Over the years, I’ve spoken with several parents who have been reluctant to have their children carry auto-injectors due to fears that they would be teased, bullied, or even “traumatized”. Many admitted that there had never been any negative encounters, and that their school communities had been very supportive. I encouraged these parents to try different tactics with their children, which would get the buy-in of the kids. They often came back to update me on their progress, pleased by the fact that, with coaching, their children learned to accept this responsibility, and had not been singled out nor become more fearful because of carrying an auto-injector.

What I’ve come to realize in dealing with my own son, Julian (now 13), is that sometimes it’s us, the parents, who are not ready to have our children accept more responsibility. Why is this? Because we’re fearful that the child may not comply with a rule, or make a mistake, or that someone else will inadvertently put him at risk. But what messages do we send our kids when we don’t allow them to learn for themselves?

On several occasions, I’ve had to take a step back and quell my own fears, as Julian begins to spread his wings. When he was 11, he came home with a note about a two-day trip his Grade 6 class would be taking at the end of the school year. My anxiety spiked as I worried about his readiness to manage on his own, given his multiple food allergies. Although he had stayed over at friends’ homes many times, he was never interested in staying at an overnight camp. This would be a new experience.

I worried about the staff being able to accommodate his allergies, and whether Julian would feel comfortable seeking help. As my blood pressure continued to rise, I came up with the perfect solution: I would go as a parent volunteer. Even though my plan was to ask that he be put in a group with another parent volunteer, Julian was horrified by the idea. It was okay for other parents to attend, just not his parents, and especially not his mother.

Things worked out. While he was away, I managed to calm down with a lot of self-talk: The teachers have been trained, we’ve checked things out with the food services staff, he has his medication with him, and he’s close to a hospital if anything happens. Julian returned bursting with stories about what he had learned and how much fun he had bunking with his friends in a dorm, and how the food services staff went out of their way for him. I was proud of us both – Julian for embracing this new experience with gusto, and me for reaching another milestone with my sanity intact. But what impressed me the most about Julian was what he learned about himself during the trip.

His class had watched a video about the history of the Jesuit priests who had sacrificed their lives in the name of their religion. As it played, his friend Jack whispered: “Julian, you should pray to the saints to get rid of your allergies!” (Apparently, many people had been cured of debilitating diseases after praying to the saints.) Good idea, Julian thought, but then hesitated.

Julian related having this second thought: “Maybe God had put me on Earth to help anaphylactic people. Maybe that was my job.” He reasoned that not having allergies just wouldn’t have the same effect, and wouldn’t be as inspiring. It would be “like Terry Fox running across Canada with two legs and no cancer.” In his head, he said, “Never mind God, I want to keep my allergies.”

While I was learning to let go, my son discovered that maybe it’s not so bad having food allergies, and that perhaps his purpose in life was greater. Now, when I question his ability to take on more responsibility, I think back to his epiphany. Instead of wondering if he’s ready, I tell myself, “He can do it.”

Laurie Harada is Executive Director of Anaphylaxis Canada, www.anaphylaxis.ca.

First published in Allergic Living magazine, Winter 2008
(c) Copyright AGW Publishing Inc.

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IT WASN’T until Sandra Schwartz was on a camping trip in Northern Ontario in August 2005 that she felt the full force of the fear. Just a couple of days earlier, the 36-year-old Ottawa resident had been lying in an emergency room, experiencing her second-ever reaction to shellfish after eating a plate of shrimp.

Unlike the minor reaction she’d had a year before, when she turned red and her face swelled, this one was full-blown anaphylaxis: Schwartz’s entire body turned crimson red and covered in hives, her heart raced as she grew lightheaded and dizzy, and her face swelled beyond recognition. But the food didn’t just set off a dramatic physical response, it also triggered a psychological tidal wave.

“They always talk about that feeling of impending doom, and I had it times 10,” says Schwartz. “The doctors were saying I was OK, but I said, ‘I feel like I’m going to die. Please don’t let me die.’ ”

Though she had yet to realize it, that was the night Schwartz’s fear of food began. The next day, thinking she was well enough to travel, Schwartz left on a planned camping trip with her boyfriend.

As they drove along the increasingly remote highways, the “what ifs” began to creep like tendrils into her psyche: What if I react again? What if medical help can’t get to me on time?

And, because Schwartz had been diagnosed with a shellfish allergy a year earlier, but didn’t understand that she was supposed to avoid it altogether, she had continued to eat shellfish. In fact, only a month before, she had eaten a plate of shrimp without incident.

As a result, she didn’t fully believe that it could have triggered such a massive reaction. That raised another terrifying question: If it wasn’t the shrimp, what was it? Maybe it was fruit. Or wheat. Or something else. Suddenly, every food was suspect, and Schwartz became terrified to eat.

A couple of days later, her panic peaked. “We were in the middle of nowhere, I was chewing a piece of gum, and I started not being able to breathe.” Schwartz thought it was another reaction, so her boyfriend drove full tilt to the next town. Once in the hospital parking lot, Schwartz realized it wasn’t a reaction that she had experienced. It was a major panic attack.

“I just sat crying in the car. That’s when we realized that there’s a real psychological element to this.”

The couple cut the trip short. Still, Schwartz only felt safe eating cereal and pasta. She saw an allergist and got retested (once again, shellfish was the allergen), and tentatively added a few more foods to her diet, but the fear persisted.

By the time she got married three months after that camping trip, Schwartz joked to friends that allergies were the best pre-wedding weight loss plan around. Feeling like every bite was potentially lethal, she had lost over 20 pounds. “Every time I ate, it was like taking a plunge out of an airplane,” she says. “And I wasn’t sure if the parachute was going to open or not.”

Dory Cerny plays Miss Manners for those awkward allergic moments.

Situation: A female aquaintance gives you a gift that includes your allergen, such as chocolate-covered nuts or a food basket full of potentially lethal goodies.

How to Handle: If you don’t know the woman well, just say a gracious thank you and promptly “re-gift”. If it’s from someone you do know well, however, she has no doubt forgotten about your allergy, and is about to be mortified. Thank your friend for the thought, remind her of your allergy and while she slaps herself in the forehead, gently suggest that, as you won’t be able to enjoy this lovely gift, she may want to give it to someone else.

Situation: A relative insists that “a little bit won’t kill you.”

How to Handle: When it comes to family, sometimes subtlety is a lost cause. If your Aunt Tilda’s idea of a “safe” meal for you involves picking the shrimp out of the pasta, gently but firmly lay down the law. Explain that yes, it could kill you and as much as you love spending time with auntie, from now on you’ll come by for tea or invite her instead to your house. That way, you’ll have control over what is served.

Situation: A good friend is so anxious that you will have a reaction that you no longer get invited over or out for dinner.

How to Handle: If friends are uncomfortable preparing meals or eating out with you, take the lead. When going to a dinner party, offer to bring your own food or to eat at home and arrive after dinner, so that you can take part in the social aspects of the evening without putting any burden on your host. When eating out, suggest a restaurant where you know the kitchen or call ahead to someone else’s choice to ensure there is a safe meal option.

Situation: You encounter someone who thinks “allergies are in your head.”

How to Handle: If this is a person you will be in contact with on a regular basis and not just some jerk at a party, you will be forced to offer remedial education. First off, if you’ve had an anaphylactic reaction, you might mention that the doctor running with the epinephrine needle at Emerg. didn’t think you had “psychological issues”. That and the words “life-threatening” usually get taken seriously. Calmly offer to bring by some materials to explain the medical science of allergy and immune system over-response. You can find such materials at the websites of Anaphylaxis Canada, the Allergy/Asthma Information Association, the Food Allergy & Anaphylaxis Network and the Food Allergy Initiative.

Published in Allergic Living magazine.
© Copyright AGW Publishing Inc.

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