|Image from Amazon.com|
One of the very first pieces of scholarly writing my summer students read was the first few pages of the introduction to Arthur Kleinman’s book, The Illness Narratives. Rereading this introductory essay, which is a staple on course syllabi in sociology, anthropology, and history, I’m struck again by how simple, yet important, his argument is. Kleinman’s central concern is to draw attention to the power of individuals’ stories to illuminate the meaning of sickness in a variety of cultural settings. Given my observations about some of the strengths of historical analysis – historians like to allow their actors’ words and activities to “speak for themselves” as much as possible – it’s no surprise that this reading kicked off a history of medicine course!
On page 5, he writes:
Illness complaints are what patients and their families bring to the practitioner… Disease, however, is what practitioners have been trained to see through the theoretical lenses of their particular form of practice. That is to say the practitioner reconfigures the patient’s and family’s illness problems as narrow technical issues, disease problems.
I think this is the most important passage in the essay. He lays it all out here: illness is the word he uses to refer to the patient’s (and the patient’s family’s) experience of sickness, while disease is the medical professional’s understanding of that experience as a result of biological dysfunction. He’s upset by the mismatched understandings of sickness story within the doctor-patient dyad. Since the doctor’s story is the one that typically wins – it’s the one that forms the basis for treatment and insurance reimbursements, after all – he’s worried that the everyday social struggles associated with the patient’s illness too often get forgotten. Fixing the biological disease often (though less often nowadays than when he wrote this in 1988, I suspect) takes precedence over fixing the patient’s total well being.
Of course, Kleinman is taking a strong position here. By no means, though, would he argue that the medical perspective has no value. Kleinman is a practicing physician as well as a trained anthropologist. He brings his clinical know-how to his anthropological writing, which is part of the appeal of his work for me. Throughout the book, he suggests that doctors could do a better job of taking patient experience into account, especially when it comes to difficult-to-measure problems like pain. He does this through exploring illness narratives, stories from the patients’ perspectives about what happens when they get sick.
It was nice to be reminded of this essay and the book that it comes from at this point in my research. I think a lot of people in the food allergy community would agree with Kleinman’s observation that the best way to improve one’s illness experience sometimes doesn’t match the remedies for the underlying disease that are considered scientifically efficacious.
To take an example from my conversationss with general allergists, some allergists that I’ve talked to swear by allergy shots as a reasonably effective remedy for environmental allergies. Statistically, the shots improve symptoms for many people. Yet it is a huge challenge for most people to show up for weekly shots at their doctor’s office. Their experience of environmental allergies as an illness that shows up for a couple months each spring may not seem to warrant such a drastic treatment for the underlying biological disease.
With food allergies, the mismatch between the disease and the illness is even more stark. The experience of living with food allergies can be difficult to fully address in a fifteen minute doctor’s appointment. While the doctor’s job is to run tests to find out what the patient is allergic to and then report these results to them, the person who has been diagnosed leaves the office facing the challenge of re-learning how to cook, travel, go to school, participate in family rituals, and eat at restaurants. For help with the illness – the everyday experience – there are blogs, support groups, informative Twitter feeds, and conferences aimed at non-scientists. Information about the biological disease is typically only one piece of the illness puzzle that people with food allergies must put together largely on their own.