In short, says Sicherer, if it’s limiting the patient’s quality of life, it’s a concern. For example, if malnutrition becomes a risk or a patient’s job is affected, or if parents don’t allow their kids to socialize or are home-schooling them simply because they are afraid of possible reactions, they may be giving fear too much control.
“I tell my patients with food allergies to do the same things that everyone else does, except eat the food they’re allergic to,” he says. It is important to emphasize that this is a potentially life-threatening condition, he adds, but it shouldn’t be the topic of every conversation.
“I tell families to think of their child as a child and not as a food allergy, and to give positive reinforcement for the normal things they accomplish.”
Knowledge and support are two of the best antidotes to fear. Sicherer finds some patients’ concerns are rooted in misunderstandings about how allergies work, what can and can’t trigger reactions and what’s necessary to prevent them.
Of course, many patients understand their allergies all too well – and if their anxieties become consuming, Sicherer suggests they see a counselor, psychologist or psychiatrist who specializes in the treatment of anxiety or post-traumatic stress.
There, they can learn strategies to cope with their anxiety, from relaxation techniques to ways of stemming the tide of mental worst-case scenarios that make them afraid to eat, to socialize and, sometimes, to leave their homes.
For instance, Cochrane will encourage a patient to practice conjuring up a memory that’s rich with vivid details. Then, when the patient feels the early rumblings of panic, she can absorb herself in that memory rather than the anxiety, and dissipate the emotional tornado before it gains momentum. For many, even talking about their fears can be a big help.
In Lee’s case, finding a good allergist who took the time to address her concerns was the first step. A support group was also hugely beneficial, and came with an unexpected bonus: her son became the best friend of the son of another member, and the two boys provided support for each other.
And when Aaron was in the throes of anxiety, Lee used a tool she picked up in a teacher training course about autism: the social story.
“I made him his own little book that said, ‘My name is Aaron and I have a peanut allergy. And sometimes it makes me afraid, but when I get afraid, I know there are things I can do,’” recounts Lee, who included coping mechanisms in the book, such as talking to his mom or his best friend and doing relaxation exercises.
“It also said, ‘I’ve only had three reactions in my life, so the chances that I will have a reaction are very, very small. And if I do have a reaction, I have an EpiPen. And I will be a superhero who protects myself – Super Aaron,’” she says with a laugh. “He used to read it over and over. I think it really helped.” Today, Aaron is an active, energetic 9-year-old who loves football, practical jokes and scary movies.
WITH SOME help from a support group and a therapist, Sandra Schwartz has also come a long way since she was sitting panicked in that Northern Ontario parking lot. While the specter of another anaphylactic reaction still looms large, she has significantly expanded her diet, eats out in restaurants that she knows are safe, and is doing more socializing. But Schwartz firmly believes that family doctors and allergists need to pay much more attention to the emotional effects of the diagnoses they are giving to their patients.
“No one explains the psychological impact and what kind of help might be out there,” she says. “That I had to seek on my own, and I think that’s a huge, huge gap in dealing with food allergies.”
Sicherer emphasizes that when it comes to the emotional side of food allergies, it’s absolutely normal to have ups and downs, and even to feel overwhelmed once in a while. For that reason, he advises people to speak with their allergists about what they should and shouldn’t worry about. If anxiety continues to consume them, there is help available. “This is a life-changing illness, but it doesn’t have to strangle you,” he says. “People live very successfully with this.”
While overcoming fear is far from easy, Cochrane notes that the health benefits – as well as the sense of personal achievement – make it worthwhile. “It’s the feeling that you have faced the lion and handled it.”
In the past couple of years, Schwartz has faced that lion hundreds of times. She still has days when she feels frustrated and afraid, but with each one that passes without a major reaction, and with each food that she safely reintroduces, she feels more in control.
“I still have anxiety every time I go out to eat. I still have anxiety if I eat something new at home. I still have anxiety when I go over to a friend’s place and I know they’re serving shellfish,” she says. “But I’m not going to let that stop me. I just have to live life.”
This article was originally published in Allergic Living magazine in 2007.