What Can Food Allergy Experts (Including Parents) Teach the Rest of Us About Medical Care?

By Danya Glabau

One spring day, I was watching the diagnostic process in action. The patient, a young woman, was sitting in a small, windowless exam room. Her forearms were covered in rows of skin pricks from testing, and some of them had blown up into wheals as large as an inch across. Her husband sat with her, chatting to pass the time as the allergist and his nurse bounced from patient to patient while her skin reactions developed. The skin test indicated that she had food allergies; the reactions were definitive and corroborated her history, so the doctor deemed follow-up blood testing unnecessary. Before she left the room, the doctor talked her through the symptoms of anaphylaxis, including trouble breathing, hives, and a feeling of impending doom. He taught her how to use an epinephrine auto-injector using a trainer and wrote her a prescription for the real thing. He then popped out of the room and returned from his office moments later, handing a folder bearing the logo of a food allergy advocacy organization to the patient. Inside were pamphlets on food allergy resources, fact sheets on avoiding allergens, and contact information for organizations that could offer more support. They chatted for a few more minutes; her husband joked that cooking at home more would help him lose weight, too, hinting at the big changes that were to come in their household routines. The entire exchange took only a few minutes. It felt smooth, efficient, well-choreographed.

I had a feeling this was only the start of this patient’s journey. In the dozens of interviews I’ve conducted as part of my research on food allergies, allergic adults and parents of kids with food allergies have told me about the frustration and helplessness they feel after they walk out of the doctor’s office with a food allergy diagnosis. What can they eat for lunch? What groceries can they buy? Who do they turn to if they do have a reaction? This doctor already went above and beyond by having literature on hand to give to patients. Most people are simply advised to avoid the foods they are allergic to and come back if new medical problems arise. It’s up to each family or individual to figure out how to do that.

This exchange reminds me of the most important thing I’ve learned from my research so far is this: living with food allergies requires skills and knowledge beyond that possessed by allergists and nurses. People with food allergies need to become experts at living with their condition. But what does it take to be a food allergy expert? What skills do people learn, how do they learn them, and what does it mean for their lives? That’s one of the stories I’m trying to tell as my research progresses.

Defining expertise has long been a focus of my scholarly field, Science and Technology Studies (STS). Early STS scholars went into laboratories to observe scientists for months or years as they did their work. They found that being a scientific “expert” requires more than just knowing the right facts and conforming to a set of professional norms. It requires mastering an array of other skills: documenting experiments, networking, and strategically demonstrating and communicating research findings. In the 1990s, STS researchers studying conflicts between scientists and the public realized that some outside the lab and supporting institutions could gain the attention and respect of trained scientists. They were granted the designation “lay experts.” Successful lay experts, it was concluded, were those individuals who learned how to play the science game as well as scientists without formal training. Medical crises in particular, such as the advent of AIDS in New York City in the 1980s, revealed that lay experts sometimes knew more about the science and policies surrounding an issue than the scientists and bureaucrats who were making the decisions. In such cases, lay experts can play a large role in shaping, and often accelerating, scientific research. I see food allergic people who become experts at managing their condition as similar to lay experts who engage in scientific controversies. However, there are some important differences, too.

Three Kinds of Food Allergy Experts

I’ve been thinking about the food allergy world as a landscape where three kinds of expertise work together and often overlap.

First, there are the scientific experts. In labs and research centers, professional, technically skilled, formally trained experts do research and provide top-notch medical care for people with food allergies. Sometimes, research into the basic mechanisms of food allergy generates new ideas for clinical therapies such as the newly announced search for a monoclonal antibody to alter mast cells at the University of Cincinnati. Other times, researchers are testing how to improve or combine existing treatments, like combining Xolair with oral immunotherapy. Their work often translates directly into medical care, although it also may postpone or foreclose other ideas, such as an experiment combining gene therapy and immunotherapy by Dr. Xiu-Min Li before undertaking her TCM research.

Equally important are people and organizations advocating for the cause of food allergy. FARE is the largest of these: formed by combining two pioneering groups, they bring together people with legislative and communications experience, fundraising know-how, personal connections to food allergy, and scientific training. Beyond FARE, there are many grassroots organizations and social media groups. Kids with Food Allergies plays a similar role. Additionally, their monthly webinar series brings in other experts, like nurses, doctors and lawyers specializing in disability issues, to supplement their own expertise. FAACT is a newer example.

Individuals who do advocacy work without affiliation to large organizations are typically inspired by their personal experience and find ways to use their non-scientific professional skills to help others with food allergies. Many parents that I’ve spoken with are also trained lawyers, scientists, and writers, and they use those skills to spread awareness, raise money, and shape policies at local, state, and federal levels of government. Starting from a sense of personal urgency when the person or their child suddenly presents symptoms of a condition they know nothing about, these “hybrid experts” – experts in both food allergy and in an unrelated profession that they draw on to tackle food allergies – can become important movers and shakers. Allergic Living Magazine is one such project that is now a unique platform for bringing together professional and lay expertise.

The third kind of expertise I have noticed is something I am calling “domestic expertise.” As I discussed in a recent post on my own blog, recognizing the routine work of running a home, like cooking and cleaning, as labor deserving of compensation or recognition doesn’t come easily to most of us. But these are time-consuming tasks that require skill and practice. People who need to keep allergens out of the home must become even more specialized. Avoiding allergens requires a great deal of knowledge about food processing and preparation and about the biological basis of allergic sensitivity. It’s important to be able to predict cross-reactivity between foods, for example. These are potentially life-saving skills: since there is no easily accessible treatment to reverse or cure food allergies at this time, keeping allergens out of the home and out of the body is the only way to “treat” the condition. Without domestic expertise – and channels where people can learn the needed skills, like informative websites and blogs, doctors who are generous with their time, and support groups – people with food allergies would not be able to live and eat safely.

The first and second kinds of expertise have been well documented in a variety of health contexts by social scientists. The third one, however, has not been looked at in quite this way, to my knowledge. It’s also the piece I am most interested in.

The Bigger Picture: Inclusion and Responsibility for Others

So far, I’ve noticed two themes emerging from how people talk about domestic expertise. First, inclusion, and domestic expertise is one way to make inclusion possible. Ensuring that people with food allergies – especially kids with food allergies – can be included in social rituals is very important to everyone with a stake in food allergy treatment and research. Since food is so central to many rituals—perhaps too central–this can mean a major rethinking of what it means to celebrate a holiday or a birthday. Sometimes this means preparing allergy-friendly foods, other times it could mean excluding eating in favor of other activities. Second, including food-allergic people often requires enlisting others who will share responsibility for their well-being. This happens through education – or, put another way, through “domestic experts” sharing their expertise with other community members who may be food allergy novices, like teachers and chefs. I see mothers who teach babysitters and teachers how to use an epinephrine auto-injector or gourmands who teach servers and chefs about cross-reactivity as examples of this. It also means in many cases learning the intricacies of the Americans with Disabilities Act to negotiate accommodations from schools to safeguard children.

Lately I’ve been wondering, what does all this mean for American society? I think I’m figuring out an answer. My study of food allergy suggests that it’s important for social scientists and policy makers to think about more than just clinical data when it comes to putting policies in place to safeguard people with allergies and with other chronic medical conditions. It’s also important to think through who is – as well as who could be and who ought to be – responsible for taking care of people with medical conditions that affect their inclusion in activities that the rest of us take for granted, whether it’s a birthday party or getting an education.

I think inclusion is a good goal, and sharing responsibility for care is ethically appropriate in many situations. I admire people who speak out publicly about food allergy for bringing these issues to the forefront of important national conversations about medical care. I hope that the concerns of the food allergy world and the mechanisms developed to support its interests can have a positive impact upon medical care, not only for food allergic kids and adults, but also for all who need a bit of help managing other chronic medical conditions.

Danya Glabau is a PhD Candidate at Cornell University in the Department of Science and Technology Studies (STS), studying the “culture” of food allergies in the United States using tools from medical anthropology. Her research is inspired by her own journey with developing allergies as an adult. She hopes to continue writing about her work for both popular and scholarly audiences and, as a college instructor, teaching future doctors about the interdependencies between medical science and society. You can follow her on twitter at @AllergyPhD or visit her blog at http://allergyandthecity.blogspot.com/.