JACKSONVILLE, Fla. — Imagine if someone handed you a coiled up rattlesnake and told you to eat it. That's how one therapist describes what it's like for children and adults with an eating disorder unlike any other, which causes them to fear food.
For many families faced with Avoidant Restrictive Food Intake Disorder, or ARFID, it can take years to get the proper diagnosis. It was just in 2013 the disorder was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), a handbook used by health care professionals to diagnose mental disorders.
ARFID can lead to potentially life-threatening nutritional deficiencies.
The comments on an ARFID support group Facebook page show how life-altering it can be. People with the disorder posted the following:
"It is as if my mouth and swallowing and eating ability shuts off. I just cannot eat most things. I want to, but I can't."
"Social situations are a nightmare. They all revolve around eating. I feel ashamed of my weird condition so I don't tell anyone."
"You're not just trying to avoid food, you're constantly trying to avoid uncomfortable and embarrassing situations."
"Everything about food is torture for me."
"I eat because I'll die if I don't."
There are also the parents of patients weighing in:
"My daughter, 18, has suffered since childhood. She ended up malnourished at 16. It's horrible."
"As a mom of a 13-year-old boy with ARFID since birth, two things stand out to me. The pain and sadness this disease has caused my son due to social isolation is heartbreaking....As a mom, I have had to think about ARFID every mealtime, every time I pack a lunch, every time we go on vacation or to someone's house. That can be heavy, the reality of it."
First Coast News spoke to a teenager with ARFID, but agreed to refer to him as John Smith rather than reveal his real name.
"It's been really tough because I can't, like, hang out with people who are eating. They can eat whatever they want, but I can't. I can't," he said.
John's friends don't know he battles ARFID. It's something he's been struggling with since the age of 3.
Pretzels, goldfish, crunchy chips, those are what he calls his "safe foods". Mostly beige and crunchy, he only eats about 10 foods. No pasta, no meat, not even peanut butter and jelly.
His mother, who we are calling Karen Smith, said the family just knew something wasn't right.
"He just was not willing to try anything, and he would get very anxious," she said. "ARFID is a true fear of food."
Year after year, Karen Smith took her concerns to his pediatrician, and year after year, she said, she was given the same response.
"She would say don't worry about it, it's just picky eating," Karen Smith said. "Every year it just didn't feel right to me."
Finally, about a year ago, a specialist diagnosed her son with ARFID.
"Now that I knew what it was, and I knew he wasn't just being a picky eater, I was all about just finding the right help. But there are such limited resources that there are long waiting lists and a lot insurance companies don't cover the cost, so it can get expensive," Karen Smith said.
A child with ARFID may avoid certain textures, brands or even colors of food.
"They also have an extreme phobia or fear that there's going to be an adverse reaction when they eat a certain kind of food or any kind of food," eating disorder specialist Sabrina Fichera said.
Fichera, a dietician at Turning Tides Eating Disorder Treatment Center in Jacksonville Beach, said ARFID is much more complicated and serious than just picky eating.
"With somebody with ARFID, their intake is so restrictive they will actually fall off their growth curve so growth and development will become a concern with medical and nutritional aspects," Fichera said.
Unlike other eating disorders, ARFID has nothing to do with body image.
"Fear and avoidance of food often comes from a history of trauma, food related or otherwise," licensed mental health counselor Ashley McHan said.
McHan said, for some patients, it starts with a traumatic event like choking or a food allergy. Parents need to know what to look for, she said.
"When they're seeing their child overwhelmed with stress and fear and anxiety, when they see them debilitated and unable, those are all signs," she said. "If your child is fearful of choking, if you notice gagging and it's consistent, persistent and it becomes a life interference those are really great signs."
And it's not just children who are impacted. McHan treats adults too.
"It's so underdiagnosed because it is new and unfamiliar and people often don't know that it is what they are dealing with," McHan said.
Many health practitioners are still not familiar with ARFID, but help is available and it's important to get it.
"Kids will get to the point where their nutrition is dependent upon supplements and feeding tubes because this can really become so overwhelming to children and even adults," McHan said.
Fichera said treatment is often complicated.
"One of the things that is most daunting is it's not a quick process because you are talking about this connection with the brain and the gut," she said. "You need a dietician, but you also need sometimes need psychiatry. You definitely need a therapist, and it's a it's a team approach in terms of how you treat it."
Treatment can take a minimum of one to two years and can sometimes require inpatient care, Fichera said.
"There's a lot of food exposure and food bridging and kind of getting back to knowing that this food is safe along with the actual therapy component of processing that anxiety and that fear and those phobias around what they believe will happen if they eat food," she said.
For Karen Smith and her son, finally getting a diagnosis was a big step forward. Her son is now getting treatment and seeing improvement.
"It helped me expand what I eat and try different things," John Smith said.
His mom wants those struggling to know they're not alone.
"There are different types of avenues to get help," she said. "Don't give up. Please reach out to other people that are going through it. Not every day is going to be easy, but just take it one step at a time."
The National Eating Disorders Association says people with ARFID can have very different experiences and symptoms, but researchers have found this:
- People with autism spectrum conditions are much more likely to develop ARFID, as are those with ADHD and intellectual disabilities.
- Children who don’t outgrow normal picky eating, or in whom picky eating is severe, appear to be more likely to develop ARFID.
- Many children with ARFID also have a co-occurring anxiety disorder, and they are also at high risk for other psychiatric disorders.
ARFID warning signs and symptoms, according to the association:
- Dramatic weight loss
- Dresses in layers to hide weight loss or stay warm
- Reports constipation, abdominal pain, cold intolerance, lethargy, and/or excess energy
- Reports consistent, vague gastrointestinal issues (“upset stomach”, feels full, etc.) around mealtimes that have no known cause
- Dramatic restriction in types or amount of food eaten
- Will only eat certain textures of food
- Fears of choking or vomiting
- Lack of appetite or interest in food
To get help speak with your doctor, and you can find a treatment provider near you by contacting the National Eating Disorders Association.