What It’s Like to Live With a Severe Food Allergy
For people with severe food allergies, daily life means navigating a minefield of potential hazards. It’s not just that most food items aren’t guaranteed free from allergens; some people are so allergic to certain foods that coming into contact with even an airborne form can have deadly consequences. Here’s what it’s like to live with a severe allergy, and what we can all do to make it a little bit easier.
What is an allergy?
First, the science bit. “Food allergies are caused by our bodies overreacting to something that should otherwise be harmless,” explains David Erstein, MD, a board-certified allergist and immunologist. “The food is identified as an invader and the body mounts a protective response through the immune system.” This is what sets allergies apart from food intolerances, adds Kathleen Dass, MD, an allergist immunologist who owns Michigan Allergy, Asthma & Immunology Center. “Food intolerance is not mediated by the immune system,” she says. “Symptoms are usually related to the gastrointestinal system and are usually dose dependent, i.e., the more you eat, the more miserable you feel. Symptoms are usually predictable and the same with each ingestion.”
In contrast, Dr. Erstein says, the severity of an allergic reaction is unpredictable, and can range from mild to severe. “Reactions can also progress to life-threatening stages called anaphylaxis if not treated promptly,” he said. Other symptoms of an allergic reaction may include hive and rashes, itching, swelling of the lips, face, and throat, respiratory distress, lightheadedness, abdominal discomfort, vomiting, and diarrhea. Why some people have allergies is a bit of a mystery, though genetics and environment do seem to play a part, Dr. Dass suggests. And you are more likely to have them, he said, if you have a family history of food allergies, allergic rhinitis, asthma, or eczema.
What is it like to live with an allergy?
As Dr. Dass explains, a food allergy can occur with even tiny amounts of food, which means people who have allergies have to be very careful. “Having food allergies can be compared to having a disability [in that] you have to learn to navigate everyday life and adapt around them,” says Joelle Speranza, a publicist and author of Trash the Dress: Stories of Celebrating Divorce in Your 20s, who has allergies to soy, raw fruits and vegetables, nuts, and certain fish. “I’m allergic to soy in everything — from pasta sauces and pizza dough to sprinkles for ice cream and breadcrumbs. So I basically can’t eat anything unless we make it at home or it’s an allergy-free food brand.”
As you can imagine, this complicates situations that people without allergies take for granted. “I recently went to a wedding that was buffet-only and brought my own food,” Speranza says. “Otherwise I would have no food because there was no kitchen to prepare me a special meal. I know it’s kinda weird and awkward, but I’m not going to starve myself, so I will always be prepared with my own little to-go bag of food.”
As Dr. Erstein noted, allergies can be unpredictable, and can change over time. “When I had my first child I became allergic to shellfish and fish — my favorite food. And my soy allergy got worse,” Speranza laments. “When I had my second, some of the fish allergies went away, but I got nut allergies.” She’s not alone: In one study, about a third of pregnant people saw their allergies get worse during their pregnancy, although another lucky third found they improved, while the rest experienced no change.
The unpredictable nature of food allergies means it can take only one slip up for the worst to happen. Michael Suhy started the Allison Rose Foundation (ARF), a nonprofit dedicated to helping people with food allergies and their families, as a tribute to his daughter, who died from an allergic reaction shortly after leaving home for college. “Our daughter Allison lived 18 years with a severe nut allergy and never experienced anaphylaxis until it took her life,” he says. “I want those who are fortunate enough to have never encountered severe allergies to understand how life threatening they can be.”
Another person trying to make sure people with food allergies get to live full lives is Kathlena Rails AKA The Allergy Chef, a blogger and entrepreneur whose business raises awareness of food allergies and includes a line of allergen-free baked goods. Rails has multiple severe and life-threatening food allergies that are both contact-based and airborne. As well as never eating out, she wears a respiratory mask and avoids touching anything outside her house. But like Speranza, she’s not giving in to her allergies: “I try to not allow my condition to impair me from functioning as a normal human,” she says. “Once you’ve been in this world for more than a year, it gets a lot easier. You have your go-to items, and I call manufactures yearly to make sure nothing has changed. Farmers’ markets are also good, as you can usually talk to the growers directly.” Her bakery helps her give people in the same situation the chance to taste the sweet life without fear.
How can everyone help people with allergies?
First of all, understand that this is not a choice. “Honestly, my main annoyance is that most people think that my allergies are just a preference,” says Gabrielle Boyd, a publicist in Los Angeles who is allergic to nuts, including peanuts, and shellfish. “I have had vegetarians compare themselves to me. No! It’s not the same — you choose to be a vegetarian. I do not choose to have life-threatening food allergies, and I would actually prefer to not have them!” If someone tells you they are allergic to something and feels nervous about trying new places or food that you’ve made, be considerate and understand that it’s not coming from a place of rudeness. Want to help? That could mean providing allergen-free food at a party you’re hosting — and subtly making sure they get first dibs on it — to just being basically polite. “If you see someone like me in a full-face respirator, don’t be that guy who points, laughs, or harasses,” Rails says.
Another important way to help is by learning more about allergies. Suhy says, “I strongly encourage people who know someone with a food allergy to learn as much as they can about the severity of food allergies, the signs and symptoms of a severe food allergic reaction, and what to do in case of an emergency.” Knowing a friend has your back can be a real source of comfort to people with food allergies and can help them feel included, he says That said, the key to making people feel part of a group is making sure their allergy isn’t the only thing you talk about. “We’re more than our diagnosis,” Rails emphasizes. “Whilst most of us don’t mind a few polite and respectful questions, don’t make our medical condition the center of most conversations. We have other interests too!” Watch out for your friends — and everyone can have fun.
Do you have a severe allergy that’s impacted your life? Tell us how you deal with it @BritandCo.
(Photo via Getty)