CW: mention of allergic reactions, anaphylaxis, and allergy deaths
Food Allergy Awareness Week is May 13-19, and I'd like to share what that means to me.
I am an adult with food allergies. I parent two kids with food allergies. My life partner is someone with food allergies as well as Celiac Disease. I have friends with food allergies. I own and operate a small business that seeks to meet the needs of the food allergy community. Whew! I am living that food allergy life!
I know the daily preoccupation with food. The discomfort and pain of an allergic reaction in my own body. I weigh the cost of possible medical care with my current loss of freedom. Do I spend more money on testing, or just keep avoiding my allergens, and continue feeling ostracized at gatherings? Will I ever feel safe dining out again? Let anyone else cook for me? What’s the appropriate amount of risk for me? What will my next reaction be like?
I look at clothing with pockets in mind- "Will an Auvi-q fit comfortably in there? Will two?" Oh, and I just turned 40, and suddenly need bifocals to scour labels, so that's fun. Food allergy fashion and function sense!
I know the focused drive to action when witnessing an allergic reaction in someone I love. “Do I inject them or not? Is this the time? Is this it?”
I know the confusion of allergy testing. The courage for food challenges. Watching my kids’ skin to see if hives pop up. Watching their faces for panic. Watching their chests move.
I initiate conversations about things I never thought I would. I mean, of course we talk about safe sex, consent, and emotional responsibility, but allergy-safe kissing? Good gracious. We discuss way more than I ever planned. I just want them to stay safe and alive, but also be in deep connection with others, and fully engaged with the world.
I am doing my best to transfer the power of life-preservation into my kids’ hands, which is akin to letting go of handle bars, except much more weighted. There are no safe sidewalks here, just a world full of food-centric spaces and events, miseducated, or uneducated food service workers, and companies who see profits over people.
I’m not entirely rocking allergy parenthood, but damn, I am trying. There’s a lot of guilt and shame in this arena. I hear it in myself and in the experiences of other food allergy moms. We are judged for being too careful, or too neglectful. We wonder if it is our fault. We are weary from caution and worry. Our advocacy work is unseen and unrecognized. We’re all in this together but we are often too burnt out to connect. Sigh. Doing our best!
I know more names for milk and corn and seeds than I ever thought I would. The constant research, calls to companies, and the delicate communication required to elicit the most transparent answers from those who don't want to get their hands dirty with our community's vulnerability.
I read about every tragic loss of life due to food allergies. I remember each name, and which allergen was responsible, and what series of circumstances contributed to their deaths. My legs shake and I find myself never wanting to cook for anyone, or bake for anyone ever again. It takes effort to find my resolve again. I seek more knowledge, and bolster my food handling and management training.
Each time I hand over a cake to a food allergy parent or individual I am leaning into vulnerability, finding footing upon my experience and education.
Living life as an adult with food allergies takes courage. Parenting kids with food allergies takes courage. Being in relationships with people who have food allergies takes courage. Doing work for those in the food allergy community takes courage. I choose courage every day, and I know you do, too.
This is what Food Allergy Awareness Week means to me- shining a light on my daily challenges, my convictions, and my choices. I want people to know they aren’t alone. I am with you. I’m signing off with links to my favorite food allergy resources and blogs. Thank you for reading, and please feel free to like, share, and comment. What does Food Allergy Awareness Week mean to you?