What It’s Like To Have It

ARFID is different from eating disorders that cause people to restrict calories due to a fear of gaining weight or because they have a distorted body image. Instead, people with the eating disorder might have sensory issues or they might have experienced a traumatic event that leads to an avoidance or restriction of food. 

“I had a gradual growth in my fears,” Diana told BuzzFeed News. “First it started out as a fear of choking on food. Once that fear did not come to fruition, it escalated to a fear of anaphylaxis [an allergic reaction]. This was particular to foods I did not enjoy or foods I had never tried before. When I did not have an allergic reaction, the fear landed at a fear of being poisoned. This started as an irrational fear that stemmed from watching a show where a person was murdered through food that I already had a fear about.” 

Children and adults with ARFID typically have lists of “safe” food they can eat. Outside of those safe foods, they may avoid eating anything with specific smells, tastes, temperatures, textures, colors, categories, or from certain brands. 

In a street-style interview with the TikTok show Please Don’t Tell Anyone, which is part of a podcast where people are asked to reveal their secret, one person named Jason shared what it’s like to have ARFID. “I have a list of maybe 20 to 25 foods that I can eat. Everything else, I get an auto-gag response. It’s been that way since I was a little kid… I carry a lot of guilt and shame about it.” 

The TikTok went viral with 3 million views and over 3,000 comments, with many people sharing their own experiences with the eating disorder. “As a fellow ARFID sufferer thank you for sharing your story and spreading awareness,” one user said. 

As more people talk about the condition and raise awareness, it can help reduce the shame that many people feel about having the disorder. As a result of their food restrictions, people with ARFID usually don’t meet their nutritional needs and may have low weight, nutritional deficiencies, and a dependence on supplemental feedings, as well as problems with mental, emotional, and cognitive function. 

It’s not clear exactly how many people total have ARFID, but in those with eating disorders, as many as 9% of adults and 22% of children may meet the criteria. About 9% of the population worldwide, including 28.8 million Americans, has an eating disorder at some point in their lifetime. 

We talked to experts about the different types of ARFID, what causes the eating disorder, symptoms, treatment options, and the psychological impact this condition can have on people who develop it. 

There are 3 different types of ARFID 

The DSM-5, the manual used by mental health professionals when diagnosing and treating conditions, splits ARFID into three categories:

• sensory sensitivity 
• lack of interest in eating
• avoidance of food due to a traumatic experience 

Sensory sensitivity 

One of the most common reasons for avoidance is a heightened sensitivity to food, including the taste, texture, appearance, smell, and more. People with ARFID might think fruits and vegetables are bitter and avoid these foods. As a result, they might rely on foods that are highly processed and dense, causing major deficiencies in vitamins and minerals. 

For most people with ARFID, food avoidance starts from early childhood — and it’s more than just picky eating, said Supatra Tovar, a clinical psychologist and registered dietitian based in Pasadena, California. 

“ARFID is an eating disorder that is characterized by a persistent anxiety about the consequences of eating, including fear of choking, vomiting, along with a significant restriction in the amount and variety of food eaten,” Tovar told BuzzFeed News. 

For some people with ARFID, like Diana, the texture and taste of food can trigger real fear. 

“If there is texture or taste I did not expect, my heart would start racing and I would do anything in my power to prevent myself from swallowing because if I swallowed, something bad would happen,” Diana said. “I would either spit it into my napkin or run to the bathroom and spit up what I had in my mouth. Once that experience has occurred, the whole food has been tainted and I either have to grab something completely new or more than likely I will no longer be eating anything else for the day.”

Traumatic experiences 

Food avoidance and restriction might be caused by a previous interaction with food. People who experience a traumatic food-related event may find that avoiding a food can momentarily ease their anxiety.

“Not all individuals with ARFID start out as selective eaters,” said Kim Anderson, the executive director at Eating Recovery Center based in Baltimore. “Sometimes, a negative experience with food such as choking, vomiting, gastrointestinal discomfort, or an allergic reaction creates fear of certain foods or even eating in general, which may lead to the development of ARFID as well.”

People with ARFID might generalize a type of food associated with the traumatic experience, avoiding entire food groups or, in severe cases, all solid foods. 

Lack of interest 

Some people with ARFID find eating a chore. Unlike people with eating disorders such as anorexia or bulimia, Tovar emphasizes that the lack of interest in people with ARFID is not based on poor body image, body dysmorphia, or a fear of gaining weight. 

“ARFID is not associated with bingeing behaviors common to bingeing eating disorder or with behaviors linked to bulimia nervosa such as vomiting, use of laxatives or diuretics, or over-exercising to compensate for binging,” Tovar said. 

People with ARFID typically don’t enjoy eating and may sometimes force themselves to eat due to concerns about malnutrition. 

“Usually there’s a general lack of interest in eating in general, not because you’re not hungry but because there’s a general fear of what the possible consequences will be from eating the food,”  Diana said. She starts by inspecting a food to make sure it’s exactly what she wanted and it looks like she expects. When trying it, she analyzes the taste and texture. 

“If the sensation does not align with the mouthfeel, panic will ensue and I would most likely spit out my food and lose my appetite,” she told BuzzFeed News. 

ARFID symptoms 

ARFID can lead to vitamin deficiencies, amenorrhea (the absence of menstrual periods), abnormal heart rhythm, and low potassium levels in the blood. Other symptoms include fatigue, dizziness, abdominal pain, constipation, cold intolerance, dry skin, and hair loss. 

ARFID symptoms can mimic other conditions, so doctors need to rule out disorders like celiac disease, irritable bowel syndrome, hyperthyroidism, or type 1 diabetes.

“Because ARFID is often mistakenly considered to be a childhood illness, many adults go undiagnosed and untreated,” Anderson said. “Although research on adults is limited, we know that their symptoms can be just as severe as younger patients and available treatments can be effective.”

Additionally, the symptoms of ARFID can look different in children and adults. 

In children, some of the common signs and symptoms of ARFID include a refusal to try new foods, a fear of choking, vomiting, or nausea, and/or a dislike of certain textures, Tovar said. In adults, signs and symptoms may include a fear of certain foods, an inability or hesitancy to eat in front of others, difficulty eating in social or unfamiliar settings, and a lack of interest in food.

Additionally, people with ADHD, autism spectrum conditions, or anxiety disorders may be more likely to develop ARFID. Children are also at higher risk of having other psychiatric disorders. 

People who avoid meat and animal products can have a deficiency of vitamin B12, which is a nutrient that keeps blood and nerve cells healthy and is only found in animal products like meat, cheese, eggs, and milk. Those who avoid fruits and vegetables can have a deficiency in vitamin C, a nutrient that helps protect the cell from damage and keeps us energized. 

ARFID treatment options 

ARFID typically needs a combination of medical, nutritional, and psychological interventions as a result of malnutrition and weight loss, Anderson told BuzzFeed News. 

“In severe cases, hospitalization or residential treatment may be warranted,” Anderson said. “Once stable, patients will engage in psychotherapy using evidence-based cognitive and behavioral strategies to increase the variety and volume of foods, gain weight as needed, and address associated anxiety or other difficulties.”

Diana managed her ARFID by seeking a professional who guided her through exposure therapy and trying fear foods. 

“I also recommend people to keep track of their progress,” Diana said. “Struggling with each new food is going to feel daunting and like no progress has been made mentally, but proving to yourself how many other foods you’ve overcome will come as a positive reminder that you can do it.”

The condition is also a good reminder to never comment about people’s bodies, even if you think it’s a compliment.

“Many patients diagnosed with ARFID are very distressed about their low weight,” Anderson told BuzzFeed News. “They often express satisfaction and pride with weight gain as they progress through treatment.”

Jason, the person featured in the TikTok video, shared more details about his experience in a podcast episode. He said it was difficult to talk about ARFID and then he felt even more stress after it went viral. However, when he finally looked at some of the comments, he realized that sharing his experience was helpful for other people.

 “I figured it would be good to talk about it. I can really relate to people who are feeling isolated, just feeling a lot of distress about it,” Jason said in the podcast. “I know that exact feeling, and I knew when I found out there was a name for it, and I found out it wasn’t just me, how big of a deal that was for me.”