According to recent studies, food allergy affects one in 13 children and one in 10 adults in the U.S. It is a disease of increasing prevalence with no comprehensive treatment and no cure. A tiny amount of food allergen can cause a life-threatening anaphylactic reaction. Medical recommendations include carrying epinephrine at all times and strictly avoiding all potential allergens. In addition, any allergic reaction other than the mildest must be treated as potentially life-threatening anaphylaxis: self-inject with epinephrine, call 911, and take an ambulance to the emergency room.
People with a food allergy and parents of food allergic children go to great lengths to prevent allergic reactions. To prevent contact with their allergen, they seek allergy accommodations in many places each day including restaurants, friends’ kitchens, catering halls, airplanes, and school cafeterias. Food allergic people and families might request a specially prepared meal, an ingredient substitution, or that passengers on an airplane refrain from eating nuts. They request that chefs and servers in homes and businesses take great care in preparing their food.
Despite the seriousness of this disease, food allergy social media is replete with posts from food allergic people and parents filled with shock, sadness, and anger over their or their child’s food allergy being dismissed, disregarded, or ignored by family and friends who don’t “get it.” They ask, “Can I ever go there again?” “Am I overreacting?” “Why do they not get it?” The people in question are often close relatives, friends, and even healthcare providers. People contemplate distancing or severing ties because of food allergy minimization. There are few medical conditions which so threaten bonds with family and friends.
Food allergies can begin at birth and take lives. In the U.S., food allergy prevalence among children has increased by 50% in recent years. Every year 200,000 people are seen at the ER for food allergic reactions. While the overall risk of death is low, teenagers and young adults are most likely to die from food allergy. Food allergy affects all walks of life, of every race, all over the world. Why then, is its severity so hard to grasp? Why would family members, teachers, even nurses and doctors minimize or reject the reality of a verified medical condition? As a psychologist and the mom of a food allergic daughter, I sat down to consider this frustrating situation – why is the reality of food allergy so unthinkable to some?
In this and my next post, I explore possible explanations for these minimizing reactions.. In an upcoming post, I’ll discuss people’s intimate relationship with food. First, I examine how perceptions of food allergy are impacted by the imperfect and error-prone ways our brains process information.
To conserve energy, our brains do a lot of thinking in shorthand, which often causes errors. food allergy activates a bunch of these faulty thinking patterns. Most allergies are caused by weeds or grasses. Public perception has been shaped by decades of advertisements for allergy medications. Seasonal allergy sufferers have the itchy noses and eyes and the sneezing characteristic of “hay fever.” In ads folks take an over-the-counter pill; moments later, symptoms are gone and they’re ready to enjoy their day. As a result, most people think they know what an allergy is; a problem with annoying, but not life-threatening, consequences.
Add to this public perception the phenomenon of “confirmation bias.” Confirmation bias is the tendency for people to seek out or interpret information such that it confirms what they already believe. In addition, people tend to reject or ignore information that contradicts what they believe. Most food allergic folks have shared basic food allergy facts and received responses like, “No, that can’t be!” “one bite won’t hurt him!” “she looks so healthy – she’ll be fine.” This is confirmation bias at work. People believe that A) “allergies” are not life-threatening, B) that they know what healthy looks like, and C) small amounts of food couldn’t hurt anyone. Information to the contrary doesn’t get in. The disbelievers think they are correct and try to convince the food allergic of their view. They may even believe they’re are helping; wouldn’t we be happier if we realized food wasn’t so dangerous? One of the trickiest things about confirmation bias is that the person doesn’t know it’s at work. Their perceptions seem perfectly accurate to them, and we go around in circles trying to convince them otherwise.
The Availability Heuristic
Human beings also misjudge the likelihood of things based on how easily we can recall them happening, and how vividly we can imagine them. Things that have happened recently, and included intense emotion are recalled easily. As a result, those things seem more likely. For example, people are more likely to be afraid of flying, though statistically, car crashes are more likely. Plane crashes are covered heavily in the media creating emotionally intense memories that are easy to call to mind.
Base Rate Neglect
Human beings also tend to misjudge the likelihood of something happening. We are likely to ignore the statistical probability of the event and instead focus on specific information within our own experience to predict a future event.
Now, imagine two parents with a food allergic child. One carries an epinephrine auto-injector everywhere, even to the mailbox. The other might regularly leave it at home. How is it possible that, even within a family, people can have varied reactions to the risk of anaphylaxis? An explanation might lie in how we perceive risk. Unconsciously, when predicting whether something will happen, we are biased toward information that A) fits with our previous personal experiences (base-rate neglect), and B) can be easily imagined (availability heuristic). This helps explain why we sometimes hear: “That can’t be, no one has carrot allergy!” as if the fact that one’s personal experience didn’t include carrot allergic people means that such people cannot exist. Compared to dry facts about FA, people’s personal experiences are more impactful.
For those people who have recently experienced or witnessed a vivid account of anaphylaxis, the probability of it happening again seems very high, perhaps higher than is statistically true. For someone who has never been exposed to a reaction, it may seem unlikely. The parent more vigilant about carrying epinephrine is often the parent who witnessed anaphylaxis. The recent exposure and powerful emotion from the shattering impact of anaphylaxis makes a powerful memory. This makes anaphylaxis feel more likely and drives them to grab the epinephrine on the way out the door.
The food allergy epidemic is a recent phenomenon. Those middle-aged or older didn’t grow up around food allergy, and few have witnessed anaphylaxis. The seriousness of food allergy is hidden, worsening the problem caused by the availability bias. In addition, most people can eat the eight most common allergens (milk, eggs, finfish, shellfish, tree nuts, peanuts, wheat, and soy) every day with no ill effects. Their memories are filled with happy meals of peanut butter and jelly, milk, and eggs. Without vivid, recent memories of food as dangerous, food allergy seems highly improbable to them and the requested accommodations may seem unnecessary, excessive and irrational. This can prompt the negative reactions of dismissal, or worse, the derision that folks with food allergies sometimes face.
Food allergy is an invisible disability. There is a need to educate the public that food allergy is not hay fever and persuade folks to take food allergies seriously. Then when we ask people to disbelieve their eyes and challenge their personal food experiences, they can do so with greater ease.
In an upcoming post, I will discuss the role of our deep connections to food in promoting these misunderstandings. I’ll also review communications strategies help foster connections and bridge this gap.
Gupta RS, Warren CM, Smith BM, et al. Prevalence and Severity of Food Allergies Among US Adults. JAMA Netw Open. Published online January 04, 20192(1):e185630. doi:10.1001/jamanetworkopen.2018.5630
Gupta, R. S., Warren, C. M., Smith, B. M., Blumenstock, J. A., Jiang, J., Davis, M. M., & Nadeau, K. C. (2018). The Public Health Impact of Parent-Reported Childhood Food Allergies in the United States. Pediatrics, 142(6). https://ift.tt/2VkxN9f
Jackson KD, Howie LD, Akinbami LJ. Trends in allergic conditions among children: United States, 1997-2011. NCHS data brief, no 121. Hyattsville, MD: National Center for Health Statistics. 2013. Retrieved from https://ift.tt/29M3KAC.
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