The Kids Are (Mostly) All Right
Many of the young people I spoke with talked not only about their mistakes, but also their triumphs. Remember Sydney Harris, the student who didn’t mention her food allergies at the Chinese restaurant? After her reaction, she had an epiphany: “I needed to be safe and cautious with my allergies and from there I dedicated my time to being an allergy advocate.” She began a blog, joined the teen advisory panel of Food Allergy Canada, and began to make presentations to teachers at her school. She has also started college and is studying nursing.
Likewise, 18-year-old Juliet Larsen, who lives in Orange County, California, found herself dissatisfied with how she was identified as the “peanut girl” in elementary school. Other kids had bullied her, throwing M&Ms and waving brownies in front of her face. She felt as though she “didn’t fit in.” She decided to fight back, and “distance myself from being the ‘peanut girl.”’ Juliet began to sing in talent shows, act in plays, and play basketball; as she grew older, she began to model and started a food allergy awareness club at her high school.
“I decided never to take risks around food, but to take risks with things that required putting myself out there,” she says. In May 2015, Juliet participated on a teen panel at the national food allergy conference organized by FARE, the research and education organization, where she gave a talk about how to “live your dreams” with allergies.
Juliet and Sydney are among many teens who have drawn positive experiences from life with food allergies. Other extraordinary young people have founded baking businesses, created online and in-person awareness and advocacy groups, produced videos, raised money, spoken at conferences, and even lobbied at state legislatures for stock epinephrine and other food allergy laws.
In fact, there is even new research to suggest that coping with food allergies may help to enable teens to develop a range of skills. At the 2015 annual meeting of the American Academy of Allergy, Asthma and Immunology, Dr. Ruchi Gupta and her team at Northwestern University’s Feinberg School of Medicine presented preliminary findings of an online survey of almost 200 food allergic adolescents. In a scientific poster titled “Adolescents with Food Allergy: The Good, the Bad and the Beautiful,” they found patterns of risk-taking quite similar to those seen in previous studies, including almost 20 percent of teens willingly eating packaged foods that “may contain” their allergen, and 13 percent admitting they don’t always carry an auto-injector.
Yet participants also revealed remarkably beneficial experiences emanating from life with food allergies. “The teens in our study reported some positive aspects of living with a food allergy: being more responsible (nearly 89 percent of respondents), becoming better advocates (72 percent), and being more empathetic (64 percent) towards others,” Gupta noted in an interview. “Given how the teen mind is preoccupied with everything that’s going on during this age, we should be impressed by how responsible they actually are,” says the associate professor in pediatrics.
These findings resonate with Kauke and her experience working with teens. “So many teens are responsible, but they get so much press for their bad behavior.” Despite occasional lapses in judgment, Kauke routinely finds that teens demonstrate an impressive ability to care for themselves, and that their friends are often quite good at helping them stay safe, too.
The Power of Peers
As I spoke with teens and young adults across the U.S. and Canada, I was struck by how much they know about their food allergies. They understand how to manage their own health (even if they don’t always do it perfectly). Even more, they get what it means to live with a serious chronic condition that can affect almost everything they do. As a result, adolescents with food allergies recognize the institutional and cultural issues that need to change, and many of them have ideas about how to do this. I came to realize that part of our job as parents and adults is to facilitate the ability of young people to join the conversation and enable them to help lead the way.
Gupta’s study tries to tap into this knowledge. Her survey asked food-allergic adolescents what they want, and nearly 86 percent answered: “more public awareness.” In response to questions about schools, the teens surmised that only 11 percent of their classmates would know how to respond during an anaphylactic emergency, despite the fact that they felt that many classmates (48 percent) were generally supportive about their food allergies. More disturbingly, 43 percent of the respondents reported that they felt bullied at some point because of a food allergy.
These findings have convinced Northwestern researchers of the need to collaborate with food-allergic teens and to focus on how their peers can assist them. In a new project, they are asking young people with allergies to help them develop effective educational programs, and Gupta and her team plan to produce peer-to-peer ideas based on this input. In particular, Gupta hopes that teens can provide clues about how to increase the rates of adolescents carrying auto-injectors, whether reaching that goal is about crafting the right messages or developing new technologies.
Even a small act of kindness from a peer can have a big impact. Colby, a 13-year-old from Rhode Island who plays ice hockey, told me a story about one occasion during a tournament when his team went out for dinner. One of his teammates decided to order the exact same “safe” meal as Colby, who has multiple allergies. “This was by far the nicest gesture a friend has ever done for me related to my allergies,” he recalled. “It made me feel great inside.”
The education organization Food Allergy Canada has been an early adopter of the peer-support approach. It has piloted several projects that position teens as mentors, educators and authors. With the help of the teens on its youth advisory panel, the food allergy organization created WhyRiskIt.ca, a website by and for teens; it features videos on dating and dining with allergies, blogs, and opportunities for visitors to post stories.
The group’s newest project is an e-book, titled The Ultimate Guidebook for Teens with Food Allergies. While doctors have reviewed all of the information, the e-book is completely written by teens. “Given the opportunity, teens have so much to offer,” says Kyle Dine, who is Food Allergy Canada’s youth project coordinator, in addition to his career as a food allergy musician. As well, he notes that teenagers are far more likely to listen to stories and experiences shared by their peers than advice from adults.
When you look around, you begin to realize that adolescents are participating at every level of food allergy advocacy, education and research. For 10 years, FARE has been organizing a yearly Teen Summit in Washington, D.C., where young people from across the country meet and discuss topics important to them. This fall’s summit drew record attendance of almost 400 teens and family members. Meantime, members of FARE’s teen advisory group (called TAG) write articles for the teen blog, advocate, and serve as mentors in all regions of the United States. The Food Allergy & Anaphylaxis Connection Team organization also now organizes annual teen conferences, and FAACT is developing a peer-to-peer program for young adults ages 18 to 24, drawing from their perspectives.
And who can overlook the burgeoning number of blogs and Facebook groups being created by teens? In the online realm, young people exchange information and experiences with enviable ease. Ultimately, educating and engaging those incredibly influential peers, as well as less proactive allergic teens, will help to create a stronger safety net for food-allergic individuals. This safety net and social acceptance are critical factors, so that when mistakes happen, the possibility of tragic outcomes is lessened.
This can play out in ways both large and small. Consider the experience of Natasha Dheda, 21, who got into the habit of eating a certain brand of cookies that carried a dairy “may contain” warning label. In her third year at college, she suddenly had an anaphylactic reaction to these cookies. Although she had an auto-injector with her, she felt unsure and hesitated; she had never given herself an injection. Fortunately, she was with a friend. “Having someone with me definitely helped as it was a hand to squeeze when the needle went in!” she says.
A hand to squeeze when the needle goes in. After all the teaching and training is done, what more could anyone ask for?
Heather Hewett is a writer and professor at The State University of New York at New Paltz. She has written on food allergies for major news outlets and the anthology The Good Mother Myth: Redefining Motherhood to Fit Reality.
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