Recently I had a friend tell me that it was “increasingly frustrating” to go out with me. “I’m sorry it feels like that,” I replied, “but you have no idea what it is like for me every day to have to deal with an inhalation allergy that limits and affects every facet of my life. I’m sorry if every now and then it affects yours too.” She is not alone though, I’ve had many others repeatedly make jokes about my shellfish allergy; heck, even my kid, who has her own severe allergy to tree nuts, has chased me around a supermarket with a bag of frozen shrimp because she thought it was funny. I’ll assure you now, it was not! None of it is funny and none of it helps to decrease the perpetual state of panic that me and millions of others who suffer from “invisible” life-threatening allergies have to deal with on a daily bases.
Therefore, for this Food Allergy Awareness Week I would like to take a moment and prattle on about food allergies, but not food allergies in children and not peanuts. I appreciate the severity of food allergies in children, but children are not the only ones who suffer life-threatening allergic reactions to food, and peanuts are the least of my worries, thankfully. A recent article reported that in the US greater than 1 in 10 adults has a food allergy, close to half of which came about during adulthood. The number one food allergy, the one that dominates my life and 7.2 million other US adults, is shellfish (shrimp, crab, lobster etc.) Seven point two million, that is not — we are not — an insignificant number.
My story began just like the stats say, in my mid-twenties; I was out to eat with my wife and her family at a favorite neighborhood restaurant, when all of a sudden my body started having a complete systemic reaction — shortness of breath, nausea, diarrhea etc. I had no idea what was going on, having never had an allergic reaction to anything ever before, it hadn’t even occurred to me that could be the issue. But unfortunately a few more incidents later, and then a severe reaction abroad, and the reality of the situation quickly, dramatically, made itself apparent.
Having a food allergy is quite honestly one of the scariest things I have had to deal with, every day I wake up and literally hope for the best, hope that when I walk out the door that I am not exposed to shellfish at work, or while out with friends, or at conferences, or just walking down the street. I can’t even fly internationally (check out my Huffington Post article), and flying in general is like playing Russian roulette regardless, thanks to the increasing emergence of fast-food and take out restaurants like Chickie’s and Petes and Popeyes that serve shellfish, showing up in every terminal in my hometown airport. See not only do I have an ingestion allergy to shellfish but I also have an inhalation allergy, which means if shellfish is being cooked, and I happen to be breathing air in the vicinity, I will have an allergic reaction. It is an invisible “disability” that most people generally don’t understand, and it seems, especially if you are an adult with a food allergy, people generally don’t take seriously.
I have been dealing with this reality for close to 20 years now, over those two decades the sensitivity to the allergens have gotten worse, hence the inhalation component. What I would like people to understand, what I need people to understand, what I implore people to understand is this, for people with food allergies, every…single…minute of every…single…day is like a ticking time bomb. Every event you go to, every house you enter, every restaurant you walk by or — god forbid enter, you have to hold your breath (literally and figuratively) and hope that you won’t be exposed.
I want people to understand why we decline to go to your house party, or why we don’t frequent your restaurant, or why we don’t to go to your work reception or wedding, even though we would love nothing more than to do so.
I want you to understand how hard it is for us to have to share this allergy with you every day, to have to explain to workers at restaurants and staff at conferences or events who have no idea what a shellfish is but who nevertheless assure you that they definitely won’t/don’t/aren’t serving it, only to have you show up and once again and be exposed, once again, down multiple Benadryls and prednisones, hoping, wishing, nay praying that you got out of there quick enough, that you won’t have to take that epinephrine, that you won’t have to go to the ER again, and hope that your life does not end.
Times are changing though, albeit slowly, thanks to people like food allergy advocate Lianne Mandelbaum (The No Nut Traveler) and awareness campaigns such as the one for #FoodAllergyAwarenessWeek. People are starting to look at me less confused when I ask them about the food they are serving, and recently at a conference my food allergy was listed on the back of my badge along with emergency contact information (thank you American Nurses Association)!
Yes, it feels like things are slowly changing, but there is much, much more to be done, we need more empathy and understanding, we need more funding and research, and we need less food allergens in places where they don’t belong (I’m looking at you airline industry). People with food allergies want to be able to go out to eat with friends, we want to be able to go on international flights with our families, we want to be able to socialize with our colleagues at events, and most of all, importantly of all, we want to be able to leave the security of our homes and feel as safe outside in the world as we do within.