In a New York Times Health essay from 2008 called “The Tyranny of Diagnosis,” physician Pauline Chen argues, “As comforting as it may be to have a real diagnosis, those diagnoses also carry powerful assumptions about our bodies and our place in the world, which can in turn influence our health care.” I like this essay because it gets across the high stakes of finding a diagnosis – any diagnosis, but especially a correct and actionable diagnosis – for doctors, and how a doctor’s diagnosis can impact patients.
I’ve taught this essay in college courses a couple of times, and students really enjoy hearing from a doctor about how there are both positives and negatives to identifying a medical condition. In short, Chen argues that making a diagnosis can be positive because it gives a doctor some clues about what treatments to use. The negative side is that once they have the “answer” they might stick to traditional treatments and stop thinking outside the box.
In my research on allergy, especially the parts of my research that focus on food allergy, I have also learned a lot about the other side: the side of the person being diagnosed (the “patient”). There are absolutely times when getting a diagnosis – especially an incorrect or vague diagnosis – can be disempowering. It can be downright harmful when it delays effective treatment. But it can also provide an identity and give people a reason to work together to find ways to cope with their condition and advocate for better health care and research.
It’s been really striking to me in my research how much people are motivated to connect with each other around the food allergy diagnosis. Parents of kids with food allergies in particular seem eager to seek each other out in support groups, online communities, and at conferences like FARE’s (now yearly) conference. Advocacy projects, like the push for stock epinephrine in schools, can gain momentum when groups of people affected by a medical condition share their stories with each other and realize there’s something they can do to make all their lives healthier, easier, and safer.
While people can and do seek each other out purely for support purposes – to feel like they’re less alone with their diagnosis, for example – it’s also unfortunately true that people often band together because their condition is neglected or poorly understood by medical providers. I see awareness campaigns about the importance of stocking epinephrine in emergency facilities like ambulances and emergency rooms as one effort that has emerged out of frustration and fear rather than out of a desire for social connection.
Of course, there’s a fancy social science word for this: biosociality. In an essay in his book Essays on the Anthropology of Reason, Paul Rabinow described “biosociality” as the “formation of new group and individual identities and practices arising out of” precise genetic diagnostic tests for genetic diseases. I would argue that it’s worthwhile to think about “group and individual identities” around non-genetic (or not-100%-clearly-genetic) conditions like food allergy through his lens, too. He goes on to say that “[t]hese groups will have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene in, and “understand” their fate.” I think he’s hit the nail on the head with summarizing the kind of multifaceted mobilization I see around food allergy in my research.
So in short, diagnosis is complicated. It can help clinical care, but it can also limit it. While people might feel alone when they receive a new diagnosis, it might also motivate them to reach out to others to share their experiences. Sharing experiences can be comforting on its own, or it can motivate other social and political actions.
Lately, I’ve been thinking about diagnosis as a “gateway” into living with a medical condition: it’s an open door that can lead down many different paths, depending on the individual’s situation. Testing (a topic I’ve discussed before in two parts) is part of the process of opening this door, but it doesn’t necessarily determine an individual’s end destination. What doors has allergy diagnosis opened for you?