What Does it Feels Like to Live with Food Allergies?

If you don’t have food allergies, it’s hard to fully understand what it’s truly like to live with them.  Even as the parent of a food allergic child, I sometimes forget how hard it is to face this life threatening and socially stigmatizing disease every day.


On Monday morning, all it took was french toast to remind me.


My husband had gotten all the kids dressed and ready and ushered them to our favorite breakfast spot in town.  By the time I met them, everyone had ordered and was eagerly awaiting their meal.  My oldest son – who is allergic to peanuts, tree nuts, sesame seeds and dairy – departed from his usual breakfast and ordered french toast.  He loves french toast – especially the kind with cinnamon sprinkled into the batter.  We almost always have to custom order this: first looking to see if the bread is safe, double checking that there is no milk in the egg batter, then asking the kitchen not to use butter in the pan (or to use non-dairy margarine).


Although they are both very good at ensuring a safe meal, I couldn’t help but ask my husband and son if all of the proper questions were asked when his meal arrived.  Because my son had ordered french toast all summer – at a similar, but different, restaurant – they had totally forgotten.


No problem!  My son held his fork as I flagged down the waitress.  “Can you grab the ingredient list of the bread in this french toast? My son had multiple food allergies.”  Unfortunately – as in many restaurants – there was no ingredient list.  The bread had come from a supplier and the ingredients were not listed on the packaging.  Even if everything else was safe, this meant the meal was a no-go.  The possibility of dairy or sesame, in particular, made this entire meal a risk not worth taking.


The reaction was immediate.  My son, a mature 11 year old, slumped into the corner of the booth and looked at the wall sullenly.  Disappointed isn’t a word that covered it.  Defeated.  Gently and with a lot of love, I repeated to him that he is my most precious gift and there was no way I would take a risk just for, in this case, french toast.  I offered every alternative on the menu.  I told him I’d head home that moment and make a big batch of my world famous french toast.  He remained ashen and silent and just shook his head no.  And, though I tried to give him space, I watched heartbroken as a tear rolled down his cheek.


Sometimes, it just takes a small thing, like french toast, to bring all those buried feelings of rejection, disappointment, and injustice to the surface.  It’s HARD having food allergies.  It’s hard not having the freedom to choose what you’d like.  It’s hard to watch others jump in excitement over a class treat/birthday cake/ice cream truck you cannot have.  It’s extremely hard to live both yearning for the ability to eat anything you want and fearing what will happen if you accidentally took one wrong bite.  It’s hard enough being a kid – nonetheless one who must have the composure and control to keep him or herself safe all the time.


In a moment of real clarity months ago, my son articulated what it’s like to have food allergies.  “It feels like you’re in detention for something you didn’t do.  Like you need to stay home doing homework while you miss the class trip to the water park.”  Having food allergies, can sometimes, feel like you’re being punished for no reason.


But surprisingly, having food allergies is not all rain showers.  On more than one occasion, my son has pointed out that he is who he is because of his food allergies.  They have made him resilient and patient.  They have taught him to be empowered and bold.  They have highlighted our family’s support for him and made him grateful for good friends and the extraordinary lengths they go to include him.  And, at times, food allergies have even made him feel special.


So, what does it feel like to have food allergies?   It appears to be different day to day.  As a parent, it may be impossible to protect our children from experiencing all the emotions that go along with growing up with a food allergy.  But as long as we maintain an open line of communication, provide a safe environment for our kids to express their thoughts and emotions, and continue to try t0 empathize, we can help make sense of whatever they’re feeling and keep them on the path towards growing into confident, healthy adults.



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