Food Allergy: Death is Not Our Only Fear

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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.

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