Imagine having to plan every aspect of your day around foods that won’t potentially poison your body, researching every restaurant you step foot in, reading every label and bringing your own food to gatherings and on airplane flights. Exhausting, right?
About 32 million Americans cope with food allergies, and the prevalence among children is reportedly on the rise. Yet there is a pervasive lack of understanding about the serious nature of this invisible illness, which leads to misguided or downright rude comments.
“Food allergies are the Rodney Dangerfield of disease these days: They still don’t get respect,” said Lianne Mandelbaum, the founder of No Nut Traveler, an advocacy and organising nonprofit focused on food allergies.
Everyday threats posed by food cause real anxiety for people with allergies, according to the Food Allergy & Anaphylaxis Connection Team, a group seeking to raise allergy awareness. Managing food allergies leads to burdens and social isolation. As the mom of a child with coeliac disease — an autoimmune disorder triggered by eating gluten — I know how important it is for people to ask the right questions and provide support.
I spoke with professionals and patient advocates to unveil some of the rude comments people make around food allergies, why they aren’t helpful, and better ways to offer understanding and ease the burden of this issue that affects all parts of their lives.
Dining Out
‘Can’t you eat out like normal just this once? It’ll be totally worth it.’
People may simply be trying to invite a person with food allergies to dine out, but this statement can sound dismissive of the person’s disease.
“People don’t understand that celiac disease is not a diet or a choice,” said Erica Dermer, the founder of the blog Celiac and the Beast and a community relations manager for the gluten-free charity GIG Cares.
“Eating gluten-free is a medical necessity. Even though my reaction to gluten is not life-threatening like a peanut allergy, I can suffer repercussions for days while my system heals, even if I eat a food that has cross-contact in a restaurant.”
She added, “I travel a lot, and I wish people would recommend interesting sightseeing places instead of restaurants when I visit.”
Say it better and do better: Many people without food allergies are able to eat whatever, whenever. A nice approach when socialising with someone who has major food limitations is to ask them to recommend a great restaurant that you both can enjoy. Don’t worry — “gluten-free” no longer means just salad or food that tastes like cardboard.
‘I’d die if I couldn’t eat that.’
People with food allergies get it: Food is an essential, and doing without our favourite foods is shocking, unsettling and uncomfortable. This off-the-cuff statement is common, but it is not helpful and just adds to an already weighty burden.
Even my 12-year-old daughter has gotten used to this one. She told me: “It’s annoying. People say it all the time, but I’ve learned to ignore it.”
Say it better: “Position your statements as supportive,” Dermer suggested. “Ask ‘how are you doing?’ and express your empathy about the difficulties of their daily life.”
When someone with a food allergy feels understood by others, it means a lot and shows real compassion.
‘Can you eat the vegan option?’
Roanna Canete, the owner of The Gluten Free Baking Co. in San Diego, said that she regularly encounters servers who confuse vegan and gluten-free offerings. “Veganism is often an ethical choice, not a health precaution like a wheat allergy or celiac disease,” she pointed out.
Say it better: “I want my server to know that my food requests are serious when I say I have celiac disease,” Dermer said. Rather than saying “how sensitive are you?” ask a question that shows more understanding of a person’s circumstance, like “is this an allergy or a preference?”
Not all restaurants accommodate food allergies or celiac disease. But a well-trained staff thoroughly understands the menu and kitchen protocol, and can welcome guests with food allergies to enjoy a meal without worry.
Dermer recalled a recent dining experience in Chicago with Lettuce Entertain You restaurants. “Our server greeted us with ‘are there any food allergies at the table today?’” she said. “I felt safe and comfortable from the start. ... That’s so rare.”
At The Homes Of Family And Friends
‘Let me make you _____.’
If someone with an allergy is at the home of a loved one who insists on cooking for them without asking first, that can lead to an awkward situation. The guest with a food allergy probably doesn’t want to hurt feelings or feel guilty by saying no.
Canete said she often hears stories about something going awry when friends or family attempt to make safe treats for people with allergies. “My customers recount times when Grandma added just a little regular flour to a cake, or cross-contamination in a well-intended friend’s kitchen caused them to get super sick,” she said.
Say it better: “Before offering to cook for a person, ask ‘how can I keep you safe?’” Canete suggested. “Or [say]: ‘We want to have dinner with you. Help us understand what can you eat.’ This allows the person to explain their needs in a way that validates them with dignity and respect.”
On the other end of the spectrum, some families express overwhelm, and don’t want to be educated about a food allergy, claiming they can’t possibly do anything to accommodate it. This attitude places a huge weight on the person with the allergy, who then always has to host or prepare numerous dishes. This may even lead some people to distance themselves from family gatherings.
At The Airport Or At School
‘Just don’t fly.’
“That’s just not equitable,” said Mandelbaum whose teenage son travels nationwide to play competitive tennis. “People with food allergies fly for the same reasons others do: for business, to competitions, and to visit family members.”
She recalled an anecdote from a person with food allergies who chose not to fly and instead drove to visit a dying family member, only to miss saying goodbye by a short while.
Mandelbaum’s organisation, No Nut Traveler, collaborated with researchers and doctors to launch a survey with Northwestern University’s Center for Food Allergy & Asthma Research in Chicago. Almost 5,000 people responded to questions regarding food allergies and air travel, with one-third of respondents saying they didn’t disclose their allergy to airlines due to anxiety over how they would be treated by the staff and passengers.
Recently, Mandelbaum filed a formal complaint with the Department of Transportation regarding the treatment that she and her son received on a United Airlines flight. She said that a staff member with the airline refused to follow the company’s protocol to create a buffer zone on the plane for people with food allergies.
Do better: Mandelbaum emphasised a fact that we all know: “Humans are messy when they eat. So when someone with a food allergy asks to pre-board in order to wipe down their seating area or asks for a buffer zone, they are taking responsibility to mitigate risks.” She said she hopes that with more education and understanding, airline staff members and fellow passengers will show compassion rather than get annoyed.
’Why does everyone have to suffer?’
The general public might feel annoyed when asked to forgo a certain food during a flight or at a school event. But “suffer” is a harsh word, meant for harsh situations. Mandelbaum said she hopes more people will gain better understanding and empathy toward the real severity of food allergies.
“Someone dying by their throat closing up is suffering. Making accommodations so a person with a food allergy can take a flight or enjoy a classroom party is a decent, responsible action of a concerned citizen,” Mandelbaum said.
“When a flight crew asks to create a buffer space for a person with a food allergy, they are asking those in the immediate area to choose to sit in a different space or choose to eat food without the allergen for a period of hours. That’s not suffering.”
At schools, the complaints about “suffering” often come from parents of nonallergic schoolchildren. It’s prudent for parents of children with food allergies to communicate their situation and needs early in the school year, so teachers and room parents can plan ahead — but some of them may react negatively.
Do better and say it better: Mandelbaum pointed out that those who comply with airline policies regarding food allergies are acting responsibly, as they are safeguarding the life of a fellow passenger and the satisfaction of all others by helping prevent a possible medical emergency.
Meanwhile, the most positive thing that parents, teachers and schools can ask is, “How can your child participate safely?” This allows for accommodations to make class events inclusive of everyone. Most parents of food allergy children agree: We don’t want celebrations to revolve around our kids. We just want them to be able to participate as fully as possible.
‘You’re a complainer raising a weakling.’
“Quite the opposite of being weak, kids growing up with food allergies have to learn to be assertive more than the average kid,” Mandelbaum said. “They endure the annoyance of refusing questionable or unsafe food every day, and learn to voice their needs clearly.”
Flying can be stressful, and irritation can cause some to pass judgment when they see “normal-looking” people pre-boarding or asking a flight attendant for a buffer zone. But this can belittle a person’s real medical needs.
“I’m not asking because I want preferential treatment,” Mandelbaum said. “Like any parent, I’m trying to keep my child safe.”