If someone tells you she has cancer, do you believe her? Even if you’ve never had cancer yourself?
If someone tells you he is an alcoholic, do you believe him? Even if you are able to drink alcohol yourself and not become addicted?
If someone tells you she has postpartum depression, do you believe her? Even if you felt nothing but pure elation when you brought home your own bundle of joy?
I bet you answered “yes” to all of the above. Thankfully, diseases, alcoholism, addiction, emotional turmoil, and mental illness have fared well amongst those in the human race with empathy. We may not fully understand or have experienced these issues ourselves, yet we can still believe people and the trials and tribulations that come with these diagnoses. We empathize.
In my experience, for some reason, allergies do not always evoke the same. I can recall countless experiences in which I was made to feel like my allergies were a nuisance, at best, and a figment of my imagination, at worst.
Cue the: Can’t you just ignore the shrimp cocktail on that platter and get back to our conversation? Or Why would that make you sick when it makes no one else I’ve ever known sick?
When I was in my twenties, I was on a plane of a commercial flyer that had a peanut policy of “three rows back and three rows front.” The flight attendant came over the loud speaker before take off and publicly shamed, I mean announced, that a passenger in row 24 had a peanut allergy and rows 21-27 would be served only pretzels. The announcement was met with “oh no”s and “how disappointing”s and looks down row 24 that would make The Plastics from Mean Girls proud. I felt myself blush as it was my allergy that was keeping these people from their salty treat they so clearly desperately wanted. Any self-consciousness faded fast, though, and was quickly replaced by fear. A look front and back showed me that rows 20 and 28 were still pretty darn close to me and since my peanut allergy is airborne, and there is no circulation of fresh air, we might still have a problem. I can usually leave a situation if it causes an issue for me, but I was stuck on a flying vessel thousands of feet in the air. With people who sneered at me. How would this crowd respond to me going into anaphylactic shock? More groans and disappointments as I was further inconveniencing them? Would they continue to roll their eyes rather than make room so I could grab my Epi-Pens and administer them to myself? Or would visible lip swelling and difficulty breathing and hives transform my fellow flyers into believers? Hopefully it wouldn’t require this scene (that fortunately wasn’t realized), but for some, it does take personally witnessing an allergic episode to believe.
After W was diagnosed with FPIES, I was met with more disbelief, especially because the condition is so rare. I had oodles of people tell me in so many words that his condition didn’t exist. Or at least it didn’t used to until everyone starting “dreaming up all this allergy stuff”. I was able to let it go as I knew it was real, as did his doctors. [In just about every specialty there is, I might add.]
After his diagnosis, I also connected with a fellow mom and former colleague who navigated allergies with a child herself. I remember her telling me about how people at school, soccer, music class, her neighborhood, pretty much anywhere they went struggled to grasp the severity of her son’s allergies. She would tell them, write it on his forms, and explain it repeatedly, yet the dots just weren’t connecting. So when I asked how she explained his allergies so that people understood, she told me that she would share the specific example of dairy. “If I put creamer into my morning cup of coffee, I can’t give him a kiss goodbye on the cheek as he leaves for school without him going into shock.” What struck me was not how horrific that she had to switch to being a black coffee drinker just to not jeopardize her son’s life, but that she had to go into the details for people to believe. If she had been telling these folks that her son had epilepsy, would they ask “oh, are you sure? how serious? how many seizures?” before they believed? Doubtful.
So the point, for those of us striving to live joyfully with allergies, is simply to encourage empathy when learning about allergies that haven’t personally been experienced. For allergies are not a nuisance. They are not a way to gain attention. Nor a way to be high-maintenance for the sake of being high-maintenance. Severe food allergies are neither a dietary fad nor a personal preference. Nor a means to inconvenience your fellow travelers or child’s classmate’s parents. A latex allergy is not a ploy to ruin someone else’s birthday party.
Allergies are real. They can be life-threatening. They can be caused by something you’ve never even heard of, or something you’ve been exposed to your whole life. The research is growing. Hopefully, widespread empathy will follow suit.
Until then, let’s all channel our inner Peter Pan: I do believe, I do, I do.