More Than Picky Eating: My Daughter's Experience with ARFID

By Stephanie Elliot 03/01/18

Her anxiety and depression had elevated, she was becoming anti-social, and she was having panic attacks. We had to figure out what was wrong.

A serious woman sits with fork and knife and empty plate
ARFID is an actual eating disorder characterized by extreme fear and anxiety regarding certain foods.

The day my daughter took a bite of a grilled cheese sandwich I cried. She wasn't 2 years old trying something new for the first time, she was 15. She had been fighting an eating disorder her whole life and this moment was more significant than the day she took her first steps. She had come a long way.

For her entire life, my daughter was considered a “picky eater” and would only eat a small menu of foods, one that didn’t include meat, vegetables, most fruits, or protein. She was surviving off mostly “white” foods like breads, French fries, chips – things that were high in carbs and low in everything else.

When she was 7 or 8, we realized that her specific likes and dislikes were more than picky eating. Because of her anxiety around food, family meal times were difficult, with a lot of begging, pleading, bargaining, and bribing. Going out to dinner or attending social events as a family was nearly out of the question. When we would venture out, I would pack a peanut butter sandwich and raw carrots so she would have something to eat. It was the best we could come up with at the time.

When I mentioned my worries about her eating habits to the pediatrician, I was told that she was fine, totally normal. Her weight was on track for her age and height, so the doctor brushed away my concerns. Not satisfied, we searched for answers. We took our daughter to a nutritionist, a therapist, even for testing for other sensory disorders that might be affecting her. She didn’t present as anything but a normal “picky eater.”

But the doctors didn’t see our home environment, how I had to have specific foods on hand at all times so there would be something for her to eat: plain waffles, Goldfish, bagels, apples with no peel, raw baby carrots. They didn’t see how she ate the same items day in and day out. The doctors didn’t see how every time we tried to get her to eat anything different, there would be drama and tears. They didn’t see that my daughter declined invitations to birthday parties or sleepovers because of the fear of someone asking her why she didn’t eat, or worse, forcing her to eat something she wasn’t comfortable eating.

All the doctors saw was a young girl who appeared, on the outside, to be healthy by their assessments.

She was not.

Finally, when she was 15, we decided we needed to look elsewhere for answers and we made an appointment at an eating disorder center. In my heart, I knew that she wasn’t just a picky eater. Her anxiety and depression had elevated, she was becoming anti-social, and she was having panic attacks. We had to figure out what was wrong.

We met with a specialist who worked in eating disorders and recovery. She told us that my daughter had ARFID. I had never heard the acronym in my life. It stands for Avoidant/Restrictive Food Intake Disorder, which, up until only a few years ago, was a term that didn’t exist. But now, ARFID is listed in the DSM-V as a mental disorder.

People with ARFID literally fear eating. Most often it stems from a childhood trauma related to food – a choking incident, or vomiting, reflux, etc. Sometimes, ARFID derives in utero, either from trauma during the birth process (umbilical cord around the neck), or through a difficult labor. It is a sensory issue where the person cannot tolerate the taste, smell, even the look of certain foods. It’s admittedly difficult to understand how someone could be repulsed by some foods that are so good to eat, but it’s legitimate. When someone is diagnosed with ARFID, treatment is necessary.

We got our daughter treatment, which was a combination of somatic experience therapy, one-on-one therapy with a doctor, group/peer therapy, food graphing, and eventually, dinners out where she could test the skills she learned. After 20 weeks of intense outpatient therapy, she was able to try new foods without gagging, and she even enjoyed some of the things she was trying. Before treatment, she would never eat for pleasure.

The bigger piece for us was the anxiety and depression that was wreaking havoc on our daughter’s social and personal life. She was in high school; she should be going out with friends and participating in fun events and having new experiences. Instead, she had alienated herself from everyone so she would not have to confront the questions about why she didn’t eat. It was just easier for her to avoid the situations. But it was not a healthy way for a high school girl to live. With time, she learned to release her anxiety (through somatic touch therapy which works to regulate the nervous system), which enabled her to learn to be comfortable around foods.

It wasn’t an easy process, and there are times I still worry, but it’s been three years since my daughter went through the therapy program. Her life has changed; she can go out to eat with friends and is no longer exhibiting signs of depression. She has learned how to calm herself so she is less anxious, and is generally a happy young woman who is open to new foods and experiences.

ARFID took hold of my daughter’s life and affected our whole family for years. Research on the most effective treatment is ongoing, and thankfully, more doctors and healthcare professionals are learning what it is and how to diagnose and treat it. If you or someone you know exhibits some of the traits of ARFID, start looking for help.

If we had not discovered that my daughter had ARFID, I honestly don’t know what kind of life she would have today. It would have been one of seclusion, fear, and loneliness. Now, she is recovered and enjoying the little things in life. And sometimes, all that means is eating a simple grilled cheese sandwich.

Find out more about ARFID at the National Eating Disorders Association.

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Stephanie Elliot is a book editor, essayist, and the author of Sad Perfect, a young adult novel based on her daughter’s journey through ARFID/Avoidant Restrictive Food Intake Disorder. She lives in Scottsdale with her husband and three children. Check out Stephanie's Instagram or follow her on Twitter.