I see a lot of articles about empathy, or lack of it, when it comes to understanding food allergies. There is great communication and discussion within the food allergy world, about the need for people on airlines, in schools and in our homes to understand that our children are deathly allergic to certain foods. The problem is, the rest of the people we want to reach are not involved in this dialogue.
This creates an us-versus-them mentality that is full of misunderstandings and underestimations. We erroneously conclude that these people are selfish, disrespectful, careless, and lacking in empathy, and they don't get that we just want our kids to be safe. What if there was a reasonable explanation for this gap, rooted in science, that offers reasons for why the chasm between these two groups is so wide. According to a psychologist, the difference between the two groups simply comes down to experience.
Gia Rosenblum, PhD is a licensed psychologist in private practice who writes about the psychosocial issues of food allergies. In her recent Psychology Today article, Resources for Understanding and Coping with Food Allergies, Rosenblum talks about “significant relationship stress” that can be caused by food allergies. Been there, done that - as my daughter’s severe food allergies have caused stress between me and everyone from her girl scout troop leader to her school principal to her teachers, friends’ parents, and even our own family members.
According to Rosenblum, this is because we have seen the reactions, read the articles, taken our kid to the hospital, etc. and they have not. Simply put, those who are lucky enough to have never witnessed anaphylaxis tend to minimize food allergies, and those who have, don’t. And this can put deep strains on the best of relationships.
Rosenblum offers some explanations rooted firmly in psychology. It’s been a long time since I was a psych major in college, but the terms confirmation bias and availability heuristic rang a distant bell. It turns out that as far as our brains go, it’s really really hard to change behaviors and incorporate new evidence. Our brains like the well worn neural pathways, and when a new attitude, belief or behavior is suggested, our brains are as stubborn as the uncle who doesn’t want to put that bowl of nuts away.
Confirmation bias looks at how new information is integrated with existing beliefs to influence behavior. To the unindoctrinated, allergies can be anything from hay fever to insect bites. Not anaphylaxis, and certainly not death. Take the belief that small amounts of food couldn’t hurt anyone. It’s plausible that someone thinks food allergies are like their dairy intolerance and the result of eating an offending food is a stomach ache. What they do not know is that a tiny particle of the food allergen is all it can take to trigger a reaction; sometimes even dust particles in the air can cause a reaction even without any consumption at all. Which is why cross-contamination is the culprit of so many reactions.
Since people understand allergies in the context of what they have experienced, they can easily confuse a legitimate food allergy with their vegan diets, gluten intolerance, bee stings or even their dog’s allergies. I used to think it was selfish, rude and ignorant on their part. But this article has me thinking twice. Maybe they just don’t know what they don’t know.
You see, people believe they know what healthy looks like. They see my daughter living an active, productive life and most of the time she really is a happy, healthy, well-adjusted person. What they don’t get is that this can change in a heartbeat from peanut butter residue on the refrigerator handle. Food allergies are recognized as a disability, but it is an invisible disability. People can’t see it. It’s hard to imagine that someone so full of life can be just one forkful away from anaphylaxis. But for those who know, danger lurks everywhere and can strike anytime. Any reaction has to be treated as life threatening, involving shots of epinephrine, IVs of anti-histamines and steroids and a mandatory 4-hour trip to the ER. Any parent who has survived their child’s anaphylactic attack is not going to be lax with the food. While they know too little, we know too much.
A second theory offered by Rosenblum is the availability heuristic, which suggests that if something happened before, we think it is more likely to happen again. If your child has food allergies but has never had a reaction, she might be less likely to remember her EpiPen. Conversely, the opposite is true as well. Because my daughter knows anaphylaxis and knows her EpiPen reversed her symptoms, she will never leave home without them. As explained by Rosenblum, recent and intense emotions from past experiences are easily recalled.
For me and my daughter, there is another layer of the availability heuristic at play. My husband, her father, passed away at age 31 from a sudden, severe asthma attack. I was pregnant at the time - my daughter never got to meet her father. By the time she was in kindergarten, she was diagnosed with asthma and a peanut allergy after exposure on a playdate. Her test numbers were off the charts and her doctor squeezed my arm, looked into my eyes and said “you need to know how serious this is.” I was beside myself with panic and anxiety, thinking that what happened to him might happen to her. As she got older she also developed allergies to soy protein, chickpeas, peas, and lentils. She has anxiety that she is also going to meet the same fate as her biological father. We actually talk about that, and it crushes me to know that this is weighing on her. Imagine all the anxiety a food allergy kid has to carry around, plus the weight of her genetic parent’s demise. It’s almost too much. It is too much.
So, how do we cross the chasm? How do we get the non-allergy people to learn what we know, and have the understanding and empathy required to reduce relationship stress? The real question is, can food allergies be taken seriously without someone suffering from anaphylaxis or death? Does someone need to die on an airline before the crews will stop offering nuts? Does your child have to become unconscious in the school cafeteria for them to understand cross-contamination? Do I have to continue to take my daughter to the ER from family events because they continue to sneak pbjs? I hope not. But with some strategic media campaigns, policy changes and sharing of stories maybe awareness can be shared and empathy can be attained. And maybe we can learn some empathy too as we education the rest of the world.