disability, neurodivergence, and food
fair warning: this post discusses dysfunctional eating and complex relationships with food. if you're not up for reading about that, now is a good opportunity to click away.
still here? ok.
i've been meaning to write about my messy relationship with food for a very long time. it's something that haunts me every day of my life - eating and food is necessary for survival, and it's impossible to ignore - but despite the fact that i've been working at this for a very long time, it has not gotten easier. if anything... it's actually gotten harder!
but i should probably explain why.
so, i'm neurodivergent. one of my unavoidable quirks is that i am ultra sensitive to every kind of sensory input: taste, smell, touch, sight, and sound. if it was just one or two senses that were over-tuned, it might be easier for me to manage... but unfortunately, i am cursed with all of them. for example, i can't stand loud sounds or bright lights. and... food has always been a huge problem for me.
i can't eat very many things. the texture, taste, smell, even temperature; if any of that is slightly off, i cannot eat it. i get deathly nauseous, my stomach will turn, i will gag, my body will uncontrollably rebel in every way it can think of. when i was younger, this was particularly frustrating to me, because i didn't fully understand why this happened. only that i had been branded with the shameful label of "Picky Eater", and that eating was something i dreaded.
but, i wanted to understand. why were some foods tolerable or enjoyable for me, and why did i hate others? my frustration turned into curiosity. i started to research how cooking actually worked, why ingredients taste the way they do, how ingredients and cooking processes change the texture and scent and taste of dishes, etc. TV shows like Alton Brown's Good Eats, and J. Kenji Lopez-Alt's Food Lab column on Serious Eats were incredibly enlightening to me.
i learned to like more foods, because i could study them before trying them for myself. i could understand how it's made, what ingredients go into it, read descriptions of how it tastes and smells... it was a huge milestone for me! now i know that i can't stand the taste of vinegar, or that the texture of cold, fresh produce makes me deeply ill. but i do like my veggies roasted, especially if they've been cooked to a golden brown crisp. raw onion and garlic are a no-go - i can't even be in adjacent rooms if they're present, let alone prepping or eating it myself - but i like the way they sweeten and mellow out when caramelized or roasted. finally, cooking was fun.
and then... my physical health got worse.
my stamina has only gotten weaker over the years. it's always been pretty bad - at the absolute peak of my health, i was only able to walk for 20 minutes or so before getting exhausted - and it has only gotten worse. for years, doctors told me to "simply walk more, and your stamina will get better over time". i walked every day for 5 years, because i did not have access to a car, and i had no other option available to me. over that entire stretch of time, i saw little-to-no progress. just pain.
i have to be conscious of every single action i take. especially in the kitchen. if a meal takes "only" 30 minutes to cook, but every minute requires continuous standing time, i can't do it. i can't chop too much, because it'll wear out my wrists and hands. the "meal prep" method doesn't really work for me, because i'll wear myself completely out on all the advance prep work, and eating the same thing repeatedly through the week makes me sick.
every single day is a nightmare. i can't remember the last time i didn't dread my spouse asking me "what do you want for dinner tonight?", to the point where she always warns me in advance when she's about to ask me my "least favorite question in the world". i've been undereating for months. i rely too much on takeout because whoops, i spent all of my physical strength on other chores and now i'm too exhausted to cook.
over time, i've been trying to sort through my saved recipes, so i can easily find recipes that are kinder to my chronic pain. not to mention, compatible with both me and my spouse's severe and often conflicting eating needs. but i quickly get sick of it. i hate having to confront it. it is deeply miserable. so i chip away at it, a bit at a time, and stop when i start to spiral. i'm probably... 60% of the way through my recipe collection at this point? i think?
and, i have found some resources for cooking with chronic pain. King Arthur Flour's blog published Baking with Chronic Pain, a long post with helpful tips that apply beyond just baking. several months ago, Julia Turshen rounded up Thoughts On Making Cooking More Physically Accessible, with tons of crowdsourced input from her readers. and i saved this blog post, Energy Saving Cooking Tips When You Are Chronically Ill some years back, when i realized that i couldn't keep ignoring my disability.
despite all of that... it's still exhausting. as i'm writing this post, it's almost 6 PM, and i should probably figure out what we're eating for dinner tonight. but of course, i don't know, and i'm quite stressed about it. i want to get to a point where i don't completely dread cooking and eating. there was a brief moment in time where i actually enjoyed it, and i miss those days. i've been trying everything i can think of to conquer my dysfunctional relationship with food, and it's still not enough. i'm just so tired.
it's hard to avoid feeling deeply resentful of my neurodivergence and my disability. it feels like everyone else is able to put just about anything in their mouth, and not instantly throw up. i've starved at just about every food-centric gathering i've been to, unless i had some say over the menu. and ever since my disability got worse, i started to lose the one bit of agency i had over food. but no matter how hard i wish, i'm not going to wake up one day and magically be neurotypical and able-bodied. i'm stuck with the body i have, whether or not i like it. it's all up to me to figure out a way to work with it.