This story is adapted from The Song of Our Scars: The Untold Story of Pain, by Haider Warraich.
I never knew what my back did for me until I broke it. Turns out, it did everything. It helped me stand, sit, and lie down. It helped me walk and run. But now a disc was bulging into my spinal cord, sending chills down to its tail and all the way to my toes. My entire body became tense, a rubber band stretched to its wavering limit.
I was 20 years old and my expansive life was suddenly reduced to my dorm room, barely bigger than a bathroom. Sitting in a car could be agonizing. A staircase loomed like an impassable wall. It hurt so much to walk to the common bathroom that I often peed in the sink in the room. At my worst, I couldn’t even get out of bed, even though it hurt so much just to lie there. My physical shackles also locked me out of my social life. If friends weren’t kind enough to come to my room and take pity on my pathetic existence, I would never be able to see them. I ran short of friends quickly.
Even as small as my room was, I couldn’t attend to it since my back commanded all my attention, all the time. It not only trapped me in a claustrophobic physical space but also jailed me in the one point in time I wanted nothing to do with—the now. Pain prolonged every second I lived, making every micro-decision arduous, making every day feel like an eternity. As much as I wanted an escape from my agony, I remained locked in place as the pain sapped every joy I could ever experience.
Like prison, chronic pain can take a person’s community away from them. Many patients attempt to rectify that loss of social support by seeking medical help. “Sometimes people come to the health system looking for that, but are likely to be disappointed,” said Drew Leder, an anthropologist and chronic pain sufferer. “The insurance companies don’t reimburse for emotional support. It can leave someone very unheard.”
Finding a diagnosis for chronic pain is the only way to get one’s sentence cut short. While a diagnosis might help with treatment, to the person in distress it can provide something even more coveted: meaning. And yet the nature of chronic pain means that, far from being an ally, for many people, the health care system becomes as much an antagonist as their ailment.
We may have entered the age of big data, but to understand the experience of those living in pain, the gold standard remains good old-fashioned qualitative research. To canvass what we know about what chronic pain has wrought upon people, the National Institute for Health Research (NIHR) in the United Kingdom funded a meta-ethnography, a collective analysis of what patients with musculoskeletal pain go through. The researchers screened more than 300 studies, selecting 77 to synthesize the report. At more than 200 pages, the report is an essential dissection of this ailment and the people it afflicts.
The researchers identified five themes that define the struggles of patients with chronic pain. The first two—the fights to affirm oneself and to reconstruct oneself in time—were a direct function of this disruptive disease. People with chronic pain are contending with a body gone rogue and threatening to evaporate their identity. The disease fractures their sense of time, leaving them paralyzed in the moment, unable to plan for the future or be spontaneous.
What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine, the clinicians it has trained, and the health care systems it has propped up. Far from providing relief, the medical system can leave many with chronic pain worse off than they were before.
There is no force that pushes us toward introspection quite like pain. The person in pain, as I know from experience, is hypervigilant, focusing on every twist their body takes and every surface their body touches. Such hyper-awareness can be incredibly taxing, and it can often misfire, causing one to ruminate on every ache, every twinge.
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The struggle to find an explanation for suffering is a direct artifact of the practice of medicine, in which meaning comes from a diagnosis. A diagnosis opens all sorts of doors for patients, reflecting how a doctor’s scrawl on a pad or some hastily typed words in the computer can impact someone’s entire life. It gives them hope for permanent liberation rather than ephemeral relief. It lets them feel like they have a physical disease rather than a mental condition, that what they have is “real” rather than in their heads. When they stand in front of an X-ray machine or are stretchered into the doughnut-shaped void of an MRI machine, almost every patient with chronic pain hopes something will light up, that something broken will be found. The last thing they want to be told is that everything looks good.
How we treat pain, how we view human suffering, has changed considerably since the end of the 19th century. Modern science changed human life so rapidly that it gave people “future shock.” One would think that seismic shift would reverberate nowhere more powerfully than in the body of the man or woman in agony. Yet, when it comes to how a pained person is treated by the modern health care system, far from progression, there has been a regression, reflected most directly in the fourth theme the NIHR researchers highlighted: how people with chronic pain struggle to negotiate the health care system.
When Lara Birk’s right leg collapsed in the middle of a soccer game, she initially thought she’d developed shin splints; she’d been running a lot that summer, training to play for the varsity squad as a junior. But the pain seemed to be out of proportion to that. No one at the field could tell what was going on, and eventually she was sent to the emergency room.
“The doctor kept telling me to stop being a crybaby. He kept asking my dad questions and wouldn’t even make eye contact with me,” she told me. “Another doctor told my mother it was all in my head and that she needed to take me to a psychiatrist.”
Birk struggled for another day and a half in the hospital before someone finally figured out what was going on: She had acute exertional compartment syndrome, a rare condition in which pressure builds up in the muscular portion of the arm or the leg. As soon as they measured the pressure in her leg, she was taken for emergency surgery. If the diagnosis had been delayed even a few more hours, her surgeons told her, they would have had to chop her leg off.
While a diagnosis saved her limb, Birk became something I wish on none of my patients: the medically interesting case. Doctors were constantly filing in and out of her room to look at her leg. “They hushed me when I spoke so that they could talk to one another as they pointed to the exposed tendon, palpated the lump of leftover muscle, and poked their pocket scalpels into the necrotic flesh,” she wrote in an autoethnography.
This was just the start of Birk’s journey with pain. She’s now in her mid-forties. After her initial operation, she was in the hospital for six weeks and was still using a wheelchair at the time of her discharge; she would walk with crutches for four years. The wound on her leg was 10 inches long and four inches wide. Then her left leg developed compartment syndrome as well. She’s had a total of 15 surgeries, and even though the original “organic cause” of her pain apparently resolved, she has continued to be in distress.
When I spoke to her, it was apparent that the words her surgeons voiced hurt her even more than the incisions they made. “As a young girl, I wasn’t taken seriously,” she said. “I was often told I was being hysterical—that I was making it worse by paying attention to it.”
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Birk’s erasure was relentless: “I would tell doctors to not touch this area, but they disregarded it and hurt me.”
Yet because Birk’s pain kept returning, she had no choice but to keep going back to the very clinicians who abused her. “The people I was going back to, I was invisible to them,” she told me. “It was like gaslighting—I began to doubt my own thoughts. Maybe they are right and I am making this up. I internalized it and I am still working to undo that.”
As heartbreaking as it is, Birk’s tale is not exceptional. It is how modern medicine treats anything it doesn’t comprehend. If doctors didn’t learn about it in medical school or cannot make it go away, it must not be real.
Birk learned to negotiate the hegemonic structures that had come to govern her life. For the medical system, it is not enough for you to be sick; you have to act the part. “Over time I became practiced in what details to give when, and how long to talk when I walked into a room and met a physician for the first time,” Birk said.
Birk is a proud person who never wanted to be obviously disabled by her pain, and yet she found that unless she playacted as she was expected to, people would not take her seriously. She didn’t want to walk with a cane but would be heckled for parking in a handicapped spot when she tried to brave it out without one. This core social function of chronic pain put her in a bind: Underperform and you aren’t taken seriously; overperform and you become suspect.
Eventually, Birk took control of her story, something doctors are loathe to give away. The average American doctor takes 12 seconds to interrupt a patient as they begin to tell their tale. Everything that follows is on the doctor’s terms, in their chosen syntax. And Birk, as a white, highly educated, upper-middle-class person, has enough insight to know things could have been worse, writing that her “advanced social status” could blind her “to the many ways in which race and class can compound and complicate the effects of disability.”
Patients with chronic pain—unaligned with an algorithmic medical approach that prizes disorders it can visualize, characterize, and pulverize—have become pariahs. They exist in a purgatory between physical and psychological disease. This is the main reason why they experience the fifth and final major struggle identified by the NIHR research: the struggle for legitimacy. The yearning for legitimacy can be all-consuming. It can annihilate a person’s reality and, given time, eat into their entire surrounding world.
Reversing these wrongs will need nothing less than a fundamental reorganization of how doctors define which symptoms matter and which don’t. It will require medicine to move past the mind-body dichotomy first introduced by Descartes and recognize that what matters is not whether a symptom lines up with a zit on a CAT scan or if it turns a lab value red. What matters most is what a person feels, and that should always be the pole that guides their experience. A diagnosis can open the door to certain specific treatments but should never be a necessity for people to be treated with respect and compassion. A medical approach rooted in kindness might not just make the chronic pain patient’s journey less arduous. It might well be the key to creating a just and equitable health system and society.
Excerpted from The Song of Our Scars: The Untold Story of Pain by Haider Warraich. Copyright © 2022. Available from Basic Books, an imprint of Hachette Book Group, Inc.
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