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.
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