I write to you today because I love you!
You are kind and understanding. Yet I hesitate to write this because experience has taught me that even the kindest people sometimes struggle to fully grasp what I am about to share.
You see, I am not just a mom; I am a food allergy mom.
And that comes with a tremendous amount of constant care you can’t truly understand until you hold the title.
“Food allergy mom” was not a line item that I ever expected to add to my life’s resume … but here I am.
Why does this matter?
How we treat each other matters. Without being aware that I live with food allergies and what that looks like, it might cause friction in our daily interactions.
Sharing this part of my life with you will help us to strengthen our accord.
Your benefit: a deeper understanding of my life and an opportunity to act with compassion.
My benefit: being fully seen and loved in a reality where simple food is life-threatening to my child.
You can’t know what you don’t know. I get that … It would be unreasonable for me to expect you to be aware and understanding of food allergies when you have never truly been exposed to their reality.
So here is a glimpse of reality …
It is learning how to read labels … every single time you purchase a product.
It is knowing that sometimes milk is not called milk or that a company doesn’t have to disclose sesame oil in a product as long as the ingredients say natural flavors.
It is spending hours in a grocery store and coming out with no new food options
It’s about learning all the places food proteins hide. Because they commonly exist in non-food products. That means hand soaps, art supplies, makeup, beard oil, house cleaner, toothpaste, to name a few.
It is countless hours with doctors looking at test results that can’t tell you the severity of a potential reaction because the test only measures how likely it is that a reaction would occur.
It is scouring the internet at all hours of the night looking for answers.
It is learning how to cook again and rethinking all your habits in the kitchen because a single mistake can lead to cross-contact making food unsafe, even life-threatening.
It’s trying to inform your family, friends, co-workers, teachers what your needs are, making sure to be clear and accurate, without scaring them but without coming across as crazy and overbearing.
It is about kindly speaking up to educate someone when all you want to do is scream, “what are you doing?! that could kill my child!”
It is learning the many ways anaphylaxis looks and how to respond when the day comes that you see it.
It is finding accessible and affordable epinephrine, the medication that saves lives.
It is praying that you never have to use it.
It is about NEVER leaving home empty-handed. But instead with bags of stuff: auto-injectors, antihistamine, inhalers, wipes, extra clothes, and food!
It is about always mitigating risk. At the park, the library, the museum, the family picnic, the birthday party, the bus, the baseball game, the grocery store (literally everywhere)
It is about teaching my child to be aware of and respect his allergies. To advocate and speak up. Without making him scared, anxious, or feel less than and left out.
It’s about finding people who understand food allergy life and cherishing them.
It is about finding a place between fear and complacency so you can live life but maintain a level of protection.
It is about all of these things and SO MUCH MORE.
I often operate in the space of fear and anxiety, which is why sometimes I come across as unreasonable, overprotective, and maybe even a little crazy.
I spend a lot of energy pushing outside that fear because it is the only way to experience life. But some days it’s harder than others.
I hope you can empathize with the care it takes and the anxiety that comes with managing food allergies.
And maybe you value me enough to be mindful of your words and actions …
Here are 2 simple ways to accomplish that:
Don’t assume …
That this is a lifestyle choice, it has changed our lifestyle, but it was not a choice.
That a small amount of the allergen is okay, it’s NOT. Even trace amounts of food protein can trigger anaphylaxis.
That because you read a news headline you’re informed. Food allergies are multi-faceted. I promise it is more complicated than the headline. (I will know immediately if you actually read the body of the article)
Food allergies are the same as an intolerance … they are not!
That you need to suggest ideas to help. I know your desire to offer solutions is coming from a good place, but it just makes me feel more isolated.
Ask questions …
Can I do anything to make things safer for you?
Where do you keep your auto-injector? Can you show me how to use it?
Would you like to pick the restaurant?
Do you have any treatment options?
Where can I get useful information about food allergies?
Are you okay?
This is a lot to take in! It probably feels like too much … at least that’s how I felt when I found out I was a food allergy mom.
With time and practice, it feels more manageable.
Food allergies will always require extra care, but one day you will look up and realize you automatically account for them. With no cure at this time and anaphylactic episodes on the rise, your awareness and compassion are more important than I can express.
I sincerely hope this has not scared you away. In fact, quite the opposite!
I shared this to provide perspective to empower you as you encounter food allergies and anaphylaxis.
Now you have the information it’s your choice how to use it.
With love and gratitude,
An allergy mom