I Was Silenced About My Son's Food Allergy, Just to Stay on a Plane

Female tourist talking to stewardess during a flight in a plane. — Stock Photo: Getty

We were traveling cross-country from New Jersey to Los Angeles so my son Josh, who’s 16, could participate in a big national tennis tournament – the USTA Easter Bowl. We chose to fly United Airlines because they had the best timetable and we wanted to fly into Los Angeles, and then drive to the tournament in Palm Desert. As well, not knowing how far Josh would go in the competition, United had the most choices for flights back home.

I admit I was hesitant in our choice because of a negative United flight experience back in 2013. Some kids, who had been informed about my son’s allergy and were going to be on our flight home, began throwing peanuts up in the air, crushing them underfoot while laughing and pushing the dust toward us. United crew at the time not only refused to make an announcement to keep him safe but told us both, “If you think he’s going to die, just don’t get on the plane.”

That event was life-altering. It made us feel like second-class citizens and ignited a fire in me to become a leading advocate committed to increasing airlines’ awareness and readiness to accommodate passengers with life-threatening food allergies.

I was cautiously optimistic for our L.A. flight in late March because United had since changed its policy, stating that flight attendants “may“ alert other passengers who are seated near individuals with peanut allergies and ask them if they would refrain from eating nuts. I was fully cognizant that the word “may” stopped short of assuring this would occur on every flight.

But we had flown United successfully twice in the past three years, encountering crews who were empathetic toward my son’s peanut allergy. They had made an announcement requesting those in nearby rows to please refrain from eating peanuts.

As food allergy consumers, until there are standardized food allergy policies throughout the airline industry, we just try to make the best carrier choice. Unfortunately, it often does come down to the individual crew and, on our flight to Los Angeles, the United crews we encountered were both rude and demeaning.

A Pilot’s Dressing Down

Josh, my husband and I pre-boarded the flight to clean for past contamination (a right of food-allergic passengers in the United States). We informed the flight attendants of Josh’s peanut allergy and respectfully asked for those passengers in our immediate area to be made aware. Immediately, there was a change in their expressions and body language. One attendant told me flat out: no matter what his allergy was, she would be serving nuts to her passengers.

She went on to say that she would be getting the pilots involved, because asking to inform those around us of the allergy was not acceptable. She stated that people can eat whatever they want, and it was their right.

Now let me be crystal clear, I did not ask for suspension of any food service including nuts. In fact, having done my research, I know United does not serve peanuts (my son’s allergen), but does serve mixed tree nuts (which he is no longer allergic to).

The attendant did inform the pilot. He came to our seats and proceeded to dress me down. It was completely humiliating. “Did I not know that United was the ‘peanut airline’?” he stated. The pilot said nuts are of vital importance to the airline, and perhaps we should not fly. He then told me in a rude manner that he was going to exit the plane to talk to gate staff about whether the three of us should be allowed to fly.

As he left, he turned back and said that we should have notified the airline in advance. I replied that I had done this when booking the tickets.

‘Do You Want to Stay on the Plane?’

It appeared to me, and later my husband confirmed he also felt that both the pilot and flight attendants were trying to bait me into a confrontation. Presumably, so they could ask us to leave the plane. In my eight-plus years of advocacy, I have honed an ability to remain calm while being insulted, mocked, and belittled for speaking or writing about flying with food allergies. This skill served me well on this day.

While the pilot went off to discuss our situation, one of the flight attendants asked me to come to the galley area to gleefully show me a Thai chicken meal. She said, “All Thai food has peanuts in it, so do you want to stay on the plane if we serve this to everyone?” I asked if she knew the ingredients in the meal, not because I was concerned, but because I was curious if there were such lists readily available. The attendants had no idea if such a list existed or what was in the any of the meals.

If there was any trace of nuts in this meal, I was not concerned because I researched earlier that United does not serve anything with peanut. Cross-contact would not be an issue, I explained, because I never let my son eat airline food. It’s not worth the risk at 35,000 feet. They seemed unhappy with my calm demeanor regarding the meal situation.

The pilot came back, and he and the flight attendant began asking me if we had Epi-Pens. I said, of course we do. To which the flight attendant gaily said: “Well then, we can serve anything – because he can just use the pen.”

Now I could have chosen to educate the pilot and flight attendant. However, I looked over into Josh’s pleading eyes (he just wanted to get to the tournament), and I was silenced. I wanted to address the way they spoke to me for revealing my son’s peanut allergy (as suggested in United’s policy), to relate that you don’t aim to use an auto-injector, and that risking anaphylaxis thousands of feet in the air is never wise. But it was just not worth the risk of being asked to get off the plane.

Once we were in the air, I heard a passenger a few rows down tell one of the flight attendants she was recently on a plane where they made an emergency landing due to a passenger’s anaphylaxis induced by nuts. Not five minutes later, an attendant made a brief announcement to the rows around us and asking folks not to consume peanuts. Somehow, the word of another traveler grabbed their attention.

Making an Invisible Disease Visible

I often wonder: Why is it that food allergies are marginalized by so many, when they are a real medical condition with the potential to take your breath away? I must imagine that people look at my son and see a vibrant, healthy, handsome young man. They don’t “see” any medical issue. The condition inside him, which tells his body to recognize peanut as poison has the potential to debilitate him.

So how do we turn the page on this invisible disease and make it visible?

We need to move the food allergy perception needle from invisible to visible and paint a vivid picture of living with food allergies for those who do not live with this disease. This incident, and the multitude of other airline stories that people have shared with me, indicate that without seeing anaphylaxis, many people question its existence.

I have even been told by senior airline executives, with no ill intent, that they understand food allergies because they suffer from hay fever. These false perceptions of a food allergy not being a serious condition are perpetuated by the media, film industry and comedians who make food allergy the punchline in their jokes. For laughs and clicks, the marginalization of a real medical condition is encouraged in our society.

Taunting or being disrespectful to someone about a potentially fatal food allergy is not merely rude; it is evidence of an unacceptable ignorance and repugnance that people should not have toward each other, let alone toward faultless adults and children. It will eventually lead to situations far more egregious than mine on that flight.

I’m not known to be quiet on topics where I have a strong opinion. One of my friends described my efforts to get pre-boarding established as a right for those flying with food allergies in the United States as a terrier relentlessly chasing a bone. I took it as a compliment, so it worries me that I was chastened into silence in order to stay on the flight to L.A. and avoid further conflict. How do we get flight crews, teachers, parents, entertainers, and society in general to “see” a food allergy for what it is?

Changing perceptions takes time and effort. Getting auto-injectors on flights as well as food allergy training would be a great start for changing the airline industry. If we can train crew on the symptoms of anaphylaxis and response to take, it is my hope they will be less likely to marginalize the condition and perhaps help to prevent exposures. Instead of rudeness, perhaps empathy can be found.

I hope through the food allergy community sharing our stories and the ridicule we often encounter that we can flip the switch on the narrative. What the general public may not be able to “see” is very real. Staying safe with food allergies, and keeping the immune system in control requires strict avoidance of food triggers. This is not a lifestyle diet or preference. Anaphylactic reactions are swift, dangerous, and yes, we sometimes depend on the cooperation of strangers to help prevent them.

I may have been silenced on that one flight, but I hope our community – including our non-profits and our allergists – will join Allergic Living and me in speaking up about food allergy as a disease deserving of visibility, respect, and far greater compassion.

Lianne Mandelbaum is Allergic Living’s airlines correspondent, and the founder of NoNutTraveler.com.