Food allergy: Death is not our only fear

Recently, a respected allergist reassured his audience: the mortality rate for food allergy is very low. The risk of dying in a car crash is much greater than the risk of dying from food allergy. The implication seemed to be that the anxiety around food allergy is misplaced. Though any loss of life is too great; statistically, food allergy deaths are rare. To the food allergy community, it just doesn’t feel that way. As a scientist, I believe evidence should triumph over emotional reasoning. But as a food allergy mom, I was not reassured. Other food allergy families present that day felt the same. Why, I wondered, is there so much anxiety?

We learn “Epi first, Epi fast” as the life-saving recipe. Death is infrequent, but in food allergy non-life-threatening reactions may be indistinguishable from life-threatening ones at the point where we must inject Epinephrine and call 911. Every reaction beyond the mild, single-system reaction must be treated as life-threatening. Thus, we are not able to live the statistical reality that mortality is rare.

Moreover, 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 repeatedly had painful skin-prick tests, blood-work, and epinephrine injections. It’s about embarrassment and stigma and bullying and isolation. It’s about the looming threat of positive experiences being ruined for everyone 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 jobs turned down and careers truncated because they involve dining with clients or frequent travel. It’s about knowing you can’t feel relief when EMTs come because they don’t always have epinephrine, and sometimes ED doctors don’t know epinephrine is first-line treatment for anaphylaxis.

Anaphylaxis is intensely aversive, highly anxiety-provoking, and, if perceived to be life-threatening, can be traumatic for all involved. In food allergy, fear of escalation to anaphylaxis accompanies even mild allergic symptoms. This fear remains until and unless the body demonstrates clearly that anaphylaxis is not in the cards this time. Due to these considerable costs, we strive to prevent any reaction, not just to prevent death.

Importantly, mortality may be low because food allergy safety behaviors have limited allergen exposures to small doses and increased early epinephrine use. But these particulars don’t assist parents trying to instill safety behaviors in their children. Teaching a child that sharing food is never ok means using clear, unequivocal language: “never,” “danger,” “sick,” “hospital,” “needle,” “death.” Parents use this language to influence children because it works—via fear. And once the fear is established, learning accurate mortality statistics years later is unlikely to resolve it.

We also use unequivocal language with adults 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 to prove we’re overreacting, the family members who routinely forget the epinephrine when out with our kids. When informed about low death rates, some focus on the statistics and dismiss the need for safety behaviors, ignoring information unless it proves their point. Telling them, “The risk of death is low. But follow these rules every time”, might increase the probability that they disregard safety behaviors, as they ignore everything but “the risk of death is low.” So, we say, “Read the labels, every time, or she could end up in the ER,” or “You have to take the Epi every time or he could die.” Fear is the blunt instrument most effective to accomplish our goal of reducing risk.

Over time, enhanced by fear, behavior becomes belief. It is difficult to divorce consistent behavioral patterns from beliefs compatible with those behaviors. Given the requirement to act like every exposure will cause a reaction and every reaction is deadly, our fears feel valid.

Thus, we in the food allergic community live like we are under constant threat. To address this, adults need help reducing their anxiety and learning non-fear-based strategies for teaching safety to children, so the transmission of anxiety to children is reduced. Children require developmentally graded information about risk, so they understand the facts and don’t unnecessarily restrict their lives. Social and emotional skills training would ease embarrassment about asserting food allergy requirements, lest people compromise safety in favor of social comfort.

Adolescents and adults should envision themselves implementing safety plans unhesitatingly and with authority. Thorough education about identifying anaphylaxis would prevent uncertainty from hindering emergency response. Increased comfort with epinephrine administration via strategies like role play and needle phobia reduction training would reduce anxiety about implementing safety plans. Social support and psychotherapy improve coping and reduce distress, they should be available to all. We must champion efforts to ensure that EMTs and physicians have the most current knowledge of intervention for anaphylaxis so when help arrives anxiety subsides.

Professionals owe the food allergy community clear and accurate information about the risks we face. Ideally, all professionals would have the most thorough and up-to-date information about food allergy and how patients can manage safely while living full lives. They would help each person plan for appropriate, but not excessive, vigilance.  It is crucial that the multiple causes of food allergy anxiety, some from subtle, hidden, and nuanced sources are well understood. Compassionate providers genuinely care about their patients. These additional understandings would deepen their empathy and increase their facility in helping us cope.

Every professional-patient contact should include accurate information about risk and safety, ample support, and opportunities to develop skills for confident food allergy management. In the presence of these additional supports, it should be a source of great comfort to learn that safety 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 D. Rosenblum is a psychologist and serves on the outcomes research advisory board, Food Allergy Research & Education (FARE).

Image credit: Shutterstock.com

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