For some backstory, I wrote this piece when I was starting my Freshman Year of college at Saint Anselm. It is a personal reflection of my time living with ARFID.
I want people to understand ARFID. I want people to understand that I did not choose this and that I am trying to fix it. I want to eat like normal people. I want to stop skipping meals and events out of fear that there won’t be food for me. I wish I could tell if ARFID causes anxiety or if it’s the other way around. Or if neither causes the other. Why do I have this disorder? What could I have done to prevent this. Not much; it started when I was 2. I have constantly felt bad that I can’t eat normally. I am often met with the choice between sitting out a social gathering and going, but being incredibly anxious the whole time/starving/faking a stomachache/hiding in the bathroom. The list goes on and on.
The last time my eating could be described as “normal” was when I was 2 years old, or so I’ve been told. I had no problem eating anything and everything. Then, it just changed. I went weeks where all I would eat was a fingerful of butter and a few baby M&Ms. I stressed my mother out to no end and she took me to the doctor, who told her not to force me to eat and that I would grow out of it and eat when I was hungry. That experience as a toddler began my less-than-friendly relationship with food.
Through my early childhood, I remember eating a very limited selection of foods. Most of these foods were bread/carb based with a crunchy texture. No one could convince me to eat a vegetable. Despite these limitations, I seemed to be growing like any other normal, healthy child. Family meals were embarrassing, when we did eat together, because my mom would have to make me a separate dinner almost every night. My sisters made fun of me, made me feel like a freak. I don’t blame them for that; they didn’t understand. Hell, I didn’t even understand yet. “She’s a picky eater.” Is a sentence I must’ve heard a million times. My parents tried every picky eating solution in the book.
“No leaving the table until you eat your vegetables”
“Try this one bite, it’s not going to kill you”
“Gabby is eating it, why can’t you?”
And on and on and on and on.
I distinctly remember being taken to the doctor once when my parents felt my eating habits were out of control. The doctor gave some tips to combat my “picky eating”.
“Try one new food every day/week”
“Prepare a familiar food a new way”
“Write down the food you eat every day and think of some foods you’d like to try”
When nothing worked, the doctors decided that since I was healthy, there wasn’t much else for them to do. This was long before the DSM-5.
Not too long after this fruitless attempt, I had my first allergic reaction. After blood testing, I was discovered to be allergic to nearly all the “big 8” major allergens, to varying degrees. As if my relationship with food wasn’t bad enough, this created major food anxiety for me. I was terrified that everything I ate contained an allergen. I only ate meals that my mother cooked, after asking her to wash her hands multiple times and after multiple reassurances that it was safe. I started washing my hands a ridiculous amount, looking for allergens in every item I encountered. The anxiety triggered fake instances of anaphylactic shock where I convinced myself that I couldn’t breathe and that I was having a reaction, even when I hadn’t eaten anything. I still have this problem now to7 a much lesser extent. At one point, this food phobia got so out of hand that I reserved my right hand for eating, and did everything else with my left hand, to avoid contamination. I am right-handed, so it was difficult to hide this habit and I was often questioned by teachers and family, to which I replied that I was “trying to make myself ambidextrous.” No one bought it.
The lowest point of my food anxiety was the week of my sister’s wedding. The wedding was in North Carolina and we packed up the rental van and took off for the 13-hour drive; my parents, 2 sisters, and me. I complained of a stomach ache on the way there, so I nibbled on rice cakes and didn’t eat anything else. No one thought much of it; they just assumed I was carsick. That changed when over the next days, I starved myself out of fear of a reaction. In our hotel room, my mom cried and begged me to eat goldfish crackers. She tried to bribe me at first, saying I couldn’t go to the wedding if I didn’t eat. When that didn’t work, she pointed at the hospital across the street and told me if I didn’t eat they would have to take me there to get food pumped into my stomach through a tube. She had my sister, a registered nurse, confirm this to me. I don’t remember when I finally gave in to eating a meal, but I’m sure it came shortly after nearly fainting at the hotel pool with my sister and brother-in-law. It must’ve been 2 or 3 days of eating almost nothing.
BIG DEVELOPMENT: I found one vegetable: cucumbers!! Mom and dad must’ve been thrilled. I was forced to try a piece of cucumber with some salt on it. I didn’t gag, and I got it all down. There were a lot more cucumbers in our house after that day. That’s still more or less the only vegetable I will eat, other than peppers. I don’t enjoy either, but I don’t choke when I try to eat them.
School lunch was always a challenge. Kids are brutal to each other, sometimes well-meaning, but often not. I would get harassed, even by my friends, for not eating normal food. I was constantly bombarded with questions from everyone around me about my eating habits. It made me incredibly embarrassed and I felt like it was my fault that I was such a freak. While everyone else would cheer about a pizza party, I would sit silent, already coming up with excuses to get out of it. In 6th grade, I stopped eating lunch. My friends knew I had a “weird thing” about people touching my food (fear of contamination), so they thought it was funny to mess with me and touch my food before I ate it. In another situation, this would be harmless, but it nearly always ended in me not eating anything. I didn’t want to seem dramatic, so I silently went hungry and tried to laugh along with them. Even when they got tired of the bit and stopped, I was still often too paranoid to eat my lunch.
The best thing to happen to my diet: hot sauce. Frank’s Red Hot drastically changed the way I eat. The strong flavor of hot sauce, which I love, helps to mask other flavors that I previously found hard to stomach. It can’t fix everything, but it definitely broadened my food horizons.
Because of the new discoveries about hot sauce, I decided to add a new, normal lunch food to my list of safe foods. Buffalo chicken cold-cuts and cheese on a roll, with extra hot sauce. I was happy and proud of myself for this step, until people started making a big deal about it. “Oh my goodness, is Julia eating a sandwich?!” bellowed Mrs. Glynn, causing everyone to look over at me. My face turned red and I faked a smile, but couldn’t eat with this much attention on me. There goes that attempt.
Things continued on more or less the same from that point. I had pretty much given up on new foods and stuck with what I had. I was at a standstill. Nothing was getting worse, but nothing was getting better either.
Then came middle school. I looked around and saw my friends and the other girls at school. All tiny, skinny, small, and pretty. I looked in the mirror. I was pudgy, chubby, and ugly. These thoughts about myself festered for most of middle school. It didn’t really change my eating habits. This was the time of “eating disorder culture” on sites like Instagram. Girls would create secret accounts where they posted black and white photos of girls with thigh gaps, with captions outlining the ways they planned to starve themselves to achieve these “body goals”. They posted pictures with captions like “for every like I will fast for one hour”. Some people I knew even had accounts like these for anorexia or self-harm. I spent a lot of my nights scrolling through these pro-ana pages, feeling guilty for envying the bodies and lifestyles of the sick girls I saw. I probably tried one or two times to starve myself, but thankfully, I didn’t have the will power. The self-esteem issues were pretty serious, and I have definitely suffered mentally as a result, but I never developed anorexia (even though a cruel part of me wanted to). That could’ve gone a lot worse, but I narrowly escaped the grasp of a negative body image induced eating disorder.
Entering high school, I was coming to terms with the clear signs of mental illness I displayed. I didn’t do anything about this, but I acknowledged it was there. I was depressed and anxious. I tried to cut myself once in 9th grade, but it was an almost pathetic attempt. I knew in my heart I didn’t want to do that, so I couldn’t bring myself to make anything more than an indent in my thigh. That’s another example of a situation that could’ve turned out much worse than it did. It’s another reason I’m grateful. I had friends who self-harmed and I knew I couldn’t help them if I fell into the same hole. So, I stopped trying.
One of the most refreshing and liberating moments I can remember was the day I came to a self-diagnosis. I was deep in a “What’s wrong with me?!” Google search, like so many times before. Unlike the other times, however, this time I found something. I came across an article about Selective Eating Disorder (SED), also known as Avoidant/Restrictive Food Intake Disorder (ARFID). The more, I read this article, the more I realized that every single sentence described exactly the nameless food problems I have been dealing with my entire life. This was no cure, not even a solution, but it was a name. It was the first time I realized I am not alone. I had never met another person with the problem I had, but now my computer screen opened wide a door leading to the stories of dozens of people who had the same experience as me. I immediately sent this link to my mom, who was just as excited as I was.
I never got a formal diagnosis. I’ve never said the word ARFID to a doctor. I’ve never seen a specialist or a therapist or talked to anyone professionally about this. I’m not sure why. I guess I just have been living with it for so long, that it didn’t feel necessary. Just like the doctors said when I was a kid: I’m healthy, it’s under control. I’d like to get help eventually though. Until then, I’m living and I’m doing okay.
As I got older, my intense food anxiety reduced, but I still ate a very limited selection of foods. I still avoided going to friends’ houses for dinner. I still faked illness and made excuses at every opportunity. I explained it to some of my close friends in high school, but it isn’t an easy topic to bring up. Now I’m in college and no one here knows. No one has made the connection yet that almost every night for dinner I get a piece of grilled chicken and a side of fries. Or maybe they have, and they don’t want to be rude and bring it up, which I appreciate. It’s not a conversation I’m willing to have right now. I know I shouldn’t feel embarrassed or ashamed of it; but I do, and I don’t want to deal with the awkwardness of telling people.
I’m getting better. My boyfriend is supportive and wants to help me. My parents continue to be very understanding. I have tried a few new foods since college started. I ate a hot dog last month. If you know me, you know that’s a huge step. I’m taking steps and that’s what matters.