ARFID: The Eating Disorder You Haven’t Heard Of
All my life, I have been told I was just a picky eater. Even as a toddler, I struggled to eat and drink without gagging. Doctors told my family that this was something I would eventually grow out of.
My “picky eating” was framed as a conscious choice instead of something out of my control. It’s often assumed that so-called picky eaters are stubborn, childish, or closed-minded, but this isn’t always the case. One day, I came across an article about a condition called avoidant-restrictive food intake disorder, or ARFID. Suddenly, everything clicked. I wasn’t picky, I had an eating disorder.
ARFID is an eating disorder involving the avoidance of certain foods (or food in general) due to a lack of interest or extreme discomfort when eating. It can cause nutritional deficiency, weight changes, and anxiety regarding food. Unlike other eating disorders, ARFID has nothing to do with body image or wanting to lose weight. As I worked through my undergraduate degree in neuroscience, I was disappointed that I never came across this disorder in my studies. ARFID is often left out of conversations about eating disorders, and as a result, many people are unaware of it.
ARFID expresses itself in many ways. My experience is that certain tastes, smells, and textures make me feel physically sick, causing me to gag. A common symptom of ARFID is the fear of vomiting or choking which furthers the cycle of avoidance.
Some people suffered from an illness or medication, such as chemotherapy, that made eating difficult and still struggle with food after recovering. Others are diagnosed with ARFID as a comorbidity (or co-occurring condition) of autism spectrum disorder, obsessive-compulsive disorder, or a number of anxiety disorders.
Many people find the sensory experience of eating to be overwhelming. Lots of people with ARFID have a lack of interest in food because the act of eating can be anxiety-inducing. People can have one of these reasons, a combination, or none of them. It’s different for everyone.
Many people with ARFID have diets limited to “safe foods” that they’ve tried and know that they can eat. Some people have specific “fear foods” that they can’t eat while others struggle with “foreign foods” that they haven’t tried before. Others have wide diets but can’t stand a certain food group like meat or vegetables.
Lots of people with ARFID struggle with the inconsistency of non-processed foods like fruit because the taste and texture tend to vary, making it difficult to predict how the food will feel. Heavily processed foods, like chicken nuggets and fries, are generally popular among people with ARFID because the taste and texture are consistent.
One misconception about people with ARFID is that we refuse food because we don’t like it. For me, this is not the case. I regularly eat foods that I don’t like, but there is a big difference between a food I don’t like and a food I can’t eat. For me, eating can feel like the chills you get when you’re sick. It’s a very visceral feeling that goes beyond annoyance or dislike. Sometimes, I can’t even keep chewing, even with food I like. I personally don’t feel anxious when trying new foods, but many people with ARFID fear eating things they haven’t had before.
ARFID can be a very vicious cycle. Not eating makes me nauseous, which makes me not want to eat, which makes me more nauseous. Sometimes I start to get hungry around dinner time, but hunger during the day isn’t something I usually experience.
Reaching 2,000 calories per day is a lot of work. I have to consciously remind myself to eat because I usually don’t have an appetite. It can be nauseating to keep eating when you already feel full or never felt hungry in the first place, which can make it difficult to even begin.
ARFID can sometimes cause or exacerbate weight gain. Anyone can suffer from an eating disorder, regardless of size. Overweight people can have a harder time getting treatment because they don’t fit the typical image of disordered eating. Many treatment programs require a person to be clinically underweight to be eligible. As a result, many people are excluded from treatment because of their size. Furthermore, most eating disorder treatments focus on body image, which isn’t a factor for people with ARFID.
Living with ARFID can feel very isolating. Many social events revolve around food, so it’s nearly impossible to avoid questions about eating. As a result, social anxiety often co-occurs with ARFID because people become increasingly self-conscious about their eating. This isn’t helped by the fact that our choices are frequently scrutinized by those around us. People often comment on my portion size, the fact that I ordered just a side, or the lack of condiments on my food. While I’m usually open to answering questions and helping people understand, I don’t always want to discuss the details of my disorder with strangers. Sometimes I just want to enjoy a meal out with my friends, without someone making a comment about my food. Eating privately is often easier than answering questions or hearing others comment on your order. I often eat before I hang out with my friends because I feel bad about making them accommodate my food choices. The process of ordering food and eating it publicly can be incredibly stressful, which makes doing so an act of courage for many of us. One of the most frequent and frustrating questions that I’ve been met with is “how do you know you don’t like it if you don’t try it?”. I find this question condescending because it implies that I don’t know myself well enough to know what I can and can’t handle. It also ignores the fact that you can draw a lot of conclusions about a food without tasting it. Texture and smell can be triggers for people with ARFID, so we can usually figure out if these things will cause a reaction simply by looking at and smelling the food. We can also mentally compare it to similar foods we’ve tried before and consider each ingredient individually. We’re not being close-minded when we say we don’t want to try something, we’re trying our best to manage our eating disorder while remaining polite, which can be quite the high wire act at times. I don’t think most people are being malicious by asking these questions, but it gets tiring when you’ve been asked them so many times. I hope that if more people are educated about ARFID, they will be more respectful of others. Not every so-called “picky eater” has ARFID, but if this article feels true to your experiences, it’s worth discussing with a doctor and/or a psychiatrist. Help can be hard to access because of the general lack of awareness regarding ARFID, but progress is being made. I wrote this article because I spent most of my life thinking I was the only person in the world with this problem. Once I realized that my experience had a name, I could identify it as something real and quantifiable. Sometimes just having an explanation and knowing that you aren’t alone is life-changing. Resources ARFID Awareness UK BEAT Eating Disorders
Header image source: A painting by @brainless_drawings, an artist with ARFID