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Equip Peer Mentor Kelsey Gilchriest began having issues with food at an early age. But at the timeâand even to this dayâmany of the people in her life downplayed the severity of her problems. âWhat I often experience is people believing I'm âjust a picky eater,ââ she says. âMy father was also labeled a picky eater, so my avoidance of certain foods was more normalized in my household.â
Gilchriest didnât 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 didnât know all those years she was labeled a âpicky eaterâ was that her symptoms were actually characteristic of an eating disorder known as ARFID (avoidant restrictive food intake disorder).
What is ARFIDâand is it an eating disorder?
âARFID is an eating disorder that is not defined by a fear of gaining weight or dissatisfaction with how one looks,â says Equip VP of Program Development, Jessie Menzel, PhD. âRather, 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.â
While ARFID can result in serious physical and psychological consequences, itâs often misunderstoodâor missed completelyâbecause 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.
âI'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,â Gilchriest says. âThis 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.â (Itâs important to call out that many people with ARFID do have body image distressâwe all exist within diet culture, after allâbut ARFID behaviors donât stem from a desire to lose weight or change oneâs 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 disorderâand how to advocate for proper treatment.
Why doesnât ARFID âfeelâ like an eating disorder to some?
âThere are so many reasons why I think some people do not see ARFID as a ârealâ ED,â Menzel says. âFirst, we as a society still associate âeating disorderâ with âbody dissatisfaction,â even though some eating disordersâlike binge eating disorderâdonât even require body dissatisfaction as part of the diagnostic criteria.â
Another common reason many peopleâeven those experiencing itâtend to disregard ARFID as ânot that serious,â is the same reason Gilchriestâs restrictive habits were often ignored. âARFID is commonly confused with picky eating and I think people often dismiss picky eating as ânormalâ or âjust a phase,ââ Menzel says. âWhile 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.â
Finally, ARFID is also often dismissed as a less-than-serious issue because many consider the symptoms to be characteristics of developmental growing pains. âPeople incorrectly assume that ARFID is a childhood problem and many donât think that children get eating disorders,â Menzel says. When people view ARFID in children as developmentally normal behavior, and ARFID in adults as mere picky eating, itâs easy to understand why theyâd fail to associate it with other eating disorders. â
Some people with ARFID actually prefer to acknowledge the difference between ARFID and other diagnoses by referring to ARFID as a âfeeding disorderâ rather than an âeating disorder.â 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 far too long, leading to worsening symptoms that impact a personâs health and quality of life. âI work with adult patients who have struggled their entire lives with debilitating anxiety around food and eating without receiving any support professionally or interpersonally,â Gilchriest says. âAs with any eating disorder, there can also be medical consequences if it goes untreated.â
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
âARFID needs the same multidisciplinary treatment approach that we know works well for other eating disorders: a therapist, a dietitian, and a medical provider,â Menzel explains.
But many people with ARFID arenât directed toward such treatment, largely because awareness and understanding of ARFID still isnât 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) within the last eleven years, while anorexia and bulimia have been in it for many decades.
âIt's important to look for providers that have training and experience specifically in treating ARFID,â Menzel says. âJust because a provider treats eating disorders doesnât mean that theyâre 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).â
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. âIn my three years of working with ARFID patients, I have not met two people whose presentation of ARFID is exactly alike,â she says. âEffective 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.â
Given how different ARFID can look from person to person, itâs natural to question whether your or your loved oneâs symptoms are âbadâ enough to merit treatment. But according to Menzel, if you have any suspicion that thereâs a problem, itâs time to seek support. âI always tell anyone with ARFID to trust their gutâno pun intended!â she says. âIf youâre unhappy with the way youâre eating, if food is getting in the way of you finding joy in life, if food is causing you pain, distress, or anxietyâtalk 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.â
If youâre concerned that you or a loved one may be struggling with ARFID, donât ignore it. Speak to your doctor or schedule a consultation with someone on our team to get a professional assessment.
- âWhat Is ARFID (Avoidant/Restrictive Food Intake Disorder)?â n.d. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/24869-arfid-avoidant-restrictive-food-intake-disorder.
- Downey, Amanda E et al. âLinear growth in young people with restrictive eating disorders: "Inching" toward consensus.â Frontiers in psychiatry vol. 14 1094222. 3 Mar. 2023, doi:10.3389/fpsyt.2023.1094222
- Seetharaman, Sujatha, and Errol L Fields. âAvoidant/Restrictive Food Intake Disorder.â Pediatrics in review vol. 41,12 (2020): 613-622. doi:10.1542/pir.2019-0133
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