The Emotional Toll of Food Allergy
Nurse practitioner Jamie Saxena had a suspicion. She was pretty sure that the 11-year-old boy sitting in the exam room was not allergic to peanuts, even though he’d avoided them his entire life. The only way to be sure was to try an oral food challenge with him, giving him tiny but increasing amounts of peanut to see if his body reacted. Most of the doses had been so small that she had to use peanut ﬂour, which she mixed into pudding. No allergic symptoms appeared. Eventually the dose reached the point where he was ready to try the actual food. Saxen gave him a peanut M&M. But instead of eating it just as he’d been doing, he froze. “He could not bring the food to his mouth,” says Saxena, who is part of our team at Stanford. She stood next to him as he tried. Again and again he would open his mouth, bring his hand up to his mouth, and become paralyzed with fear. He cried hysterically. “He was petriﬁed that what we were asking him to do was going to kill him,” she says.
The team of clinicians surrounding him did their best to encourage and calm him. Saxena reassured him that she was highly trained to manage allergic reactions, that she trusted in the medications, and that even if he did have an allergic reaction, that did not mean he would die.
The child eventually ate the M&M and had no reaction. He wasn’t allergic. A doctor had interpreted a blood test years earlier as indicating an allergy, but the child had never tried eating a peanut. He’d lived the ﬁrst 11 years of his life believing he had an allergy that in fact he did not. But although the memory remains a vivid one for Saxena, it would turn out to be not all that unusual. That paralyzing grip of fear was something she would encounter repeatedly as she ushered patients through food allergy tests and treatments.
Food allergy is stressful, to state the obvious. From the ﬁrst time a child’s lips swell or skin becomes dotted with hives, the fear of allergic reactions hovers just under the surface of daily life. It reaches up when a birthday invitation arrives and on school ﬁeld trips. It intrudes into playdates, teenage movie outings, and ﬁrst kisses. It makes parents overprotective and sometimes makes children panic. Growing up with food allergy often means moving through many psychological phases, from paralyzing paranoia to rebellious recklessness.
Food Allergy Anxiety
The psychological burden of food allergy expresses itself in a multitude of ways. Jeanne Herzog, PhD, a Wisconsin-based psychologist who works often with food allergy families, notes that not all anxiety is bad. A little bit can keep us alert to danger or make us aware that something isn’t right, whether internally or externally. When it comes to food allergy, anxiety can help a person stick to the rules for avoiding exposure. But it’s good to know the signs of anxiety overload. Children may develop psychosomatic allergy symptoms, for example. They may cry or feel inexplicably tired. They may withdraw or become prickly. They may pick ﬁghts, or as Herzog notes, try to get attention in ways that seem unhealthy.
Of course, behavior changes with age. Through age 6, children often mirror their parents’ emotions, says Herzog, discovering their own independent feelings only starting at around age 7, which is also when the world outside their family starts to become important. As teenagers, children are often better able to express their feelings with some level of maturity, though this takes time and moves at different speeds for different children. Herzog also recommends that parents look through different lenses—emotional, social, and cognitive—to understand their children, as each of these follows its own development journey.
Marté Matthews, a consulting therapist at Stanford University, meets often with food allergy families participating in immunotherapy studies and in her private practice. She cautions that children with food allergy can sometimes develop complicated and problematic eating habits. She draws a distinction between feeding disorders and eating disorders. The latter category includes familiar issues such as anorexia and bulimia, which are often characterized by a misperception of how the body looks. Feeding disorders having nothing to do with looks. Rather, says Matthews, “there’s a misperception of a food as being dangerous or disgusting.” Food allergy anxieties may manifest as feeding disorders, a link Matthews has seen many times over. Restricting foods beyond what is necessary is the most common situation she sees. That behavior can also make parents understandably impatient because, says Matthews, “it feels exaggerated or out of proportion.” That parent-child dynamic then becomes its own stressful situation.
Monitoring Anxiety in People with Food Allergies: What to Watch For
- Overly restrictive eating
- Refusal to participate in social activities
- Withdrawn, fearful, clingy, or sad
- Lack of interest in hobbies or friends
- Angry, acting out, being aggressive, and misbehaving
- Sleep problems: too much, not enough, awake in the middle of the night, and/or frequent nightmares
Families coping with food allergy need to stay vigilant, strong, and well-informed. The condition presents its fair share of challenges, which makes for a courageous and heroic demographic. And prevailing over the difﬁculties, whatever they may be, makes it that much easier for the next person.
How to Help Someone with Food Allergy
Improvements in our understanding of anxiety have led to accompanying improvements in how we deal with it. We know better coping mechanisms and we teach them to others, including schoolchildren. Mindfulness, breathing techniques, and other methods for calming anxieties are often taught in schools to help students monitor and manage their emotions better. As Jeanne Herzog puts it, “knowing what it feels like in our bodies and knowing what our thinking pro- cess is when we’re anxious or depressed” are the types of awareness that teachers and mental health professionals who work with children now encourage.
But the emotional burden of food allergy calls for some speciﬁc tools. As described above, young children may be faced with social exclusion or the stigma of having to sit at the nut-free table. Older children become aware of the potential for dying as a result of accidental exposure. All people with food allergy live with the feeling of not having complete control over their safety. As Herzog explains, bullying, feeling left out, vulnerability, and all the other issues speciﬁc to food allergy have ramiﬁcations. Often, says Herzog, the result is that children with food allergy grow up faster. “They have to learn how to cope. Otherwise they will curl up in a ball and not be able to function.”
Herzog has worked with families to create what she calls emotional safety plans. These plans include coping mechanisms similar to those often recommended for anxiety, such as mind-body methods and cognitive behavioral therapy, tailored to the unique strains of food allergy. Herzog works with families to accept the challenge of the condition bravely, to empower children with knowledge, to seek support, and to ﬁnd balance. Her safety plan for young children and teenagers includes several recommendations, including:
- Learn and follow your emergency care plan.
- Tell others about what your food allergy means to you.
- Be aware of your feelings so they protect you, not hinder you.
- Calm your thoughts.
- Calm your body with strategies.
- Learn all you can about yourself. Your allergy is only one thing about you.
For adults with food allergy, her advice is similar and adds:
- Create your normal lifestyle.
- Find your people.
- Seek support when necessary.
The typical recommendations for quelling anxiety may seem simplistic, but they work. And they are easy to teach children so that they can reach for these tools on their own. Herzog believes children with food allergy should learn how to calm themselves down and has several suggestions for doing so:
- Have a drink of water.
- Get some fresh air.
- Listen to music.
- Pet the cat or dog, if you have one.
- Ask for a hug from someone you trust.
Parents can help calm their children using gentle touch. Belly breathing—a form of deep breathing that contracts the diaphragm, which is located between the thoracic cavity and the abdominal cavity—can also help. This technique, also called diaphragmatic breathing, can slow the heartbeat and lower blood pressure. Herzog suggests some other practical ideas:
- Keep track of successes by writing them down.
- Create an incentive plan to help children try new foods when they are feeling fearful or resistant.
- Have a safety checklist that children can review before choosing a food to help them feel secure during meals outside the home.
- To help relieve anxiety, make relaxation a family activity.
Safety Checklist for Food-Allergic Patients Dining at Restaurants
- Can the server assure me that my allergens are no in the food I am ordering?
- Are there any ingredients that come from packaged foods in this dish?
- Have I had this food before?
- Have I eaten at this restaurant before ?
- Are the grown-ups I am with aware of my food allergy?
- Do I have epinephrine with me, and is there someone who knows how to inject it in case of an emergency?
- Is the restaurant interested in ensuring that food allergens a e accurately labeled on the menu?
Knowing your support team can also make a huge difference to children. With so many unknowns, it can help to be certain of who they can rely on to take their food allergy seriously. Some studies have found that children are more fearful of people who don’t care about their allergy than they are of the actual allergens, notes Herzog. The anxiety is exacerbated because the risk of exposure seems higher when the people you’re around seem to be either uncaring or unaware. The family of Andy Hartman’s best friend when he was growing up decided to keep a nut-free home because he was there so much. “I surrounded myself with people who were so willing to help,” he says. He wrestled with feeling that he was a burden to the people who went out of their way to keep him safe, but he also knows what a difference those efforts made to his childhood. Herzog suggests that children tell their peers not only that they have a food allergy but also how it feels to live with a food allergy. And although she says ﬁnding others with food allergy in your community can provide an enormous sense of support, she also emphasizes the importance of raising awareness outside of the food allergy community. “Advocate for yourself,” she says, “so others can be aware and care.”
Instilling a long-term view is also a good idea. For Matthew Friend, now 21, food allergy is still part of his life even though he’s become desensitized through immunotherapy. An aspiring come- dian, he incorporates his childhood experience with a wheat allergy into his routine. He remembers disliking cheese as a child and likes to joke with his audience that whenever he wanted food that wasn’t safe for him, his mother would just tell him it had cheese in it. And having to ask a girl to brush her teeth before they kissed was, he says, “the perfect way to ensure amazing breath.”
Republished with permission from THE END OF FOOD ALLERGY by Kari Nadeau, MD, PhD, and Sloan Barnett, to be published September 25, 2020 by Avery, an imprint of Penguin Group, a division of Penguin Random House, LLC. Copyright © 2020 Kari Nadeau, MD, PhD, and Sloan Barnett
This excerpt was featured in the September 27, 2020 edition of The Sunday Paper. The Sunday Paper publishes News and Views that Rise Above the Noise and Inspires Hearts and Minds. To get The Sunday Paper delivered to your inbox each Sunday morning for free, click here to subscribe.