The rigid health care system in the US often leaves pain patients worse off. It's time for clinicians to recenter respect and compassion.
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.
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.
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.
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.
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