After I mentioned my ARFID diagnosis in my Leader Dog posts, a few folks asked for more info. Here’s a piece I wrote about (all caps) MY OWN, PERSONAL, INDIVIDUAL EXPERIENCE with ARFID. Mileage may vary. I never managed to find the below “article” a home with a publisher, so I’m stashing it here. I may do a follow-up later, as this article is now a little dated and I’m learning more about myself and ARFID as I truck along. Enjoy!

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A Spoonful Of Sugar: Arguing and Arbitrating With ARFID

By Caitlin Hernandez

Misery constricted my chest as I sat, rigid with dread, the fiberglass bench gouging my legs. Sunshine pulsed enticingly against my back as the whoops and screeches of unadulterated kindergarten joy filled my ears. Our richly deserved, twenty-minute recess was dwindling down the drain. I longed to run, to play on the structure, to practice jump-roping, hula-hooping, or dribbling a ball. But here I was, cloistered in the corner. “Hurry up, Caitlin,” one of the grown-ups prompted, not unkindly. “Finish eating and then you can play.” My friend Sammy joined the conversation, her chocolate-scented breath clashing obscenely with the orange slice on the napkin in front of me. “Just eat it,” she encouraged. “It’s no big deal.” Tears threatened. My nemesis had a thick, unchewable peel, and wet, stringy flesh that would stick between my teeth. Its acidic juice would be eye-wateringly bitter. I couldn’t bear to touch it, much less put it in my mouth.

Well-intentioned admonitions like Sammy’s would plague me forever … but at five years old, I had no way of knowing that. By five years old, I’d accepted, even appropriated, the traits adults ascribed to my eating behaviors. I was “picky.” “Fussy.” “Stubborn.” At five years old, I believed I’d “grow out of this”; that, perhaps, my sensitivities to certain tastes and textures were simply related to my congenital, total blindness; that, one day, the allure of bribes and blending in might make eating an orange slice … well, a piece of cake.

Hindsight—ironically, re: my aforementioned blindness—is twenty/twenty. My trials with eating are rooted, not in blindness—at least, not in blindness alone—but in a condition called ARFID: avoidant/restrictive food intake disorder. The National Eating Disorders’ web site explains that adults and children with ARFID have difficulty meeting nutritional needs, due to sensory issues, low appetite, fears of aversive consequences during or after meals, or combinations of all three.

Unlike better-known eating disorders such as anorexia and bulimia, ARFID is rarely tied to concerns about body shape or size; however, like other eating disorders, ARFID’S manifestations (a narrow list of safe foods; omissions of certain groups, colors, or textures of food; and failure to consume balanced nutrients) yield medical consequences (GI complaints, weight loss and/or gain, fatigue, poor immunity, etc.), which, in turn, impact social functioning. The teasing and criticism of peers, haranguing from concerned loved ones, and inaccurate or nonexistent advice from medical professionals can cause or increase depression and anxiety. Self-consciousness, about both eating “differently” and people’s comments and perceptions, can make shared meals miserable at best and impossible at worst.

I’ve heard ARFID described as terror of eating unsafe foods. For me, though, ARFID’S main ingredient is disgust, combined with daily doses of trepidation, mixed well with embarrassment, topped with a generous garnish of dismay. Imagine being asked to eat a bowl of mud, or a handful of plastic, or a slab of rotten meat. You’d probably feel horrified. Scared. Unable. Those “foods” feel dangerous, inedible. They are certainly not, and never could be, anything close to appetizing.

I love tacos … hard-shelled, with beef and cheese ONLY. NOTHING ELSE. PLAIN. After years of trial and error, I’ve learned the precise language necessary to order successfully at Taco Bell: “Two crispy tacos with no lettuce.” However, with or without the magic words, ordering tacos is always a gamble. Hard shells aren’t always available, meaning that I either have to chew through a leathery soft shell or scoop taco guts with a spoon, which usually consternates me enough to deplete my appetite. Often, I’ll be revolted by the gritty scrape of unwanted lettuce against my tongue, its ominous crunch filling my ears. The mushy consistency of beans or the eerie crawl of vegetables mingling with the meat and cheese will put me off a plate entirely. Even if some kind soul removes offending items, their taint has usually sullied the dish beyond repair. And if a main course oozes into a preferred side dish, I often won’t be able to eat that, either. Sometimes I can gag down a few bites, but by then, my roiling stomach and anxiety will be competing to terminate the meal.

Taking a bite is often a leap of faith. Have these crackers gone stale and changed from pleasantly crumbly to startlingly dry and dusty? Have these noodles begun to harden because I’m eating too slowly? Is my “plain meat” truly plain? Did this restaurant change its brand of beef, type of cheese, cooking technique, or seasoning since my last visit? Even water can taste metallic, plasticky, unfiltered, or unclean. Some of a food’s qualities can be assessed by touch, certainly … but handling food is so taboo in American culture, even and especially among the blind, that I rarely rely on this. Asking sighted people for help can lead to scoffing: “Parsley doesn’t taste like anything!” “You won’t even notice a difference!” And because I present as both disabled and younger than my years, my ordering a small, simple meal off the kids’ menu often causes people to infantalize me more than they already might.

As a child, I drank copious milk and ate enough meat and carbs to maintain what the doctors deemed “age-appropriate weight.” Besides having slightly high cholesterol, which was hereditary, my lab results were acceptable. The lunches I ate at school—pepperoni pizza, hot dogs (no bun), chicken nuggets (no sauce), cheese burgers (plain), and peanut butter sandwiches (sweet French bread only, and no jelly)—were typical enough among my peers that my eating quirks slipped under the radar.

In my teens, my appetite, weight, and iron levels dropped slightly, delaying puberty and negatively affecting my sleep. I was still unable to eat any fruits or vegetables beyond potatoes, french fries (no ketchup), and Motts applesauce (plain and unsweetened only), which adults always discounted.

During college, tasked with feeding myself independently for the first time in my life, I went through terrifying periods of little to no appetite. I often had horrible stomachaches, whether or not I managed to eat. Clumps of my hair fell out on the shower floor, and my blood tests revealed anemia.

When I graduated college after a particularly difficult senior year, a disturbing, pins-and-needles sensation permanently prickled every inch of my skin. My braille display felt painfully scratchy beneath my fingertips, and the peculiar numbness caused me to fumble and drop objects. Doctors cited anxiety and advised me to “relax.” I was able to navigate these obstacles reasonably well until the COVID-19 pandemic. My decrease in physical activity led to a diminished appetite. I was always cold, even in warm weather, and felt constantly exhausted, even when I rested. My headaches multiplied in frequency and intensity. Most distressing, I would routinely dissolve into tears, devastated by my lack of enthusiasm about even my favorite foods.

My (then) doctor, concerned by my unintentional and severe weight loss, cautioned that, due to my eating habits, I was at risk for everything from heart failure to a skull fracture. Alarm and guilt over my inability to eat “well” caused my desire for food to decline still further. If not for my partner’s gentle and ever-present support, the downward spiral would surely have continued.

Even after attending partial hospitalization and intensive outpatient eating disorder programs, in which I received one-to-one therapy and psychiatric support, it has proven impossible to disentangle ARFID, blindness, and anxiety: to know where one ends and the next begins. However, my original therapist and I continue to research ARFID together, and I find immense relief in naming and unpacking my lifelong struggles with food. As I work to resolve my shame and discomfort around eating, I strive to unlearn many ingrained convictions. All food — ice cream, boxed macaroni and cheese, McDonald’s — is good food, regardless of the time of day it’s ingested. Eating whatever I can manage is preferable to eating nothing at all. Fidgets and audiobooks are helpful distractions during mealtimes. Supplements can fill in gaps when a full meal feels overwhelming.

Even if I don’t feel hungry, simply sitting in front of a plate of pleasantly-aromatic safe foods can sometimes encourage hunger. Prepping food for the week and making lists of easy-to-eat safe foods provides structure and choice, especially when my partner is out of town. I don’t have to try new foods unless or until I’m ready. On some days, no spoonful of sugar will make the proverbial medicine go down. But on other days, I only need half a spoonful of sugar. The support of those who accept my experiences with ARFID can make even a sour day seem sweet.