putting down the rope

CW: discussion of eating disorders

I had an appointment with a new dietician recently, and when I mentioned my eating disorder, 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. The first, important factor that separates ARFID from more common eating disorders, like anorexia and bulimia, is that it does not show evidence of body image issues as 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 in California, I was working on a show when my 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.

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 highly sought after Eating Disorder Center for Treatment and Research.

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 occurence) 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 UCSD without them.

I got incredibly lucky that this international leader in in eating disorder treatment and research was a seven minute drive from my house, and that I had the financial support to afford a partial hospitalization program. (I still firmly believe that the universe brought me to San Diego so that I could have access to such an incredible treatment program.) I spent five months in treatment, learning skills and tools to help me increase my exposure to fear foods, while my treatment team helped me get my weight back up. Before this year’s hospitalization, it was the most difficult experience of my life.

UCSD’s program saved my life. More specifically, it handed me my life back. I started this blog, I learned how to talk back to my fear, and I was given the freedom to work, play, or travel without being limited by accessible food or absence of energy due to weight loss and malnutrition. At UCSD I learned the importance of community, and felt the first real call to become a therapist myself.

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 my 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 send me a message on the contact page or drop a comment down below. Your disorder does not define you. You are also stronger and more capable than you may ever believe.