I learned a lot about allergies when my husband was first diagnosed. I don’t remember what I googled first. Maybe it was about EOE, or maybe it was when to use an EpiPen. Eventually, I found the Food Allergy Research and Education (FARE) website, which lead me to the Utah Food Allergy Network (UFAN). I learned a lot from those resources, and then I found a whole community of people dealing with the same things we deal with in their own individual way.
As I think back to our time before food allergies, there are a few things I realize that I didn’t know anything about. First, that anaphylaxis can happen for any kind of allergy no matter if you’ve had a reaction before or not. Second, allergic reactions can be different every single time. And, third, people who do NOT have allergies do NOT take them seriously.
Anaphylaxis is Always a Possibility
When I say anaphylaxis, please think “possible death.” Thanks to epinephrine auto-injectors, it’s not guaranteed, but they don’t save lives 100 percent of the time. Much of the time, we’ll have mild reactions like an upset stomach or itchy mouth. Sometimes it’ll get a little more intense with nausea and vomiting or a drop in blood pressure. All by themselves, these reactions do not make anaphylaxis, but when combined, your body can shut down.
Some symptoms by themselves indicate anaphylaxis. These are tightening of the throat, difficulty swallowing or breathing, or a hacking cough, chest pain or tightness, low blood pressure, shock, pale blue color, dizziness or fainting, and a lack of energy.
Mild symptoms, when combined can indicate anaphylaxis. These include an itching or swelling of your mouth or lips, digestive problems (stomach pain, nausea, vomiting, and diarrhea), anxiety, panic, runny or stuffy nose, sneezing, watery, itchy, or swollen eyes, and hives or redness on the skin.
When we used my husband’s Auvi-Q for the first time, we weren’t entirely sure that he was having an anaphylactic reaction. All we knew was that he had just received medication that contained eggs (which he had received many times before) to put him out for a routine endoscopy, and he wasn’t recovering well from it. He had intense stomach pains, very little energy, and was paler than his usual pasty white.
I finally decided that it was worth administering the epinephrine even if it meant returning to the hospital to monitor his symptoms. As we drove back to the hospital, he administered the epinephrine through his jeans. Instantly, the color returned to his face, and he became talkative. I realized that I had never seen my husband look this healthy before.
Different Reactions – Same Allergens
A lot of the time, when you have an allergic reaction, it’s the same kind of reaction that you’ve had before. That’s how you learn to recognize that you’re having an allergic reaction and not something else. But they don’t always stay the same. One time you can have itchy, watery eyes and a runny nose. Another time, you can have a stomach ache and diarrhea. People with allergies live in constant fear that even though they’ve never gone into anaphylaxis, they could.
So many factors play into what kind of reaction someone could have at any given moment. Environmental allergies could be high so that any contact with food allergies sets them off. They could already have a cold, made worse by accidentally consuming an allergen. Or, nothing could be different than any other time before, but their body decided that this was the time to bring out the big guns and really take out that “attacker” (the allergen). We never know exactly what kind of reaction we’re going to have when we react.
Non-Allergic People Don’t Take Allergies Seriously
A child with food allergies is twice as likely to be bullied compared to a child without a medical condition. Since my husband was an adult when diagnosed, it’s not quite as bad, but I was surprised when people questioned the diagnosis and then questioned whether or not the treatment plan of not eating his allergens was necessary.
We went to our family doctor to figure out why my husband couldn’t swallow food. He referred us to a gastroenterologist, who finally gave the diagnosis of EOE. Then our family doctor informed us that my husband needed to do allergy testing because EOE and allergies go hand in hand. So, we went to an allergist and did a skin prick test and then a blood test to confirm what his allergens were. All of these are medical professionals, with M.D. at the end of their names.
Allergy advocates have an awareness month to help spread knowledge about this disease. So that people can find a way to demonstrate empathy for us. It would be great if we could get the mainstream media attention that portrayed us as humans with individual needs just like the rest of the world, but they seem to prefer making fun of us.
However, one of my favorite media moments that showed the reality of allergies comes from the show Heartland, Season 4, Episode 8. In the scene, a teen, Badger, gets stung by a bee, swells up, and passes out, going into anaphylactic shock. Another teen, Jake, who is also allergic to bees, finds him and immediately administers an EpiPen, which saves his life.
What’s not shown is how they should have called 911 immediately and taken him to the emergency room, but I appreciated that they showed how you don’t have to have an allergy diagnosis to go into anaphylactic shock. For this reason, I don’t understand why epinephrine auto-injectors aren’t over the counter and why they aren’t as ubiquitous as defibrillators and fire extinguishers in public buildings.