ARFID Might Not "Feel" Like an Eating Disorder. It Absolutely Is.
Kelsey Gilchriest, a peer mentor at the eating disorder treatment provider Equip, began having issues with food at an early age. But at the time—and even to this day—many of the people in her life downplayed the severity of her problems. “What I often experience is peoplbelieving I'm ‘just a picky eater,’” she says. “My father was also labeled a picky eater, so my avoidance of certain foods was more normalized in my household.”
Gilchriest didn’t develop an aversion to specific foods due to body image issues, a fear of weight gain, or emotional distress, all of which might have signaled that she was dealing with an eating disorder. Rather, her main motivation to limit her intake came from a fear of vomiting, otherwise known as emetophobia. Reflecting on her experience now, Gilchriest knows that a history of chronic nausea and gastrointestinal issues, compounded by significant anxiety, contributed to her food habits. But what she didn’t know all those years she was labeled a “picky eater” was that her symptoms were actually characteristic of an eating disorder known as ARFID (avoidant restrictive food intake disorder).
What is ARFID—and is it an eating disorder?
“ARFID is an eating disorder that is not defined by a fear of gaining weight or dissatisfaction with how one looks,” says Equip VP of Program Development, Jessie Menzel, PhD. “Rather, ARFID is driven by one or more things: extreme sensitivity to the sensory properties of food, a fear of a bad outcome after eating, like vomiting or choking, or a lack of interest in food.”
While ARFID can result in serious physical and psychological consequences, it’s often misunderstood—or missed completely—because of how different it looks from other eating disorders. This can be true for the people who are struggling, their loved ones, and even experts in the field.
“I've had medical professionals tell me that I don't have an eating disorder simply because I don't struggle with body image or have a desire to change my body,” Gilchriest says. “This was damaging for many years, as I only had a handful of foods that I would eat and yet my therapist and doctors didn't think I had a problem.” (It’s important to call out that many people with ARFID do have body image distress—we all exist within diet culture, after all—but ARFID behaviors don’t stem from a desire to lose weight or change one’s body.)
Pervasive confusion and lack of information about ARFID may lead many people, like Gilchriest, to doubt if they really have an illness at all. But the truth is, ARFID is a very serious eating disorder, even though it can differ significantly from more well-known eating disorders, like anorexia and bulimia. Read on to learn why ARFID is absolutely an eating disorder—and how to advocate for proper treatment.
Why doesn’t ARFID “feel” like an eating disorder to some?
“There are so many reasons why I think some people do not see ARFID as a ‘real’ ED,” Menzel says. “First, we as a society still associate ‘eating disorder’ with ‘body dissatisfaction,’ even though some eating disorders—like binge eating disorder—don’t even require body dissatisfaction as part of the diagnostic criteria.”
Another common reason many people—even those experiencing it—tend to disregard ARFID as “not that serious,” is the same reason Gilchriest’s restrictive habits were often ignored. “ARFID is commonly confused with picky eating and I think people often dismiss picky eating as ‘normal’ or ‘just a phase,’” Menzel says. “While a degree of pickiness certainly is normal, ARFID is not run-of-the-mill pickiness. It is restricted eating that has gone so far that it negatively impacts health, growth, and social and emotional well-being.”
ARFID can also be dismissed as a less-than-serious issue because many consider the symptoms to be characteristics of developmental growing pains. “People incorrectly assume that ARFID is a childhood problem and many don’t think that children get eating disorders,” Menzel says. When people view ARFID in children as developmentally normal behavior, and ARFID in adults as mere picky eating, it’s easy to understand why they’d fail to associate it with other eating disorders. ”
Some people with ARFID actually prefer to acknowledge the difference between ARFID and other diagnoses by referring to ARFID as a “feeding disorder” rather than an “eating disorder.” This categorization feels better to some people, while others prefer to call it an eating disorder. Regardless of the categorization, ARFID is a very real condition that should be taken seriously.
The dangers of not recognizing ARFID as an eating disorder
One real risk of not recognizing ARFID as an eating (or feeding) disorder is the possibility that the illness goes unchecked for too long, leading to worsening symptoms that impact a person’s health and quality of life. “I work with adult patients who have struggled their entire lives with debilitating anxiety around food and eating without receiving any support professionally or interpersonally,” Gilchriest says. “As with any eating disorder, there can also be medical consequences if it goes untreated.”
For growing children, letting ARFID go undiagnosed or untreated can have particularly dire physical consequences. Children and teens need proper nutrition in order for their bodies to develop in a healthy and normal way, and the nutrient deficiencies and malnourishment that comes with ARFID can lead to stunted growth and delayed puberty, among other issues.
Why ARFID requires the same comprehensive treatment as other eating disorders
“ARFID needs the same multidisciplinary treatment approach that we know works well for other eating disorders: a therapist, a dietitian, and a medical provider,” Menzel explains.
But many people with ARFID aren’t directed toward such treatment, largely because awareness and understanding of ARFID still isn’t widespread in the medical community. This makes sense, given that the illness was only added to the The Diagnostic and Statistical Manual of Mental Disorders (DSM) in 2013, while anorexia and bulimia have been in it for many decades.
“It's important to look for providers that have training and experience specifically in treating ARFID,” Menzel says. “Just because a provider treats eating disorders doesn’t mean that they’re able to treat ARFID. Look for treatment modalities, too, that have been specifically developed and tested with ARFID, like family-based treatment for ARFID (FBT-ARFID) and cognitive behavioral therapy for ARFID (CBT-AR).”
Gilchriest points out that there is significant variability among those living with ARFID, and the way the illness presents itself can be very specific to the individual. “In my three years of working with ARFID patients, I have not met two people whose presentation of ARFID is exactly alike,” she says. “Effective treatment for ARFID uplifts the lived experience of the patient, as they are the experts in their experience and can collaborate on and define what recovery looks like for them.”
Given how different ARFID can look from person to person, it’s natural to question whether your or your loved one’s symptoms are "bad" enough to merit treatment. But according to Menzel, if you have any suspicion that there’s a problem, it’s time to seek support. “I always tell anyone with ARFID to trust their gut,” she says. “If you’re unhappy with the way you’re eating, if food is getting in the way of you finding joy in life, if food is causing you pain, distress, or anxiety—talk to someone about it. Eating disorders are not just about wanting to lose weight or change the way you look. You may be struggling with ARFID.”
This article originally appeared on equip.health.