There was a period in my life when it seemed that everyone I knew was getting married. This period was followed shortly by the time when everyone was having a baby. After those two epochs came a long span of divorces. All of these periods were predictable enough. Today, I’m at a point that was harder to see coming: Everyone I know seems to have taken up running.
This was a somewhat unexpected development given the company I’ve kept for much of my life. I’m the person who, after a week of tryout matches for the junior varsity tennis team, was ranked only marginally higher than the young woman who had broken her arm the week prior and hadn’t bothered to either show up or remove her name from the roster. I didn’t achieve better results with any other sports, so I cultivated different hobbies — books, music, film — and hung around with folks who, like me, didn’t mind a largely seated approach to life.
I continued roughly in this vein, surrounding with (what I assumed were) like-minded individuals, until I woke up in my late thirties and found that every other unathletic person I knew was now training for a fun run, a triathlon, or something equally dire.
It would be one thing if these friends were all slouching along unappealingly in old corporate T-shirts, sweating through the seats of their shorts and making their efforts look unappealing. The problem is that they’re revealing themselves to be marathoners. These aren’t people who heave themselves down the block a few times to get their heart rates up long enough to feel justified in calling the activity a “workout.” These are folks who willingly undertake two dozen miles of misery, knowing full well that the activity itself was named for the city where some poor bastard dropped dead after doing the same.
And I envy them. In part, it’s because these folks feel entirely comfortable snapping photos of themselves devouring four-topping extra-large pizzas or family-size boxes of doughnuts after a successful race. What I really covet, though, is the almost spiritual experience runners seem to get out of bodily discipline.
As far as I can tell, looking in from the outside, it has something to do with the ritual — the almost liturgical activity of bending sinew to will, of forcing the meat self to serve the elevated mind — that makes runners feel apostolic, like secular remakes of Christian ascetics wandering the deserts, arriving at a higher, more complete place than the rest of us through their self-denial.
There’s an evangelical bent to runners, too, one that needs to divide life into before and after in the way youth pastors do. The dark period before running is one remembered half in shame, shapeless and void. In the after, with the buildup of mental and physical stamina, comes the wealth of successes in work, love, health, creativity. So my running friends tell me.
A few years ago, when this semireligious shift began in my social circles, I developed a morbid fascination with running. I call it morbid because running was something completely inaccessible to me, a person whose mobility was limited — and growing more constrained — by a progressive neuromuscular disease. At the time, I couldn’t walk the length of a room without my cane, carry on a conversation without getting winded, or drink a glass of water without the very real danger of choking or aspirating liquid into my lungs.
The idea that, in some distant future, I’d be able to run, to move elegantly through space, was an absurd one; my body stayed alive only with a constant input of expensive, powerful, toxic medicines, and even those were starting to fail me as my disease moved along its natural course. I wasn’t about to put on a pair of running shoes when even grabbing those shoes off the shelf and struggling them onto my feet was beyond my level of stamina.
Even so, the vague fantasy that I might eventually take up a light jogging habit let me hold onto the idea that someday I could discipline an unruly, disabled body — one that was always trying to die on me — into becoming a strong one, pliable to my will.
My dream of myself a crypto-runner was so strong that, as I was getting ready to undergo an aggressive and unpleasant surgery, a last-ditch effort at stopping the slow march of my disease, I bought a copy of What I Talk About When I Talk About Running, novelist Haruki Murakami’s memoir about his marathon habit and the ways that the discipline of the body became a conduit for his creativity.
On the surface, it was the wrong sort of thing to read in the weeks leading up to a surgery that would involve five hours, two surgeons, a large robot, and a video camera scoping around inside my chest. My concerns were different from Murakami’s. He was seeing how far he could push his body, while I was seeing how far mine could push me. But getting ready to be split open like a Christmas goose, I was doing my own kind of endurance training — a mental version that helped me cope with the inherent risks of the surgery, the months of recovery time, the pain that woke me up in tears.
In the months and years after the operation, it became clear that, at least to an extent, the surgery had worked. Over time, it became easier for me to breathe, so much so that I could call a friend and have a conversation. I could both chew and eat solid food again, and I enjoyed the hell out of things as mundane as carrot sticks, since I hadn’t been able to eat them in years. I could walk without a cane much of the time, provided I wasn’t going that far. The extent of my disability had shifted. My body was getting closer to being under my own control, subject to discipline.
But being able to eat a crudité isn’t the same thing as being ready to take up a marathon. And by now, the drugs I’d been taking for years — that I’ll probably take all my life — had eaten through my bones, making them so porous and brittle that I’d shrunk about an inch as my spine compacted into itself. There would be no running, my doctor warned me, unless I wanted broken bones.
I didn’t. Instead, I contented myself with unimpressive, low-speed workouts on stationary bicycles or slowly bobbing along on elliptical machines at the gym. For someone who hadn’t been bullish on seeing her fortieth birthday, unimpressive workouts — maybe any workouts — should have been pretty satisfying. But where was the transcendence? Where was the sublime self-discipline that everyone but me seemed to have?
It wasn’t long after the new year, when all such storefront gyms are packed on Saturday mornings before midwinter attrition begins, that none of my recumbent bikes or elliptical machines were available. I climbed up onto a treadmill, set the speed to a sensible pace, and started to walk, bored and galumphing along, irritated by the many faces of Donald Trump leering down from the line of televisions above me.
Then I turned up the treadmill’s speed. I knew it was a bad idea, and I did it anyway. I jogged, just a little, just to see how it felt. What I felt was a bone in my ankle snap.
My accident (if you could really call it that, since I hadn’t tripped or fallen or been knocked down, only ignored sound medical advice and followed the normal progression of physics) left me with a fractured ankle immobilized in a large, black boot, just about the time the Winter 2018 Olympics began.
During the games, I sat propped on my couch, leg up. Watching highly trained athletes compete in their sports, regardless of how bizarre some of those sports are, underscored the absurdity of cracking my own bones. For two weeks, hockey players beat one another about the head, slalom skiers wiped out into the woods, figure skaters either did or didn’t “quad,” and all appeared to emerge just fine while I’d lumbered along for a few minutes on a treadmill and trashed my ankle.
But what truly needled me was that, as I streamed the games on an app, I kept seeing the same, goading commercial over and over again in a ceaseless loop every time the broadcast cut away for a sponsored break. It was a Bridgestone Tires commercial featuring the Paralympic snowboarder Evan Strong.
I was pleased, at first, to see a Paralympian on screen. Given the fact that the Paralympic Games are barely televised, it was a happy surprise to see a disabled athlete with a brand sponsorship. In the ad, Strong, a good-looking, tattooed, earringed guy, is seated against a white background, talking about his success. But what bothers me is that Strong’s success, according to the commercial, hinges on his pain.
“You have to endure pain. You have to endure suffering,” Strong tells the camera, the look on his face bordering on disgust (which I can almost imagine is directed at little old me) as he tells the viewer how he became so good at what he does. It’s a bizarre choice for a tire brand to associate itself with people suffering, but that’s beside the point. What’s so strange about this commercial is the repeated assertion that pain is a good thing, a goal in itself. Pain is discipline.
The United States is at something of a crossroads with respect to pain and the need for people to endure it; it’s hard to open a newspaper without seeing a fresh set of statistics about how many people are dying as a result of what’s come to be known as the “opioid epidemic” as people misuse pain medication.
It’s undeniable that the data is scary, but what’s equally frightening is the way we’re responding: in our country’s health care system, there’s a rising trend of telling chronic pain patients that, instead of getting medical treatment, they should simply accept their pain.
In an article that appeared in the New England Journal of Medicine in 2015, Jane Ballantyne, MD, a Seattle-based anesthesiologist, and Mark Sullivan, MD, a psychiatrist who works with Ballantyne, put forward the idea that the way medicine has been going about pain is all wrong, and that the way we’re treating pain is itself responsible for the misuse of opioid drugs. They say there’s been a rise in pain in recent years, driven in part by an aging population, improved survival rates from illness and injury, and — trotting out everyone’s favorite scapegoat in any conversation about medicine — obesity. “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” Ballantyne and Sullivan ask. “We have watched as opioids have been used with increasing frequency and in escalating doses in an attempt to drive down pain scores — all the while increasing rates of toxic drug effects, exposing vulnerable populations to risk, and failing to relieve the burden of chronic pain at the population level.”
The population level is a strange choice of scale on which to measure something as individual and highly variable as pain — pain can’t be quantified in the same way new cases of lung cancer per year can be counted or the rate of people getting screened for HIV each year can be tabulated. That perplexing metric aside, Ballantyne and Sullivan say that, on an individual level, “over time, pain intensity becomes linked less with nociception [the nervous system’s processing of information in response to stimuli] and more with emotional and psychosocial factors…Willingness to accept pain, and engagement in valued life activities despite pain, may reduce suffering and disability without necessarily reducing pain intensity,” a statement that sounds all too familiar in its other forms — “it’s all in your head” or “just tough it out” — to many of us.
Ballantyne and Sullivan got a boost for this line of thinking when, in late 2017, their ideas, which they call “pain acceptance,” were featured in a podcast produced by Vox. The show explains that Ballantyne prefers to prescribe patients with chronic pain therapies like water aerobics and meditation, not pharmacological treatments.
To patients who have pain intense enough to require prescription drugs, the idea that water aerobics could be a substitute for — not a complement to — actual medical therapy may seem laughable. But troublingly, the idea of pain acceptance has managed to boil itself down in the minds of policymakers as a kind of tough-love, discipline-focused approach to pain that’s perhaps best characterized by Attorney General Jeff Sessions’ comments in a speech at the U.S. attorney’s office in Tampa Bay, Florida, in February 2018: “I am operating on the assumption that this country prescribes too many opioids…People need to take some aspirin sometimes and tough it out a little.” Sessions praised White House Chief of Staff John Kelly for refusing pain medication after he had a minor surgery, adding that “a lot of people — you can get through these things.”
The crassness of Sessions’ comments notwithstanding, his take on pain acceptance reveals some of the more frightening roots of how the idea came into being. While Ballantyne and Sullivan may be the new faces of pain acceptance, the idea gained much of its traction from earlier work by yet another anesthesiologist, Lance McCracken, MD, a prolific researcher who co-developed the Chronic Pain Acceptance Questionnaire that’s used to see how well patients are coping with pain. This is a document that includes rather leading statements, such as “My life is going well, even though I have chronic pain,” and asks patients to rank those statement on a scale of “never true” to “always true,” and then uses those responses to measure a patient’s supposed acceptance. McCracken has also put forward the idea that “acceptance-based clinical methods” form a new foundation of treating pain.
In 1999, McCracken used his own questionnaire in a study involving 230 patients who were seeking treatment for their chronic pain. Among the key assumptions in this study: “Acceptance of pain implies a willingness to experience continuing pain without needing to reduce, avoid, or otherwise change it.” Where did that idea — that we shouldn’t try to reduce pain — come from? Says McCracken, “The conceptualization presented here appears consistent with the literature on acceptance in relation to other emotional or behavioral disorders.” Yes, you read that correctly — other emotional or behavioral disorders. McCracken’s statement quite clearly lumps chronic pain into the bucket of an emotion or a behavior, and an aberrant one at that.
In analyzing the results of the questionnaires he collected, McCracken concluded that chronic pain acceptance includes engaging in “normal life activities,” “recognizing that pain may not change,” and giving up on the desire to control pain. McCracken admits his study has the shortcoming of being based entirely on his own questionnaire, saying “there was relatively little chance of finding factors that had not influenced the original writing of items” on the questionnaire.
Several years after McCracken arrived at this idea that chronic pain is a behavioral problem — a problem that someone could discipline an unruly body and an unruly mind to accept — and several years before Ballantyne and Sullivan put forward their perspective paper that would become a rallying cry for pain acceptance, a research team led by Diane LaChapelle, PhD, a psychologist who teaches at the University of New Brunswick in Canada, published research that threw the key component of McCracken’s ideal into question.
LaChapelle and her fellow researchers interviewed 45 women who had chronic pain. The study participants had rheumatoid arthritis, lupus, fibromyalgia, ankylosing spondylitis, or other inflammatory disorders that, while treatable to varying extents, remain incurable and cause chronic pain. LaChapelle wanted to gauge how women who hadn’t undergone cognitive behavioral therapy dealt with and processed their pain.
What they found through the process of speaking with these women was that — and this is a finding that probably won’t shock any person with chronic pain — they were remarkably good at adjusting to life with a chronic disease, even without the intervention of a therapist.
On the whole, the women LaChapelle interviewed followed a clear pattern that included redefining expectations of what a “normal” life looked like (an interesting contrast to McCracken’s idea that enacting normalcy lies the core of acceptance) and maximizing their quality of life within that new context. Without having to be told to do so by somebody like Jeff Sessions, these women sought out strategies like “exercise, diet, adequate sleep, humor, and maintaining social relationships,” in conjunction with medical treatment, and arrived at “a sense of control over their lives [that] seemed to be a necessary part of the acceptance process.”
But LaChapelle’s team found something else, something crucial: The idea of acceptance wasn’t cutting it for these women. They actively resisted the idea that living well with disease meant they were accepting pain. As one survey participant, identified only by the name Molly, put it: “I think acceptance is a rotten word.”
Other women described the experience as grief; rather than accepting pain, they were accepting loss — the loss of their pain-free selves and the things they were able to do before they got sick — even as they carried on with their lives.
Perhaps most important, LaChapelle writes, “the women did not believe that hope for improvements in their pain (potentially through improved treatment options) was incompatible with acceptance.” In essence, these women’s experiences with their pain didn’t jive with McCracken’s ideal of a willingness to experience continuous pain without any need to change it, reduce it, or alter it.
That seems to be the key: Accepting the reality and the fact that pain is part of one’s new normal is something patients do naturally, if only because there’s no other choice. Yet here’s a news story that could headline the front page of Unsurprising News Weekly: Patients also want less pain, and they don’t think that makes them models of aberrant behavior who are contributing to the misuse of opioid drugs.
That’s a finding borne out in conversations I’ve had with chronic pain patients, like my friend, the poet and professor Christopher Salerno. In recent years, Salerno has undergone multiple surgeries to address problems with his joints, giving him both acute postsurgical and chronic pain.
Salerno has accepted that pain is a part of his life, and his current approach to dealing with pain is “moderate use of medication and trying to keep up hope. This involves working regularly to keep my attitude from sinking, keeping love and gratitude in my life for who and what I have and what I am still able to do.”
He welcomes the idea that doctors might start having conversations about the emotional and psychological impacts of disease: “To have a spine surgeon suddenly suggesting that patients look at their thoughts and feelings — that hasn’t been popular in decades past,” and Salerno says he sees value in working through these elements of chronic illness and pain, “especially since the depression, fear, and anger that can accompany chronic pain is likely to keep some people in a loop of continuous tension, thus causing more pain. There is a cycle there to consider.”
But like the women in the LaChapelle’s study, Salerno isn’t ready to meet the McCracken standard of giving up hope that his pain can ever be reduced. “I’m also seriously considering whatever medical options I might have going forward to lessen the pain,” he says. “What I am doing to manage my pain is enough to allow me to perform my job as a professor and to get a decent night’s sleep and to carry on with the general tasks of an average person’s daily life. But beyond that, I am not able to use my body in the ways I used to, and I have very little endurance beyond the basic A-to-B daily mobility needs of the average fortysomething man,” he told me.
Other patients see the idea of pain acceptance not as a shift toward a holistic approach to treatment, but as taking part of a larger trend toward undertreating the medical conditions that cause chronic pain in the first place.
The writer and professor Sonya Huber, who chronicled her experience with chronic pain caused by rheumatoid arthritis in the book Pain Woman Takes Your Keys, told me she sees “huge dangers” with the idea of pain acceptance. “We are already, in the U.S. at least, in an era of widespread medical neglect…People with all kinds of chronic conditions are routinely denied treatment for reasons having to do with cost and for the purpose of generating profit, as well as immoral methods of sorting the supposedly ‘deserving’ from the ‘undeserving,’” Huber said.
In the early days after her diagnosis with rheumatoid arthritis, Huber’s insurance company denied her the MRI scan that would have given clear evidence of the joint damage caused by her disease. That radiographic evidence was also required by her insurance company before she could get access to the most effective drugs — expensive biologic medications — to treat her disease. Instead of benefitting from an early intervention that could have pushed her rheumatoid arthritis into remission, she was forced to remain on older, more toxic, less effective drugs and to live with chronic pain.
“It’s haunting to think I might have had a completely different disease trajectory if I’d been treated promptly. Now the odds of remission are very low for me, as I’ve been mostly flared up for nine years,” Huber said, adding that pain acceptance “can’t be separated from denial of treatment, because there is such a long record of people — particularly women and/or people of color — being undertreated for pain. Insofar as ‘pain acceptance’ is an excuse not to treat, it is not part of medical treatment.”
As far as accepting the presence of pain in her life, Huber told me that, as a Buddhist, she agrees with the sentiment behind the much-trotted-out phrase that “pain is inevitable, but suffering is optional.” At the same time, “I don’t get up every day feeling that truth in my bones and my body…There are all kinds of ideals that human beings try to embody through their spiritual practices,” she said. “However, what we so often do with the chronically ill is take the highest ideals and make them the median expectation. Rather than having my highest goals for myself be to let go of my suffering, I’m now just expected to do this every day so I can be less of a drain on the medical system and more inspiring for abled people. This is very American: to require those who are suffering in some way to be morally pure, and then to be only eligible for assistance from others if we fit that narrow definition of purity.”
And the American medical system continues to push for greater purity, most recently through a proposed limit on how much pain medication patients will be allowed to access.
Earlier this year, the Centers for Medicare and Medicaid Services (CMS), the entity that runs single-payer health plans for seniors and low-income patients (and whose lead private insurance plans typically follow in matters of policy, if not in matters of high prices), proposed a strict limitation of a seven-day supply of opioid-based medicine and a maximum daily dosage of just 90 milligrams, for all patients, even those in hospice.
The opportunities for this policy to cause intense human suffering are many: The person with metastatic cancer who needs more than a 90-milligram dose of her medicine just to reduce the worst of her pain, the poor person who lives in a rural area where he has no regular access to a pain specialist or funds to pay for one, the person with a connective tissue disorder who can’t get to the pharmacy once a week because she lacks accessible transportation — all of these people are hurt, on more levels than the physical, when they’re denied access to their medically necessary care. And it’s a policy that flies in the face of a warning from Dr. Vivek Murthy, the surgeon general under the Obama administration, that we cannot “[allow] the pain-control pendulum to swing to the other extreme, where patients for whom opioids are necessary and appropriate cannot obtain them.”
Even people who use other kinds of drugs to help with chronic pain aren’t off the hook. Under the CMS proposal, patients treated with a nonopioid pain medication like gabapentin will be flagged in a tracking system. Why would the government need that kind of data about people taking their appropriately prescribed meds? Despite the fact that the Centers for Disease Control and Prevention (CDC) recommends using gabapentin and pregabalin for first-line treatment for neuropathic pain, CMS worries that these are drugs someone might choose to mix with an opioid. Never mind the fact that peer-reviewed evidence supports using multimodal pain treatment, including the combination of opioids with gabapentin and pregabalin.
These proposals also ignore the evidence on how pain drugs are being prescribed: By the government’s own measurements, over the past decade, the dosages of average daily prescriptions for opioids have rapidly decreased by well over 20 percent. Even more significantly, the rate of prescribing long supplies — a month or more — has fallen by more than 50 percent.
If patients with pain are taking fewer drugs that help them, why do people keep dying of overdoses? The answer, according to evidence — again, from the government itself — is illegal fentanyl, sometimes blended with heroin, which was responsible for 97.1 percent of all deaths from opioid overdoses. Note that this is not prescribed fentanyl administered by a physician to the sickest of patients, but a counterfeit drug, typically — according to the government’s own evidence — manufactured in “clandestine laboratories.” In fact, one state report says that fully 92 percent of people who died from an overdose hadn’t been prescribed an opioid drug at all in the month before they died.
It would be simple to assume that people who die after using illicit fentanyl probably developed a habit with something safer — something prescribed by a doctor. But the evidence shows that it’s not as tidy as the “gateway drug” mode of thinking; abusing a prescribed drug appears to have a significant link with already using illegal drugs like heroin.
That points to something we already know (and that the U.S. government already knows, on the basis of its 2016 report from the surgeon general’s office): Addiction is a complex illness, and it needs intervention and evidence-based treatment. Simply cutting off a supply of necessary, prescribed medications from people who need them doesn’t do a thing to stop overdoses. Facts notwithstanding, Jeff Sessions, the guy who wants you to take an aspirin, is asking the Drug Enforcement Agency to consider imposing stringent new quotas on how many pain drugs can be manufactured each year, even as current quotas have led to hospital shortages of critical medicines.
In case you wondered, people who need addiction treatment aren’t going to get it under that CMS plan — medical therapy won’t be funded. That makes a bad situation worse in rural areas that have been hard-hit. In Oklahoma, to take one example, only about 10 percent of people who need help have access to it, and the fact that the government has proposed slashing the Medicaid budget means even fewer people will have access to medical interventions. Perhaps the government is trying out overdose acceptance.
In a last-ditch effort to change CMS’ mind on its misguided proposal on pain drugs, a group of doctors who treat patients with pain have submitted on the government docket (and made available for public viewing via Google Docs) a comment letter roundly opposing the policy.
Authored by Dr. Stefan Kertesz, of University of Alabama’s Birmingham School of Medicine, and colleagues, the comment letter argues that CMS’ plan will lead to physicians abandoning patients who need higher doses of their medications because doctors may simply prefer to stop treating complex cases rather than take part in CMS’ “risk-laden and cumbersome decision matrix.” The letter also points to evidence that taking away patients’ much-needed medication nonconsensually can lead to emotional trauma, and even suicide.
It’s anyone’s guess as to whether CMS will take any of this accumulated evidence into consideration. All signs point toward the agency forging ahead with regulations that will punish chronic pain patients for the problem of addiction, a problem the government refuses to address in a meaningful way because it would mean loosening its purse strings to invest broadly in medically assisted treatment for people who desperately need help. Pain acceptance is cheaper, after all, even if it doesn’t work. Even if it harms vulnerable people.
I understand the temptation to look at the body as a thing that can be disciplined out of its unruly ways — something that, with the application of enough will or moral fortitude can be made to behave, to be quiet, to stop its complaining. After all, I broke my own bones over the fantasy that I could will my body to be something that its very cells are incapable of becoming, and the dull ache I have every time I step on my right foot is here to remind me of that fact. But people who live with daily, incurable pain aren’t going to accept, meditate, or water-aerobics themselves free of their bodies or their pain any more than I’m going to discipline my lacy bones into carrying me through a marathon.
The body has its own rules, and its logic doesn’t hinge on America’s moral panic over pain, just as it doesn’t hinge on my daydreams about achieving transcendence on a treadmill. We have a long way to go in separating the reality that pain and disease are bad from the falsehood that they are immoral. We have an even longer road toward reflecting that understanding in humane public policy and appropriate delivery of health care. But I’m starting with myself, and with the belief that the body — my body — even when it’s unruly, is worthy of care and compassion. Even when it’s broken, and even when it hurts, the body itself is good.