Follow Your Action Plan: You Know What You Have to Do

Each year during Food Allergy Awareness Week, we dedicate a day to raise awareness of anaphylaxis, a serious and potentially life-threatening allergic reaction. In this guest blog post, Josephine Schizer of FARE’s Teen Advisory Group recounts her experience with following her emergency action plan, even when a health care provider had different advice. To learn more about how you can help save a life, take FARE’s free online anaphylaxis training, How to Save a Life: Recognizing and Responding to Anaphylaxis.

“Are you okay? Is your throat closing up? Can you breathe?” they ask me. I can breathe, but I’m not okay. I’m having an allergic reaction, and I feel horrible. Plus, I’m terrified. I’m at a summer camp, miles away from the nearest hospital. We just ate lunch. For the last week and a half, the chef has been making safe food especially for me with no problem, but today, something went wrong.

As I ate, my mouth started to itch, always the first sign of a reaction for me. I stopped eating right away, took Benadryl, and told my counselor what was going on. The itching spread to my ears, too – also common for me – and it was getting worse, not better.

My counselor took me to the infirmary to see the camp doctor, and she started asking me questions about my allergies, but I knew that time was of the essence, and she didn’t know my medical history or action plan. My mind was racing, my heart felt like it was beating too fast, and I was really scared.

“So the next step is you take a steroid,” said the doctor, “First antihistamine, then a steroid, then epinephrine.” But I knew that wasn’t right. I knew that according to my action plan, I shouldn’t postpone administering the EpiPen to take a steroid. I knew that my action plan said the next step after Benadryl was epinephrine. I told the doctor this, and she replied, “I was trained to save the EpiPen for the absolute worst reactions.”

I told the doctor I had to call my mom, the only person I trusted to know exactly what to do when I couldn’t think straight myself because of the reaction. I quickly summarized the situation, and following my action plan, she told me what to do.

Exhausted from the medicine and the reaction, I took a nap, while one of my counselors stayed nearby to make sure I was okay. When I woke up, at first, I thought I was feeling better. A few minutes later, though, it got worse, and I knew I had to throw up.

On the phone with my mom again, I started crying when she told me I had to use an EpiPen. I hadn’t used one since I was six years old, and I’d never had to self-administer before. I knew how, of course, and had practiced with a trainer countless times, but in the moment, it was a whole different thing.

“But you’re not having trouble breathing,” my counselors said, “You don’t need an EpiPen.”

“No,” I tried to explain, “My reaction is in more than one system, so it’s an anaphylactic reaction, and my action plan says I need an EpiPen.” I knew I had to do it even though I was scared. My mom stayed on the phone while I pulled the EpiPen out of the case and administered it to my thigh, still weakly sobbing, hands slightly shaking.

~~~

The feeling that I remember most during the reaction was just panic; I know that anxiety and a sense of impending doom are symptoms of an anaphylactic reaction, and it’s hard to know how much of the anxiety was “real” and caused by the circumstances and how much was a symptom of the reaction itself.

During the reaction, my counselor double-checked the ingredients in my food with the chef, but even after checking several times, no one had any idea what I reacted to. They said everything I had eaten should have been safe for me. That was the scariest part – I was afraid to eat the food for days after that, because I never knew what caused my reaction, and I was afraid it could happen again.

The most important lesson that I learned from the reaction was to always trust myself. I knew the important thing was to follow my action plan, and even though I was scared, I was able to do that. Next time, I will have the confidence to use the EpiPen right away without getting confirmation from someone else that I need it.

All too often, people have told me that my reactions can’t possibly be life-threatening if I am able to breathe, but this is most certainly not the case! Fortunately, I’ve never experienced a reaction in which I was unable to breathe, but counter to popular culture representations of allergies, that doesn’t mean I’ve never had an anaphylactic reaction. Anaphylaxis consists of at least one severe symptom (like all-over body hives, or trouble breathing) or milder symptoms that affect two or more body systems (such as the itching and vomiting that I experienced). If you have a reaction that matches this description, never doubt yourself. It’s been drilled into your head countless times. You know what you have to do.