What is ARFID? Symptoms, Causes, and Lived Experience
Content Warning: Discussion of eating disorders
I had an appointment with a new dietician recently, and when I mentioned my eating disorder diagnosis, she immediately assumed it was anorexia. When I began explaining that no, it wasn’t anorexia, she cut me off and asked “Bulimia?” Trying to contain my exasperation I said, “No, I have ARFID.” Her response was, “What’s ARFID?”
This isn’t the first time I’ve been asked this by a medical professional, or even a mental health professional. My eating disorder is far less common than the ones you grow up hearing about, and rarer still because I am an adult. I figured I would take this opportunity to explain what ARFID is, and how it has manifested in my own life.
“ARFID stands for Avoidant/Restrictive Food Intake Disorder.”
ARFID, previously referred to as “Selective Eating Disorder,” stands for Avoidant/Restrictive Food Intake Disorder. The first, important factor that separates ARFID from more common eating disorders, like anorexia and bulimia, is that body image issues are not the cause of the lack of eating. While I do suffer from body image distortions (I do live in western society, after all), I do not restrict food in order to reach an “ideal” body type. Instead, ARFID is associated with a lack of interest in food or a low appetite, avoidance based on sensory sensitivity to certain foods, or fear of food/eating due to a traumatic experience (like choking or vomiting).
Personally, I grew up a picky eater, like many children who develop ARFID. (In fact, the average age ARFID patients seek treatment is 12 years old, according to research done by the American Psychological Association.) In addition to the picky eating, I also began having nightly spells of nausea at an early age, which we think was caused by my chronic illness (though it could have been undiagnosed anxiety). I would fall asleep night after night on the bathroom floor, convinced I was going to be sick. I never was. But my brain convinced me that nausea was something to fear. Soon I got nervous about certain foods, sure that they would cause me to vomit, so I avoided them altogether.
This childhood avoidance of certain fear foods started small—I was still receiving appropriate nutrition—but adulthood became a breeding ground for uncertainty and anxiety. Far from the meals I trusted—the meals my mother made—I grew more and more fearful of food. Though I had not experienced food poisoning since well before the chronic nausea set in, I was certain that if I wasn’t careful enough, I would wind up sick.
During my second year living in California, I was working on a theatrical production when my boss, the Production Stage Manager (PSM), got food poisoning right before the show. As a result, I was required to step in last minute to help backstage, and also heard excruciating details of the PSM’s sickness. That night I had my very first panic attack. It was also the night that I decided to stop eating entirely.
“ARFID can be an isolating diagnosis when it seems like no one understands your specific experiences.”
As you have probably guessed by now, I fall under the “aversion to eating due to a traumatic experience” category. Trauma is defined as any experience that overwhelms your ability to cope. Years of chronic nausea had left me unable to cope, and the experience with my PSM only traumatized me further. A few months later, malnourished and underweight, I was strongly encouraged to seek treatment by my therapist and was admitted to the University of California San Diego’s Eating Disorder Center for Treatment and Research (UCSD).
ARFID can be an isolating diagnosis when it seems like no one understands your specific experiences. During my first week at UCSD I was a pretty heinous patient. In group therapy (a daily occurrence) I spouted on and on about how I didn’t belong there, and no one understood me. I quickly realized I had much more in common with my fellow patients than I first thought. I made lifelong friends, and even though most of them could never fully understand my specific disorder, they knew what it was like to be consumed by the darkness of an eating disorder. I wouldn’t have made it through treatment without them.
ARFID is less common, yes—only 14% of patients seeking treatment have ARFID—but I hope there continues to be education about this disorder. It can feel even more isolating and disorienting for someone struggling with ARFID when their own doctor or outpatient therapist isn’t familiar with the disorder.
If you have any questions that I may be capable to answer, feel free to leave a comment below! I will answer to the best of my abilities or refer you to someone who can.
For any of our readers who are struggling with ARFID: you are not alone. I know how scary food can feel. Your experiences and your feelings are valid. If you have been diagnosed (or even if you think you may have ARFID), feel free to drop a comment down below, and please explore the course offerings within Eat Breathe Thrive designed to help you through your recovery! Your disorder does not define you. You are also stronger and more capable than you may ever believe.
About The Author
Kelsey Gilchriest is a mental health advocate passionate about breaking down the stigmas that surround mental illness. While in treatment for an eating disorder, her therapist challenged her to use creativity to defy her perfectionism, and her own personal blog was born. The more she wrote and expressed her fears, hopes, and struggles openly and honestly, the more comments and messages she received from readers who saw themselves in her stories. Years later, Kelsey’s blog is still going strong as she continues advocating for those who feel voiceless and dismantling the idea that those with mental health struggles should stay silent.
Kelsey resides in Nashville, Tennessee, and works as a Peer Mentor at Equip. She enjoys yoga and photography in her spare time. Kelsey is thrilled to be writing for Eat Breathe Thrive, and thanks you for reading!