I write to you today because I love you! I feel hopeful that we can deepen our bond as I share with you a huge part of my life.
At this point in our relationship, I believe that you have the capacity to be kind, understanding and loving. I believe that learning is important to you because it gives you a chance to be better, to do better.
Here goes …
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 we are.
Are you asking yourself, how does this affect me? Why does this matter?
… I thought so.
Contrary to popular cultural belief, we live on this earth together therefore how we treat each other matters. And without being aware that I live with food allergies, and what that looks like, you can not possibly treat me with compassion.
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 a simple food is life-threatening.
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 the reality of living with food allergies …
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 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. Rethinking all your habits in the kitchen because a single mistake can lead to cross-contact making food unsafe, even life-threatening.
It is learning the many ways anaphylaxis presents 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’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 constantly managing 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 is about NEVER leaving home empty-handed. But rather with bags of stuff: auto-injectors, antihistamine, inhalers, wipes, extra clothes, and food!
It’s about finding people who actually 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 kindly speaking up to educate someone when all you want to do is scream “what are you doing?!? that could kill my child!”
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 about all of these things and SO MUCH MORE.
Caring for a food allergy child is all-consuming and exhausting. I often operate in a 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 from managing life with food allergies.
And just 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 a small amount of the allergen is okay, it is NOT. Even trace amounts can trigger anaphylaxis
- That because you read a news headline, you’re informed. Food allergies are multi-faceted and I promise it is more complex than the headline. (I will know immediately if you actually read the body of the article)
- That food allergies are the same as an intolerance … they are not!
- That your suggestions would be helpful. I promise you I have tried them all!!!
- 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 good information about food allergies
- Are you okay?
I know 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.
But I promise with time it feels easier.
Food allergies will always require extra care but one day you will look up and realize you just 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 deeply 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 you use it.
With love and gratitude,
An allergy mom
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