My ARFID Recovery Story: I Felt Alone—Until I Found Peer Mentorship

By: Kelsey Gilchriest, Equip Peer Mentor

Once when I met with a new registered dietitian for the first time, I mentioned my eating disorder. She immediately assumed it was anorexia nervosa. When I began to explain that it wasn’t, she cut me off – “is it bulimia?” Attempting to contain my frustration, I said, “no, I have ARFID.” Her response was, “what’s ARFID?”

This wasn’t the first time I’d been asked this question by a medical professional. My eating disorder is far less common than the ones most people grow up hearing about, and even rarer because I’m an adult. ARFID stands for Avoidant/Restrictive Food Intake Disorder and is characterized by a lack of interest in food, avoidance based on sensory sensitivity to certain foods, and/or a fear of eating due to a traumatic experience (like choking or vomiting).

The distinguishing factor that separates ARFID from other eating disorders, like anorexia or bulimia, is that body image issues are not a core aspect of the eating disorder — however, some folks struggling with ARFID do experience body dissatisfaction or fear of fatness.

While ARFID isn’t as widely known or common as other eating disorders, it still impacts millions of Americans. People with ARFID constitute about 14% of those seeking treatment for an eating disorder. Most of these patients with ARFID are children and adolescents – the average ARFID patient is 12 years old – but many adults also suffer from ARFID or someone can struggle with ARFID from childhood into adulthood, as was my experience.

Picky to Panic

Like many children who develop ARFID, I grew up a picky eater. I also had nightly spells of nausea from an early age, the exact cause of which is still unknown. I would fall asleep night after night on the bathroom floor, extremely anxious I was going to be sick. My brain convinced me to fear nausea. Soon I got anxious 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. Later though, the independence of adulthood became a breeding ground for anxiety. Away from the meals I trusted—the ones my mother made—I grew more and more fearful of food. Though I hadn’t experienced food poisoning since very early childhood, my anxiety was certain that if I wasn’t careful enough I would wind up sick.

A couple years after college, a coworker of mine got food poisoning in the middle of our shift. I had to step in to help cover their work, and heard agonizing details of their sickness from my peers. That night, I had my very first panic attack. It was the night I decided to stop eating entirely.

ARFID Healing

Because of my emetophobia (intense fear of vomiting), I fell under the “aversion to eating due to a traumatic experience” category of ARFID as an adult. Trauma is defined as any experience that overwhelms your ability to cope. Years of chronic nausea had made it almost impossible to cope, and the experience with my coworker traumatized me further. A few months later, I was malnourished and underweight. My therapist strongly encouraged me to seek treatment and I was admitted to the University of California San Diego’s Eating Disorder Center for Treatment and Research (UCSD).

My outpatient therapist recommended UCSD because of its rigorous program and specialized ARFID treatment. I was required to eat all meals and snacks in treatment, and refeeding after many months of restriction was incredibly tough. In group therapy, I went on and on about how I didn’t belong there and how no one understood me. ARFID can be an isolating diagnosis when it seems like no one understands your specific experiences. During my first week, my eating disorder fought hard, and begged my parents to let me switch to a less intense program.

I ultimately chose to remain at UCSD, and I’m glad I did. I soon found that the more I ate, the more I wanted to eat. I also 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 & Peer Mentorship

Over the years, once I nourished my brain and body back to health, I curated a toolbox of skills that allows me to live a life worth living. My anxiety is significantly reduced and manageable, and I’m able to approach food with joy, spontaneity, and flexibility; something I never would have thought possible. I am living proof that recovery from ARFID is possible. Now, I’m able to be in the position to help others on their recovery journeys as a Peer Mentor with Equip, an evidence-based, virtual eating disorder treatment program. 

As soon as I read about the opportunity, I felt called to offer the mentorship that I never had. When I was in treatment, my care team lacked the mentorship of someone who was personally on the other side of an eating disorder. Now, I work in collaboration with a patient’s team of providers as a key part of their treatment journey. In working with patients, I hope to help them feel less alone and gain optimism about their potential for full recovery.

While ARFID is a less common eating disorder, having a team of providers and mentors who understand it, either clinically or from lived experience, can make the recovery process less daunting. Check out this guide to learn more about ARFID and what treatment looks like.

This article was originally published on the Equip blog

Kelsey Gilchriest

Equip Peer Mentor