Drawing on ethnographic fieldwork in a pediatric pain clinic in California, Mara Buchbinder explores how clinicians, adolescent patients, and their families make sense of puzzling symptoms and work to alleviate pain. Through careful attention to the language of pain—including narratives, conversations, models, and metaphors—and detailed analysis of how young pain sufferers make meaning through interactions with others, her book reveals that however private pain may be, making sense of it is profoundly social.
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All in Your Head
Making Sense of Pediatric Pain
By Mara Buchbinder
UNIVERSITY OF CALIFORNIA PRESSCopyright © 2015 The Regents of the University of California
All rights reserved.
The Bottom of the Funnel
But the greatest thing by far is to have a command of metaphor. This alone cannot be imparted by another; it is the mark of genius, for to make good metaphors implies an eye for resemblances.
If an electrical engineer could look at your neurological wiring, he would see where the problem is.
Suppose that a physician had decided that your pain was all in your head. What, exactly, would that mean? When we label pain as "all in your head," beyond merely specifying a physical location where pain is thought to reside, we also draw on the head as a prevailing metaphor for psychological phenomena. In the U.S. context, this metaphor is persuasive because it draws on widely held cultural models proposing that illnesses are either mental or physical. Because the mind is the province of the imagination, "all in your head" may also suggest that the pain is made up or "unreal," the invention of a self-defeating mind, or, worse, the fabrication of a malingerer. "All in your head" is thus a powerful metaphor for illness because of the multiple meanings that it crystallizes and collapses.
In this chapter, I examine the metaphors that clinicians use to explain pain to adolescents and families. In her book Illness as Metaphor, the literary critic Susan Sontag famously rejects the notion that serious illness can be understood in terms of metaphor. For Sontag, metaphors stigmatize cancer sufferers by cloaking a terrible disease in an aesthetic veil, which, as it lends meaning, distorts. Sontag pleaded for society to strip diseases of this symbolic content and understand them purely in terms of their biomedical meanings. What Sontag's point misses, however, and what I seek to illustrate here, is that metaphors—aesthetic or otherwise—are endemic to biomedical practice itself and foundational to the ways in which practitioners understand and explain bodily processes.
Here, I highlight in particular the pragmatic function that metaphors serve within clinical explanations. Drawing on interviews I conducted with clinicians on the West Clinic team, as well as other pediatric pain practitioners, I examine a set of metaphors used to present chronic pain as a problem of neural circuitry. Characterizing pain in this way addresses two persistent dilemmas that plague contemporary biomedical understandings of chronic pain: an ambivalent stance toward the role of individual psychology and the elusiveness of concrete causes. Metaphors for neural circuitry reconfigure the relationship between material explanations and biomedical legitimacy by replacing the fruitless search for mechanical dysfunction with a more diffuse model of nerve-signaling difficulties. Neural metaphors thus work to transform intractable pain from an abstract, senseless phenomenon to one that is meaningful, clear, and concrete. In doing so, they bolster the credibility of adolescent chronic pain sufferers, whose legitimacy and moral standing are routinely called into question when biomedical explanations fail.
THE LONG ROAD THERE
Before turning to these metaphors, it is important to say a few words about how families make their way to pediatric pain clinics. Chronic pain patients, including children and adolescents, are often referred to specialized treatment centers months or even years into their diagnostic journey, having seen multiple specialists and undergone scores of inconclusive tests, only to be told that there is nothing wrong, or, worse, that the pain is all in their heads. As Mark Siegel put it the first time we met: "In the past sixty-two weeks I've seen eleven doctors, nine of whom think I'm insane." Dr. Novak referred to the West Clinic as "the bottom of the funnel" because, as Nina Herrera, the clinical coordinator, explained it, "They've been to every pediatric subspecialty clinic; every test has been negative; everything's been cleared."
Most West Clinic patients found their way to the clinic after consulting at least three specialists—typically, gastroenterologists, neurologists, orthopedists, and rheumatologists. To families on a prolonged diagnostic odyssey, testing seems to offer a beacon of hope, a pathway out of uncertainty, yet in the case of chronic pain, it repeatedly fails to produce the desired result. One mother referred to this thwarted quest as a journey through the "Bermuda Triangle" of pain, a metaphor that captures the aimlessness and sense of abandonment that many families experience as they search for help. Some disappear into the medical system, feeling rudderless and bewildered.
Mark Siegel's pathway to the West Clinic exemplifies the circuitous routes that many families take before finding their way to pediatric pain clinics. Mark lived in an affluent community with his mother, Julie, a pharmaceutical sales representative, his father Micah, who worked in marketing, and his younger brother, Noah. Mark's pain began after a boogie-boarding accident in August 2007, when he was thirteen, that cracked the growth plate in his left elbow. When the pain did not let up, Julie took Mark to an orthopedist, who diagnosed the fracture and put the arm in a cast. This was the third break to Mark's left arm: when he was six, he had fallen jumping off a jungle gym at school and broken the ulna and radius, and six months later, he had tripped and broken the same arm again. This history was significant because chronic regional pain syndrome (CRPS), the diagnosis that Mark eventually received, often occurs at the site of repeat injuries.
From the beginning of the latest injury, Mark was extremely uncomfortable. During the first nine weeks, the orthopedist changed the cast several times due to swelling, until he finally removed it for good. After that, Mark received physical therapy three times a week for ten weeks, but he remained highly sensitive to pain, and his physical therapist came to suspect that the arm had not entirely healed. However, when Mark returned to the orthopedist for further X-rays, no fractures were identified. The orthopedist encouraged the Siegels to "toughen up" on Mark, speculating that the pain would fade as he became more active. By February, his arm had still not improved, and he was complaining of pain more often. Julie brought him to two physiatrists, who recommended laser therapy, which Mark underwent twice weekly for five months to no avail.
Mark returned to his pediatrician, who referred him to a neurologist, Dr. Carmine, who finally diagnosed Mark with CRPS. Dr. Carmine ordered an MRI to make sure that Mark had not sustained any nerve damage and prescribed Neurontin, a drug initially developed to treat seizure disorders that is now widely used "off-label" to relieve neuropathic pain. On Neurontin, Mark felt "loopy" but got no relief. Lyrica, another neuropathic pain agent originally developed for treatment of epilepsy, likewise offered no relief. Nearly a year after Mark's injury, he returned to Dr. Carmine for a third time. Now, because the medication trials had failed, she decided that he might be an appropriate candidate for a sympathetic nerve block. The first nerve block was unsuccessful, and although the radiologist had suggested that it might require several attempts, Mark was reluctant to have a needle inserted into his neck again.
Meanwhile, during his recovery from the nerve block, Mark's blood pressure soared up to 168/82. Julie brought him back to the pediatrician, who sent them to a cardiologist. The cardiologist ordered an EKG, which was normal, and an echocardiogram, which showed thickening on the left side of Mark's heart. The cardiologist then referred Mark to a nephrologist to rule out renal artery stenosis, a possible cause of high blood pressure in children. Mark underwent several weeks of testing, but everything came back negative. However, because his blood pressure remained worrisomely high, he started taking a low dose of Enalapril, an ACE inhibitor, to lower his blood pressure. Julie and Mark were both convinced that his high blood pressure was related to his pain. Reflecting on this time, Mark said, "At the year mark it made me angry because my doctors have been idiots up to that point, not knowing what the heck is wrong with me. That a city with one million people doesn't have a doctor that can treat this is beyond me." Nevertheless, he believed that his best hope for recovery lay with medical doctors—he had tried alternative treatments such as acupuncture, herbs, and moxa with no success.
When I met the Siegel family several days before Mark's first West Clinic appointment, they had begun to research pain programs and physicians in other parts of the country, afraid that they might have exhausted treatment options in their area. They told me about future plans to travel to a clinic in Northern California and to the Mayo Clinic in Minnesota, which they had put on hold when they found out about the West Clinic. In my experience, such travel was not unusual; several families traveled from out of state and stayed several weeks to have their child treated in the West Clinic. Julie reported that Mark was quite involved in the research process: "He gets on the computer himself, looking for pain specialists, and he's like, 'I gotta find someone that'll get me out of this pain.'"
In the face of Mark's increasing discouragement, Julie stressed the importance of his treatment. She said, "And he knows we keep trying and we keep calling doctors and we keep- you know, we're not giving up. And that's what we do, is we reassure him that we're not giving up. We're gonna try to get him—find him someone to get him the help he needs." For the Siegels, a big component of "not giving up" was financial: Julie reported that they had spent $4,300 between August and October alone. Yet Julie's investment was more than just monetary. She spent countless hours on the phone with physicians and pharmaceutical industry colleagues trying to get the best care for Mark. "I'm on the phone with doctors every day! Seeing what I can do. I'm on the Internet. I have not given up," she told me.
For Mark and his family, the West Clinic represented, if not the absolute "end of the road," certainly one of the last stops on a winding journey that included a narrowing range of possible destinations. However, while Dr. Novak's funnel metaphor might create the impression that all children and adolescents with chronic pain will eventually make it to a place like the West Clinic if they spin around long enough, this is not quite accurate. As with most health-care resources in the United States, access to tertiary care medical services such as specialized pediatric pain clinics is stratified according to families' insurance status and ability to pay. The story of fifteen-year-old Crystal Martinez, the first patient that I enrolled in my study, is quite telling in this regard. Although I recruited Crystal after her first appointment in the West Clinic was scheduled, she never actually became a clinic patient, because her Medi-Cal health insurance would not cover her treatment.
Crystal's mother, Lucinda, a Guatemalan immigrant and single mother, was exceptionally devoted to providing her two U.S.-born daughters with the best available educational, extracurricular, and travel opportunities. The three lived in a two-bedroom apartment with Lucinda's sister and nephew in a part of town known for high crime rates, where the buildings were more weathered than in the Siegel family's community. A year and a half before we met, Crystal had come home from a school trip to Guatemala with body aches and a fever. When the fever spiked on the third day after her arrival back, Lucinda rushed her to the local children's hospital, where she was diagnosed with dengue fever and salmonella. After several months, Crystal had seen an infectious disease specialist and made two subsequent emergency room visits, but the body aches and abdominal pain remained. "They were not helping her," Lucinda recalled. "Whenever we go there it was the same thing. You know, Tylenol or [other] painkillers. I think they give her something really strong for the pain. But I don't want to give her that, because then she will get addicted to it."
At this point, Crystal's pediatrician referred her to a gastroenterologist in the same children's hospital, but the first available appointment was three months away. In the meantime, the family for whom Lucinda had worked since Crystal was six months old, as a nanny and then a housekeeper, suggested that Lucinda take Crystal to the emergency room at a different hospital across town and request that she see a gastroenterologist. Once there, Crystal was referred to a pediatric gastroenterologist, who eventually referred her to the West Clinic, located in the same hospital, when she ran out of treatment ideas.
The gastroenterologist prescribed Xifaxan, a short-course antibiotic that was not covered by Crystal's insurance, for which Lucinda paid $255 out of pocket. "We talked to [the gastroenterologist] about sending some forms but then in those days she went on vacation," Lucinda explained. "And the, uh, doctor that was ... covering for her, ah, they didn't got the forms, and [when] they did got the forms, they send it to the insurance, they got lost. So whatever happens it just took a while. At the end, I never got any response from anybody, insurance or the doctor, so I just went in and paid for myself." I found Lucinda's experience particularly vexing because I had taken Xifaxan myself about eight months prior, and my own doctor, knowing that I was in graduate school, had told me that if my insurance would not pay for it, she would give me free samples. Lucinda was not offered these, and as a struggling single mother, the cost hit her hard.
Beyond the importance of financial resources, Lucinda and Crystal's experience also highlights the important role of what the sociologist Janet Shim calls cultural health capital, tacit or deliberate cognitive, behavioral, or sociocultural resources that predispose patients to optimal health-care encounters. The suggestion by Lucinda's employers that she take Crystal to a different, more prominent hospital marked a critical turning point in Crystal's therapeutic trajectory. For working-class, nonnative-English-speaking immigrants like Lucinda, the cultural health capital necessary to identify appropriate doctors and therapeutic pathways beyond ordinary pediatric care can be far out of reach. Prior to this point, Lucinda told me that, unaware of how to go about finding a suitable doctor in the United States, she had looked for a doctor for Crystal by dialing telephone numbers that she found in the Yellow Pages under "gastroenterologist."
Lucinda recalled this strategy as the most frustrating aspect of Crystal's medical journey:
Find a doctor. Find a GI. That was so upsetting. I even went to the Yellow Pages and looked myself and tried to see a GI. And they said, "Sorry we can't take you because we only take from eighteen and up. Sorry we can't take you." This is so frustrating. We find one that was gonna take us but it was, the appointment was for two months, and the visit is between 400 and up or 200 and up. Expensive. Which, I, like I said, you know, I don't mind the money you know, if it is helping her or is gonna help her, I will pay for the visit. 'Cause they say, "What plan do you have?" "Well I have this HMO, whatever." And they say, "Oh no, we don't take that." I say, you know, "It doesn't matter. I pay for the visit." And, it's start from—I think they said from 250 and up.
Excerpted from All in Your Head by Mara Buchbinder. Copyright © 2015 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Table of ContentsAcknowledgments
List of Acronyms and Initialisms
1. The Bottom of the Funnel
2. The Smart Clinic
3. Sticky Brains
4. Treating the Family
5. Locating Pain in Societal Stress