Of the list of eating disorders, ARFID might not be one that you recognize – but it can be just as dangerous as the better-known conditions.
ARFID, or Avoidant Restrictive Food Intake Disorder, is defined by the Cleveland Clinic as a condition that limits a person’s food intake. It is recognized in the DSM-5 (the Diagnostic and Statistical Manual of Mental Illnesses by the American Psychiatric Association).
The disorder is marked by intense fear and anxiety about food and its specific qualities – like smell, taste and texture – or the consequences of eating, such as choking.
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Limiting food intake at an extreme level can lead to malnutrition and nutrient deficiencies, which 9-year-old Hannah of Los Angeles has experienced.
Hannah and her mom, Michelle, (who chose not to disclose their last name) sat down for an interview with Fox News Digital to discuss their journey with ARFID, which has included a prominent social media presence.
On Instagram, the duo has 1.5 million followers. Their TikTok account (@myarfidlife), features videos of Hannah bravely trying new foods, which have reached millions of views among nearly 460,000 followers.
Long before Hannah began sharing her journey on camera, Michelle struggled with what she thought was just a “picky eater.”
“I realized this was way more than just picky eating. This was obviously tormenting her.”
Michelle explained that Hannah, who is the youngest of three, was a “great eater” as a baby — until she was introduced to solid foods.
“She would protest, and she would spit the food out, or she would swat it out of my hand, or she would turn her head in the other direction,” she said — all “pretty common” behaviors among kids.
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But by the time Hannah turned 3, Michelle said she had started refusing even the select foods she once ate.
“It was very frustrating for us because she was already so limited as to what she was willing to eat,” she said.
Michelle, pictured here with her husband and three children, noted that Hannah’s case looked “very different” from her oldest son, who is autistic and had a hard time eating as a newborn. (@myarfidlife)
Since Hannah was still growing normally, her doctors “weren’t too concerned,” and assumed she’d grow out of the picky eating.
After COVID-19 hit, Michelle said Hannah’s eating took a turn for the worse, and she eliminated even more food.
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“It was a big struggle to get her to eat anything at all,” she said. “She had no interest in food whatsoever, and her growth started to slow down.”
Hannah’s doctors ran tests to see if there was another health condition, such as IBS or celiac disease. She was referred to other specialists, from endocrinologists to nutritionists.
Hannah was also seeing a feeding therapist, which caused “a lot of stress and anxiety,” her mother noted.
Hannah, pictured with her mom Michelle, shared that she likes to draw, read and write, and play with slime. (@myarfidlife)
The doctors instructed Michelle to continue offering Hannah food when she was hungry, but her daughter’s condition only worsened.
“She couldn’t handle being around food,” she said. “She couldn’t handle sitting at the dinner table with us. She couldn’t handle the smell when I was cooking something in the kitchen.”
As Hannah got older, she didn’t grow out of the condition, but was able to verbalize her internal struggle.
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“We were in a drive-thru and I asked [Hannah], ‘What would you like me to order?’ And she broke down at that moment and asked me, ‘Why is it that every time you talk about food, it makes me really anxious?’” Michelle recalled.
“Hearing those words … I realized that this was way more than just picky eating. This was obviously tormenting her.”
Seeking help and ‘validation’
Michelle decided to seek help from a mental health care professional and found a therapist who specialized in ARFID. She said their first conversation was “so validating.”
“I remember saying to her, ‘She has very few foods that she’s willing to eat. And one of the foods is sour cream and onion Pringles, but they have to be in a special packaging. She refuses to eat the Pringles that come in the large container. They have to come in the individual small containers.’”
“And hearing the words from her — ‘This is so classic of ARFID’ — was so validating.”
The “psycho-social interference” of ARFID can be difficult in social settings, like at school and parties, according to an eating disorder expert. Hannah, pictured with her brothers, is living with the condition. (@myarfidlife)
The therapist first recommended nutritional protein shakes, which were difficult for Hannah to stomach.
But Hannah, who was dangerously underweight, told her mother, “I don’t want to live like this anymore.”
“She was at risk of needing a feeding tube,” Michelle told Fox News Digital. “She fell off the growth chart and wasn’t gaining weight. She wasn’t growing in height.”
“I don’t want to live like this anymore.”