Food Allergy: Death is Not Our Only Fear
By Gianine D. Rosenblum, PhD
At a recent food allergy event, a highly respected allergist reminded the audience: the mortality rate for food allergy is very low. He offered this as reassurance; people rarely die, so you don’t have to be afraid. The implication seemed to be that anxiety in the food allergy patient and family community is misplaced.
Though any loss of life is too great, the esteemed physician was telling the truth. Death from food allergy is rare. A very low probability event, rare. The risk of dying in a car crash is much, much greater than the risk of dying from ingesting a food allergen. But for folks with food allergy and their families it doesn’t feel that way. Confirming that my child is more likely to die in a car crash than from accidentally eating peanut protein didn’t do much to alter my sense of threat from food allergy. Checking in with many other food allergy families in the audience that day, I learned that they felt the same.
In addition to being the mother of a teen with multiple food allergies, I am a psychologist and a scientist. I believe in the power of data and statistics, and that an appeal to facts should triumph over emotional reasoning. So, the reactions to his comment gave me pause. Why are we not comforted? Why is there so much anxiety?
The food allergic are taught: “Epi first, Epi fast” as the life-saving recipe. And although the risk of death from food allergy is low, non-life-threatening reactions may be indistinguishable from life-threatening ones at the point where the decision is made to inject Epinephrine and call 911. Every reaction beyond the mild single system reaction must be treated as potentially life-threatening. As a result, we are not able to live the statistical reality that mortality is rare. To keep mortality rates low, we must behave as if every exposure will cause a reaction and every reaction is deadly.
What’s more, we are anxious because food allergy anxiety is not solely about fear of death. It’s about the massive distress, disruption, and expense of an allergic reaction. It’s about the needle phobia of kids who’ve had painful epinephrine injections, skin-prick tests, and blood work over and over. It’s about embarrassment and stigma and bullying and isolation. It’s about the looming threat of positive experiences being ruined for you and those around you if you have a reaction. It’s about having to interrupt every food-related experience with probing questions about food ingredients and preparation. It’s about the loss and disappointment and discomfort when there is no safe food and you can’t eat. It’s about the jobs turned down, and careers truncated because they involve dining with clients or frequent travel. It’s about knowing that you can’t feel relief when the EMTs come because sometimes they don’t have epinephrine, and sometimes the Emergency Department doctors don’t know epinephrine is first line treatment for anaphylaxis, and you must fight for proper care.
The experience of anaphylaxis, even with the knowledge that complete recovery is highly likely, is intensely distressing, highly anxiety-provoking, and, if perceived to be life-threatening (whether or not it is), can be traumatic for patients, loved ones, and witnesses. For the food allergic, even mild symptoms of allergic reactions are accompanied by the fear of escalation to anaphylaxis, which propels additional anxieties. This fear remains until and unless the body demonstrates clearly that anaphylaxis is not in the cards this time. Due to these numerous, very tangible costs, we are constantly striving to prevent any and all reactions, not just to prevent death.
Indeed, mortality may be low because food allergy safety behaviors have limited allergen exposures to small doses and increased early epinephrine use. But these facts are of no help to parents trying to instill those safety behaviors in their young children (or their adolescents for that matter). When impressing upon a child why taking a cookie from a friend is never ok, parents must use clear, unequivocal language: “never,” “danger,” “sick,” “hospital,” “needle,” “death.” We use this language because it works. Of course, it works via fear. And once that fear is in place it’s hard to undo by learning years later that the statistics differ from the message you’ve been given since you were two.
We also use this language with the adults around us who don’t “get it” — the people who think food allergy isn’t real and serve nuts at the party, the people who might slip our kids some milk just to prove we’re overreacting, the family members who routinely forget the epinephrine when they take our kids to soccer practice. Some in this group, when presented with the data on low death rates, will focus only on the statistics and dismiss the need for safety behaviors — as if safety behaviors and safe outcomes are unrelated. Others tend to ignore information unless it proves their point. Telling them, “The risk of death is low. But just in case, you have to follow these rules every time”, might only increase the probability that they will disregard reasonable safety behaviors, as they only pay attention to “The risk of death is low” and ignore the rest. So, we say, “You need to read the labels, every time, or she could end up in the emergency room,” or “You have to take the Epi every time or he could die.” Once again, we use fear. It is the blunt instrument most effective to accomplish our goal of reducing risk.
A good psychologist will tell you: over time, especially when infused with fear, behavior becomes belief. It is very difficult for human beings to divorce their consistent behavioral patterns from beliefs compatible with those behaviors. Disconnecting behavior and belief creates confusion, internal conflict, and more anxiety. The more dramatic the behavior, the harder it is to maintain the discordance.
Thus, for good reasons, the food allergic community behaves, in words and actions, as if we are under constant threat of death. To address this systemic issue, adults need help with their anxiety, so the transmission of this anxiety to children is reduced. Parents must be helped to learn communication strategies other than fear for teaching safety to their children. Children must be given developmentally graded information so as they are old enough to understand risk they can learn the facts, and not unnecessarily restrict their lives. Adolescents and adults need help with social and emotional skills to reduce the embarrassment from calling attention to their food allergy needs, lest they choose to compromise safety in favor of social comfort.
Thorough education is needed about identifying anaphylaxis so uncertainty doesn’t hinder emergency response. Increased comfort with epinephrine administration via strategies like role play and needle phobia reduction training, can reduce anxiety about implementing safety plans. Adolescent and adult patients and caregivers should be able to envision themselves implementing those safety plans unhesitatingly and with authority. Social support, psychotherapy, and other stress reduction tools improve coping and reduce anxiety and should be available to all. In addition, we must reinvigorate efforts to ensure that emergency responders have the most current knowledge of intervention for anaphylaxis so when help arrives anxiety can subside.
Professionals owe it to the food allergy community to be clear and accurate about the risks we face. Ideally, professionals of every type would have the most thorough and up-to-date information about food allergy and how patients can manage safely while living full, rich, enjoyable lives. They would help each person craft a plan to adopt appropriate, but not excessive, vigilance. It is crucial that professionals who interact with the food allergy community understand the multiple sources of food allergy anxiety, some from subtle, hidden, and nuanced sources. Most providers have compassion, and genuinely care about their patients. These additional understandings would deepen their empathy and increase their facility in helping us cope.
Accurate information about risk and safety, combined with ample support and opportunities to develop skills for managing food allergy with confidence should be part of every professional-patient contact. In the presence of these additional supports, it should be a source of great hope and comfort when we are re-grounded in the reality that plans are almost guaranteed to keep us alive, and that statistically we are indeed safer walking the world with food allergies than riding around in our cars.
Gianine (Gia) Rosenblum is a licensed psychologist in New Jersey and a food allergy mom. She has over 20 years of experience in clinical practice and more than a decade in psychological research and teaching. She currently specializes in treating trauma/PTSD in adults and adolescents. In collaboration with allergists, she has worked with adults, children and parents coping with food allergy and those who have experienced or witnessed anaphylaxis. Rosenblum is a member of the American Psychological Association and the NJ Psychological Association. As a food allergy mom, she has been the safe baker, label-reader, and waiter interrogator, and has testified at state hearings on epinephrine in schools, appealed insurance company denials of Elecare, and fought denied boarding on airlines. She serves on FARE’s Outcomes Research Advisory Board.
Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. — or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE — support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH — enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE — encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit www.foodallergy.org and find us on Twitter@FoodAllergy, Facebook, YouTube and Instagram.