We’re Thinking About Pain All Wrong
For many years I’ve written about people suffering intractable pain, and how their agony and increased risk of suicide and death has been ignored in the rush to end the overdose crisis.
I’ve told the story of a woman who hoped for a cancer diagnosis since it might mean that her chronic pain, which already felt like “pouring acid on” her skin, would get better treatment. I’ve written about a father who was paralyzed from the waist down, left in excruciating pain and using a wheelchair following a car accident, who died by suicide the day a doctor cut off his medication. I’ve chronicled the story of a woman with a torturous genetic disorder who keeps a growing list of untreated-pain-related suicides.
There are countless other accounts like these. Between five million and eight million Americans currently rely on opioids to treat chronic pain, and thousands need them for end-of-life pain at any given time. Despite their risks, opioids remain the best available pain treatment for many patients — and there is little evidence that addictions are prevented or treated by denying them to those who have already used them safely for years. Concerns about the harms associated with indiscriminate cutbacks have been raised by the Centers for Disease Control and Prevention, the Food and Drug Administration and major medical organizations.
Nevertheless, doctors continue to abandon these patients while the overdose crisis worsens. Since 2012, the dosage strength of opioid prescriptions decreased by 60 percent, while prescriptions themselves fell by nearly half. During that same time, the age-adjusted rate of opioid overdose deaths in the population has more than tripled. And now the Drug Enforcement Administration wants a further 8 percent cut in manufacturing quotas for some opioids in 2024, even though shortages detrimental to treatment are already being reported by physicians.
Why is it so hard to get policymakers to address this unnecessary suffering? Why don’t we seem to care about people in pain, who are just as much victims of the opioid crisis as people with addiction? Why does almost none of the money from the recent settlements with opioid manufacturers — whose marketing drove the rise in prescriptions — seem to be aimed at better treating those who are hurting now?
The answer lies in understanding the psychology and politics of pain and addiction — and recognizing how, unconsciously, many of us shut down our empathy for those in pain, both in order to protect ourselves and to sustain our vision of the world as being fair and predictable. Some 20 million Americans experience pain so severe that it is disabling. Few of us will live out our lives unaffected.
The trouble starts with language; few words exist to convey the severity and horror of intense pain. As Virginia Woolf noted, “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache … let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
Our muddled language for pain may be caused by the strange ways pain affects memory. Once pain is gone, there’s an overwhelming desire to try to avoid its return. But recalling the specific sensation is surprisingly difficult and subject to distortion.
However, perhaps the deepest reason for our refusal to care about pain is the stigma associated with it, which is enabled by its invisibility and subjective nature. Pain as a deserved punishment is a primal story in many religions. In the Bible, notoriously, women were condemned to the pain of labor for Eve’s sins. Hell itself is often characterized by unending agony.
Not surprisingly, the stigma around pain is heavily associated with bigotry. Women are more likely to be seen as exaggerating their pain. Decades worth of research finds that Black people are far more likely to have their pain undertreated and to be viewed as “drug seeking.”
The opioid crisis magnified this narrative. Pain patients were blamed for trying to take the easy way out, enabling Big Pharma to unleash dangerous drugs on innocent white people who, as the stereotype has it, are not typically affected by addiction. “We’re the reason that people’s kids are dying on the street, because we deign to take this medication and not bear up,” said Kate Nicholson, who has suffered severe chronic pain and is the founder and executive director of the National Pain Advocacy Center (which does not take pharmaceutical industry money).
Why do we attempt to rationalize pain as a deserved punishment or a fit of hyperbolized acting by the weak or lazy? Daniel Goldberg, an associate professor of bioethics at the University of Colorado, says that one important aspect is fear. We don’t want to believe we could be stuck in unremittable agony, so we look for differences in those who are afflicted and point to those traits as reasons for their suffering.
Moreover, the idea that pain could be randomly inflicted on the undeserving makes a mockery of attempts to find moral order and justice in the world. It’s easier to avoid this existential dread by assuming that other people must somehow deserve their pain — or be faking it to avoid work — than it is to face the fact we’re all at risk. (In psychology, this is known as the “just world” hypothesis.)
Dr. Goldberg has studied “railway spine,” an invisible pain condition said to affect people hurt in train crashes in the 1800s. “Railway spine was basically seen as a deception, a form of malingering” used to win lawsuits, he explained. The claims that the injury wasn’t real, of course, were made by railroad lawyers. Some even called the condition “litigation neurosis” in an attempt to avoid payouts.
These ways of dismissing pain are convenient not only to assuage personal fear but also to rationalize inequality and racism — here, both the poor and the rich, the blissful and the suffering, deserve what they get.
The reality, however, is that we are all just one accident or illness away from severe pain. Rejecting and punishing the afflicted doesn’t change this fact, nor does it help treat addiction. “The pain crisis and the opioid crisis are really one and the same,” said Oluwole Jegede, an assistant professor of psychiatry at Yale School of Medicine. “We cannot address one without addressing the other.”
Medical opioids are useful for some types of physical pain; opioid addiction is driven primarily by emotional pain. Cutting the medical supply worsens both problems because it does not relieve either type and can lead the most desperate to street drugs, which are far more dangerous.
Instead, we need to accept and empathetically inhabit the idea that all of us are just one accident, one genetic glitch, one illness away from joining them in their suffering. Even if only for selfish reasons, we must fight to treat pain humanely and effectively because, yes, it could happen to us. And it likely will one day if we live long enough.
Maia Szalavitz (@maiasz) is a contributing Opinion writer and the author, most recently, of “Undoing Drugs: How Harm Reduction Is Changing the Future of Drugs and Addiction.”
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