What it’s like to have anaphylactic allergies

The doctors say I have the trifecta- food allergies, eczema and asthma. I’ve always wanted to be a triple threat, so at least I have that going for me. I had my first allergic reaction at 6 months, my most recent reaction 2 days ago, and there are probably plenty more reactions to come. Most of the time, it feels like no big deal. I get a little itchy here and there, I cook a lot more than others, I say I’m not hungry when I’m out to dinner with friends, I watch what my date eats before accepting a kiss goodnight, I make it work. But then, just when I feel like I have a handle on things, BAM, something goes wrong. Maybe a waiter doesn’t take my allergies seriously, maybe a friend goes out of their way to cook me a meal but misses an ingredient, maybe the ingredients change on my favorite food, maybe a bee stings me (and the list goes on). It happens again, then for months, my allergies feel like the most important thing in my world. When you spend the night fighting to breathe, wondering if this is the one, if this is the reaction that’s going to kill you, you realize how terrifying your allergies actually are. You realize how insanely stupid you can be and how fragile life is. You realize how much space your allergies take up in your life, how little control you have and how much you need to depend on others.

When I was little, I didn’t have the words to express what it felt like to have an anaphylactic allergic reaction. I didn’t understand that not everyone knows what it feels like to not be able to breathe, not everyone understands the amount of time your allergies take up everyday, or how much of a burden you feel to those around you. But I’m older now, and lucky for me I did not grow out of any of my allergies which gives me the opportunity to use my voice. So, for the little ones out there who can’t, I’m going to try to explain to those in the food industry, to those with friends or sisters or partners with anaphylaxis allergies, or just to those who are interested, what it’s like and how you can do better.

I was at a BBQ this past Saturday surrounded by family, playing with my niece and nephews. My adorable niece asked me to pick her an apple from an apple tree. I reached up and grabbed it. Instantly I felt a sharp pain in my finger and realized I had gotten stung by the stupid little bee she named “Joe”. I’ve only ever been stung once before when I was 8. I barely remember the reaction but I know it was severe. I know I tested positive for an allergy to bees, but it had been so long, so I thought maybe I grew out of it. I didn’t want to scare my niece so I stayed calm, threw my finger under cold water and went about the BBQ. While I may have seemed calm on the outside, internally my mind was racing. I was checking in on my breathing, I was feeling my pulse, I was rubbing my hands against my stomach and back to feel for hives. All seemed okay. What a relief. About a half hour passed and we sat down at the dinner table. But as I sat down, I started to feel my tongue. You see you don’t usually notice your tongue until you think about it, or until it is twice its size. I didn’t want it to be true. I got quiet. I stopped moving, and I starting counting my breaths. 5 minutes later, I turned to my sister in law and told her I needed to leave. I wasn’t sure how severe the reaction was going to be. Maybe I could take some Benadryl and my inhaler and sleep it off. Maybe I’d throw up a few times and I’d be okay. Maybe it’s in my head. Maybe I’m just panicking. Then I looked over at my sister in law and saw the fear in her eyes. It wasn’t in my head, it wasn’t going to get better, it was happening, and it was happening fast.

We pulled up to my sister in laws house and I ran to the bathroom. I puked three times. The puking made it so much harder to breathe. I was trying to relax. I laid on the floor and held my stomach tight. It was getting harder and harder to breathe and every inch of my body was itchy. Then, I realized I could no longer breathe from my nose. That’s when I knew I needed to get nervous. I could feel my glands. They felt like they were touching each other. My eyes closed over, my ears blew up twice their size, and the swelling in my throat would not stop. I started getting dizzy and there was tingling in my feet and hands. It was then that I decided to rush to the hospital. Now many of you might be asking, why didn’t you take your Epipen? See that’s a great question, and it was the same question every nurse and doctor asked me when I got to the hospital. The answer is because I was scared. I was scared to stab myself in the thigh. I was hanging on to every hope that the 4 Benadryl and 8 puffs of my inhaler would work. But I was wrong. And I know that now, and that’s not the point of this article, so let’s move on. (Although I will add, if there are any moms or dads out there with kids with anaphylaxis allergies, teach them to not be scared, sign them up for a training, introduce them to other kids with similar allergies.. I digress)

About 20 minutes later, we pull up to the hospital. I looked terrifying. I mean actually terrifying. My eyes were completely swollen over, my lips were the size of all three Kardashian sisters lips put together, and I was keeled over from stomach pains. To top it all off, I was panicking. It was hard to breathe and because it was hard to breathe, I was having a hard time getting myself to breathe. Luckily, my nurse was amazing. She told me it would be okay. She held my hand. She took deep breaths with me as the tears poured down my face. She quickly threw an IV in my arm, hooked me up to oxygen and before I knew it, my lungs started to release. From there, I was given all the usual drugs, prednisone, epinephrine, anti-nausea medication, Benadryl etc. I was monitored for 6 hours, and then, like nothing happened, I was able to go home. Except, a lot had happened. And I would feel and see the aftereffects in and on my body for days.

I sit here now recovering. My body aches, my throat is sore, my skin feels raw and I am emotionally, mentally and physically exhausted. My body will heal in a few days, but it’ll take my mind a while to recover. For some time, I won’t eat out and I’ll stay home more than usual. I’ll feel grateful for my body and I’ll make smart and safe choices. But time will pass, and I will get sick of my restrictions. I will get comfortable again. I will put my trust in the wrong person and the whole cycle will happen again. But that’s not my fault. That’s just the reality of living with anaphylactic food allergies and I mean truly living, because I refuse to do anything less.

I’m 26 years old and I can’t count how many times I’ve been to the hospital and/or had a severe allergic reaction. The sad truth is that most of those reactions were not because of bee stings. Most of them were very, very avoidable. They were due to carelessness or a lack of awareness of food allergies. They were the consequence of a waiter, waitress, or chef thinking that I’m being healthy or I’m vegan or I’m lactose intolerant or just being an “American”. And how can you blame them? More times than not, the people that tell them they have food allergies DON’T. They have dietary preferences or intolerances that will not kill them. And if you’re that person, if you’re the person that says you have food allergies when you don’t, know that you are making it SO much harder for those who do. And while I do not blame those of you in the food industry for that, I do blame you for rolling your eyes at me. I do blame you for telling me there is nothing you can do for me. I do blame you for making me feel small and embarrassed and shameful of who I am. I am not an annoyance. I am not a difficult customer. Trust me, it is way harder for me than it is for you. I am literally putting my life in your hands. Please do not take that lightly. And for the love of god stop saying you cannot accommodate me. I promise if you learned, if you tried, you could. The question is, are you willing?

Lastly, to friends, families, loved ones of those with anaphylactic allergies, we will never not feel like a burden. We will always want to feel normal. We appreciate everything you do and all the ways you accommodate us. We know how severe our allergies are. We are doing our best. We are scared all the time, but we will be okay and we are stronger for it.