviate it.
Like most significant health problems in the U.S., the root causes of stigma are structural. This means that interventions used on the interpersonal level, like anti-stigma education and training programs, are likely to have only limited success. To be successful in reducing the stigma that millions of people in pain endure, we must address the deeper factors driving it, including our tendency to disregard individuals’ narratives and testimony in the absence of “objective” evidence. We must also address the sexism and racism that without a doubt contribute to the terrible and growing inequalities that exist in the diagnosis and effective treatment of people in pain.
One of the most promising approaches to reducing pain stigma is addressing laws and policies that intensify stigma toward people in pain. This might include revising laws at the state and federal levels, strengthening antidiscrimination protections, and enforcing existing laws that aim to alleviate stigma against people in pain. State laws that prohibit elder abuse, for example, can be used to mandate effective pain management.
Changing local policies can also make a difference. The policies of a health system that treats thousands of people in pain can have a huge impact on the extent to which people in pain are stigmatized. These policies include whether we force people in pain to sign demeaning, one-sided “pain contracts” or submit to random drug testing, use language that conveys hostility and suspicion, and countless others that sustain and perpetuate attitudes of doubt, distrust, and disbelief.
While changing federal or state laws takes time, local policies can change far faster. We could, for example, change or abandon commitments to policies and protocols that entrench and legitimize the tendency to stigmatize and doubt people in pain. We can implement policies and procedures that detail antidiscrimination requirements specifically for people in pain. And we can enact policies that govern discriminatory language and terms often directed against people in pain — like hysteria and malingerer — which have long and documented histories of being used to stigmatize vulnerable people in pain.
To alleviate pain stigma, we also have to decouple it from the stigma directed toward opioid use. While these two types of stigma often occur in the same spaces, they are not identical. We stigmatize people in pain, like my friend Andrea, who neither take nor desire opioids. And we stigmatize individuals who take opioids even if they do not live with chronic pain. A focus on opioid stigma is welcome and important, but it is not equivalent to intervening specifically to address pain stigma. Both of these terrible burdens deserve our attention and efforts.
We have tools to effectively and fairly treat people who live with chronic pain. We have the power to help them live better. We should do so, and without stigma.
Daniel S. Goldberg is a faculty member in the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus, associate professor of family medicine at the University of Colorado School of Medicine, and associate professor of epidemiology at the Colorado School of Public Health. He is the principal investigator of an epidemiologic study related to addiction stigma funded by The Well Being Trust, a 501(c)(3).