It’s Food Allergy Awareness Week. I know, I know. Another awareness week. What are you supposed to be donating to now, you might ask. But now that I’ve spent a year as an active member of the food allergy community myself, I can guarantee you that families with food allergies don’t care about your money. It really is about awareness, and what we want is your empathy.
Food allergies are a unique health condition in that it takes the entire village to keep the child safe. But as if the gauntlet of physical reactions, doctors’ visits, reading labels, cooking from scratch and the overall anxiety of knowing that something as generally harmless as food could harm or kill your child isn’t enough, there’s more. Almost every family with food allergies that I know also has to contend with a community – extended family, schools, peers – that at best doesn’t understand the daily precautions needed to keep the allergic child safe and at worst, is downright resentful or disbelieving of the child’s condition.
This is the part about being an allergy mom that has surprised me the most. So this week, to promote food allergy awareness, I’m not going to bombard you with statistics. I’m just going to share some insights into being an allergy parent that I hope will inspire empathy in those of you reading this who are not parents of children with allergies. I’ve shared some of my own thoughts and I also asked the members of my Self-Care for Allergy Moms Facebook group to weigh in.
For me, being a food allergy mom is:
…Leaving the store empty handed and in tears the first time you go grocery shopping after your child’s diagnosis because you realize that despite your training as a dietitian, you have no idea how to keep your child safe.
…Driving your child all the way across town and paying extra for a daycare facility that you trust to keep her safe, even though there are closer and cheaper options.
…Questioning yourself daily as to whether you should scrap your career ambitions and stay home with her to ensure that she’s safe (and feeling crazy guilt each time you decide against it).
…Keeping your phone on hand every moment you’re away from your child because you never know when her caregivers will call to tell you that she’s having a reaction.
…Volunteering to make the cookies for your child’s class to decorate during the already crazy holiday season.
…Wondering if you should find a new church because even though you feel at home there, they offer foods containing your child’s allergen and you worry about someone touching your child with contaminated hands or innocently offering her a treat she can’t have.
…Watching your toddler have a meltdown when she sees everyone else enjoying a treat and doesn’t understand why she can’t have one, too.
I have so many more, but I also want to give a voice to the moms in my Facebook group, who shared that being a food allergy mom is:
…Experiencing intense anxiety every time you try a new food because you are praying it won’t be another unexpected anaphylactic reaction. ~Rebecca
…Having shoes on and bags packed when trying new foods because the last time you called 911 you weren’t prepared to rush out. ~Rebecca
…Losing sleep over what to do for school for my son. And he’s only 2! ~Kate
…Saying “look at me!” and “show me your mouth” about 100 times when trying a new food. ~Kate
…Only being able to rely on family that is trustworthy and understands (if you have that, and have it nearby) or a competent adult nanny/sitter (read: more expensive than a teenager) to watch your child. ~Sarah
…Having to make the call if you can leave your child alone at birthday parties or play dates even when they are plenty old enough based on how well you know the adults in charge (do they understand the allergies? Are they willing and able to recognize and handle an emergency?) ~Sarah
…Monitoring or preparing special items for school field trips, class parties, anything at school that involves food. ~Sarah
…If you allow allergens in the home for other family members to consume, the anxiety of diligently monitoring spills, cross contamination, etc. ~Sarah
…Rereading ingredients on foods that are safe, just in case they changed the recipe and reading EVERYTHING even if it appears “safe.” ~Jenai
…Avoiding fun things due to allergies, like playing at Chuck-E-Cheese when you have a tomato allergy. ~Jenai
…Sleepless nights when you’ve tried something new and have them in your bed because you aren’t sure if that’s a hive, a bite, a bump? ~Emory
…Allowing yourself to grieve the loss of the life you “thought” you’d have and then picking up the pieces to figuring out how to live your “new” life….and showing your food allergy kids that it’s okay and healthy for them to do the same. ~Lisa
…Having my heart sink when we go to a food court for a snack and we realize that everything has risks of cross contamination. And we either have popcorn or end up buying some ultra-processed snacks at the supermarket. ~Sandra
…Passing by an ice cream store and having to explain to my son that he can’t have any chocolate ice cream because the scoop is contaminated with the rinsing water due to the pistachio ice cream on the opposite side. ~Sandra
…Keeping a “go bag” of safe snacks to grab in case you need to head out to the ER because you know if you’re stuck there for hours there may not be anything for your child to eat. (This was me last night. Luckily it was just croup.) ~Karen
But it’s not all fear and anxiety. The members of my group also shared some GOOD things they’ve experienced due to life with food allergies! Being a food allergy mom is also:
…Crying happy tears in the middle of a store when I find a new safe treat! ~Kate
…Learning how to use your voice to advocate in positive ways and modeling how to do it for your kids. ~Lisa
…Learning you had skills in the kitchen you never thought you’d be capable of!! ~Lisa
But I’ve been especially moved by hearing how empowered these women have become due to their children’s conditions. Being a food allergy mom is:
…Empowering. I give myself credit where credit is due. I work hard to keep him safe, and I’m pretty good at it. I find this tremendously empowering. ~Jenny
…Motivating. I am motivated to keep trying substitutions for safe meals and baked goods. I’m motivated to work hard at providing a healthy variety of foods. I’m motivated to cook a lot myself instead of eating out. I’m motivated to keep up with research on treatments and options to help my son. ~Rebecca
…Always learning new ways to navigate how to live each phase of life so that you can then teach and empower your kids to do the same as they grow up. ~Lisa
…Being a food allergy mom brings a strength out of you that you didn’t even know you had. ~Michelle (I heart this one!!)
And most of all, I love what they expressed about how incredible it feels to have someone who understands. Being a food allergy mom is:
…Feeling empowered when I find other food allergy moms! ~Kate
…When your favorite words are: “I saved the label so you could read it.” ~Meghan
…Feeling touched when the birthday teenage girl surprises your food allergy daughter by baking her her own safe birthday cake so your daughter feels included. ~Eileen
…Loving when people understand. People who don’t say rude things, or look at your kid like he has three heads when he turns down ice cream, or ask a million questions. There are definitely thoughtful and understanding people out there and I love them for it!! ~Sarah
…Realizing that when someone says to you, “Wow, this sounds like it has been really hard for you,” that that was all you really wanted to hear all along. ~Me
If you’re a member of a family that does deal with food allergies, I hope you’ve found some validation in this post. I’d love to have you in my group Self-Care for Allergy Moms to continue the conversation.
But if you don’t directly deal with food allergies, one: thank you for reading this far!! And two: I hope we’ve inspired you to support the families in your community who do have allergies. Even asking “how can I help?” is a great start!