The often invisible cognitive load of food allergy families involves both time and heartache.
It’s needing to educate staff at childcare or schooling facilities that although lunchbox items may look similar to what other kids eat that varied allergies and intolerances haven’t magically gone away.
There are hours spent at home and with medical support staff planning nutritional intake (and addressing deficits). Special allergy free brands are researched and sought (often involving a substantially higher cost and extra driving time to that one special location that stocks a particular item but nothing else on your allergy list – meaning multiple item specific trips). Hours can be spent researching not just allergy free recipes but in needing to substitute ingredient (x), is there a risk of cross-reactivity from ingredient (y), in which case do you start all over again looking at a different ingredient or consider ingredient (z) as a back up?
Then there’s the extra time spent milling special flours from scratch because it’s too expensive to buy them pre-milled when you’re juggling multiple allergies/intolerances. There’s the time spent cooking and pureeing fruits and vegetables (not to mention washing up afterwards) so that you can make your own customized smoothie pops or home baking that incorporates ‘safe’ foods and ‘safe’ textures. There is the time spent agonizing over whether to make one allergy free meal for everyone or to make multiple meals each night. There is needing to pack food every time you leave the house because you can’t buy anything safe and easy to eat when out.
There is the heart ache of seeing your child sad because their friends have foods that they can’t have; of needing to take a packed lunchbox every time there’s a shared food event at their education facility or church or playdate or birthday party etc… There is the anxiety over trusting food that someone else has made (especially when you find yourself having to quite literally pull that awesome looking food item out of your child’s hands because someone has rushed over in the realization that they gave you the wrong information). For those with anaphylaxis, there is the ongoing anxiety around epi-pens, emergency hospital visits, and the daily concern of how easy it would be for a fatal accident to occur.
There is the emotional distress of wanting your child to find joy in food and knowing that instead there may be an invisible ribbon of anxiety. There is the heart ache every time you have to deny your child something because it will simply make them sick. There’s also the challenge of trying to explain to them why the doctor’s want them to have a tiny little bit of something but only every now and then (i.e. once every four days) and why it’s not ok for them to have more or to eat it when they’re not specifically being given it by mummy or daddy (or whomever their primary carer is).
There is the extra anxiety and tears and restricted eating because someone said something thoughtless in front of them about their food and now they are scared to eat.
There is wanting to wrap them up in your arms; to have them know just how much they are loved and that you would put in these invisible hours for them a thousand times over to ease their way just a little bit.