All In Your Head: Making Sense of Pediatric Pain

by Mara Buchbinder

University of California Press, 2015, 256 pages

 

Pain has a famously intangible quality. To paraphrase Elaine Scarry, for the person in pain, “having pain” can be wholly consuming and experienced as concrete reality. But for all its “there-ness,” pain is difficult to pin down, measure and describe. This can be an isolating and lonely experience, made worse by the pervasive stigma that plagues those who have invisible disorders. All of which produces challenges for doctors asked to provide explanations for pain. Patients desperately need these explanations—they provide some order to what otherwise might be inchoate or disparate symptoms. Explanations suggest cause, dictate treatment, and attempt to prognosticate the future. And they are also infused with meaning, imbuing patients with judgments about their moral character. How responsible are patients for their symptoms? How deserving are they of their treatment?

The social production and cultural meaning of explanation takes center stage in Buchbinder’s beautifully written and provocative ethnography of an adolescent pain center. Buchbinder starts with premise that pain is not a wholly individual experience, but one produced in social contexts. Likewise, she argues, explanations for pain are never transparent descriptions of the body, but social creations—performances that provide legitimation for patients and practitioners, or rhetorical devices that serve to produce trust in doctor-patient interactions.

Buchbinder’s ethnography follows a variety of adolescent patients who are experiencing devastating, disabling pain as they receive treatment at “West Clinic,” an adolescent pain clinic. These patients live at home with their parents, and most have dropped out of school. West Clinic is described as their last, best hope to find relief. West Clinic, Buchbinder explains, has some distinctive features: it exists in a diverse location, but its diffuse structure, cash-only policies, and time-consuming treatment regimens effectively exclude all but the most privileged patients. The clinic also uses explanatory models that diverge from those in use elsewhere in pediatric pain medicine, which is important to keep in mind when considering potential generalizability. But the strength of Buchbinder’s book isn’t in the particulars of the specific explanations that she observes—it’s in her overarching reinterpretation of how we understand the deployment and uptake of explanations in clinical medicine.

Take, for example, the case of Michael Harris, who developed severe gastrointestinal pain and depression after an emotionally difficult year of school. Unlike many pain patients, Michael and his family entered West Clinic already thinking of his symptoms as psychological. However, the clinic’s primary physician, Dr. Novak worked diligently to change their explanation for the pain to a neurobiological paradigm. After diagnosing Michael with irritable bowel syndrome (IBS), which she described as “real,” she explained that this often happened with “really smart kids” whose brains and nervous systems make “faster connections.” But, she explained, this “neural glitch” could work in Michael’s favor, as the fact that he was a good, intelligent student would make it easier for him to reteach his body how to work.

Buchbinder describes Novak’s technique as part of a “personhood diagnostics” employed by West Clinic, in which a neurobiological framework is extended to include moral characteristics such as creativity, intelligence, and sensitivity. She explains that this approach serves to engage patients in a variety of obligations, including attending school, coping with pain, and adhering to an onerous treatment protocol, but it mostly manages to do so in a way that doesn’t automatically devolve into a mind/body dualism that blames patients for their symptoms.

Explanations shift, however, when clinicians talk amongst themselves (although sometimes these thoughts were shared with patients). Certain patients, especially those not progressing well in the program, get labeled as having features of “pervasive development disorder” (PDD)—a diagnosis no longer included in the Diagnostic and Statistical Manual—including concrete thinking, an interest in details and hyper-attentiveness. These patients were spoken about as having “sticky neurons” that resisted West Clinic’s treatments. Although his family was never told, Michael was described as “PDD-ish.”

Clinicians seemed to label patients (and even family members) of PDD quite liberally and, though Buchbinder didn’t say it as explicitly as I would have liked, often problematically. As an ethnographer who studies migraine, I was often deeply troubled by clinicians’ suggestive use of PDD. I am still angry about a young woman with migraine who was labeled with PDD simply because she requested for the lights to be turned down in an examination room. Light sensitivity is a signature symptom of migraine! The clinic should have its lights turned down in anticipation of these symptoms.

At other times and in other contexts, clinicians drew on psychodynamic arguments, laying blame on family dynamics, and pointing their finger towards poor parenting, which could take the form of everything from inadequate care to too much care or “enmeshment.” In interviews, health care providers would provide more sociological explanations, arguing that adolescents’ bodies were simply screaming out in resistance to the stress of overscheduled modern-day lives and expectations.

The explanations, themselves, are old bogeymen, some dating back centuries. Physicians have long attributed pain to sensitive nervous systems, intelligence, modern societies, and dysfunctional families. What Buchbinder does well is demonstrate how these explanations coexist, overlap, sometimes contradict each other but often work together, a feat she accomplishes by observing all the workings of the clinic, from doctor-patient interactions to backroom “team” meetings to patients’ lives at home. Some of the explanations work well and are taken up easily by patients. Some don’t. But their multiplicity casts a long shadow on studies that only capture actors’ explanations using one data point (for example, interviews). Explanations are used performatively and what is said in one setting may not be the same as what is said in another.

Buchbinder’s fascinating discussion of clinicians’ “neurofication” of subjectivity will interest a wide set of readers. Embedding personal and moral characteristics like intelligence, hard-work, and sensitivity in the brain can go a long way towards legitimating the symptoms of a person in pain. However, embedding moral characteristics in the brain can also reify these tendencies in problematic ways.

“All in Your Head” is an excellent addition to scholarship on health and illness and, particularly, on pain. It’s a must-read intervention in the anthropology and sociology of diagnosis. This is also the kind of careful and provocative text that I love to assign in classes. Buchbinder’s ethnography not only contributes substantially to our understanding of the social uses of explanations, it also exposes how the cultural meaning of these explanations depends on the language that is used and the social and cultural context in which it is delivered.

 

Joanna Kempner is an associate professor in the Department of Sociology at Rutgers University. She works at the intersections of medicine, science, politics, gender and the body. Her award-winning book, Not Tonight: Migraine and the Politics of Gender and Health, examines the gendered social values embedded in the way we talk about, understand, and make policies for people in pain.

References

Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press, 1985.