My Lifetime of ARFID

Hey, I'm Stephanie, practice owner at Food Wonderful, and I'm here to introduce this post.

Over the last few years, our practice has noticed an uptick in requests for providers who work with young kiddos with ARFID. While our team member Allison Rieck, MS, RD, LDN is very skilled in working with teens and adults with ARFID, there is still a gap in support for kids under twelve years old. And this isn't just a gap in what we can offer at Food Wonderful. There are shockingly few resources for kids with ARFID in the Chicagoland area.

So I was beyond thrilled when Jessica Nelson, RDN, LDN, who specializes in working with kids (as young as 5 years old), teens, and young adults with ARFID, decided to join our team.

And, when one of our adult clients who has struggled with ARFID since childhood, heard that we'd be adding a pediatric ARFID specialist to our team, she was so moved she asked if she could write a post for our blog about her own experiences.

This is what she shared:

When somebody asks me about mealtimes when I was a child, I can hardly remember a meal that didn’t include a complete meltdown.

In fact, one of my earliest memories is when I was about four years old sitting across from my mother, refusing to eat the scrambled egg she had made. Or when I was about seven, having an uncontrollable outburst in a Mexican restaurant. My older sister, who has always been a polar opposite sat, smugly willing to eat almost anything put in front of her. But for me, sitting there unable to eat, I was told that I was disobedient, defiant and ruining my family’s evening.  

It was the 1990’s and the conventional wisdom was that I would eventually get hungry enough to eat what my parents put in front of me. And that I’d grow out of my picky eating in time.

Neither was true.

If the option was to eat something I didn’t like or to go hungry, I would choose to go hungry every single time. Not that that was a comfortable choice. I wanted to eat! I was a growing kid, I was hungry, sometimes so hungry that I felt sick. And I was jealous of my sister, who seemed to eat and enjoy most foods without stress. What was that like?! To be excited to eat? To not be wracked by constant hunger?

And I didn’t grow out of it either.

ARFID, or Avoidant Restrictive Food Intake Disorder, wasn’t recognized as an eating disorder until 2013.

And I didn’t get my diagnosis until 2021, well into my 30’s. Suddenly I had language to describe what I’d felt my entire life. This was so much more than picky eating. For me, it’s sensory overwhelm. It’s a complete flooding of my nervous system. It’s fight or flight happening at the dinner table. My childhood outbursts? I’d been overcome with feeling so intense I couldn’t possibly express what was happening. I couldn’t understand. My parents seemed to refuse to understand. So, instead of being met with compassion, I was labeled as difficult and dramatic.

Even when I became old enough to purchase and prepare my own food, the selection never varied much. It isn’t that I prefer packaged foods or fast casual restaurants exactly, but I do gravitate towards them because they are very predictable. I know the taste and texture are not going to vary. I know how much guac is going to be on my Chipotle burrito bowl and I know the guac isn’t too spicy. I know how crispy my waffles will be after 7 minutes in the toaster oven. For me, having foods that are as boring and as bland as possible is reassuring in a way that others won’t understand.

Side note: Sometimes food companies change their recipes. Maybe it’s a supply chain issue. Maybe it’s just a recipe update. But, for the record, this can be intensely distressing for folks with ARFID!

And here’s the part that always throws people for a loop: It’s not that I’m unwilling to try new foods, it’s that despite my trying, l never develop a liking. It’s the texture, the smell, or even sometimes the look of the food. It’s the way my body reacts to it, affirming that this food is a hard no. There is neurobiology that explains why this is but I cannot outthink my brain.

This has led to nutritional deficiencies, social interactions being a challenge and lifelong struggle to simply exist around food. Most meals are very stressful. My body does not like how food feels. Feeding myself feels like a chore. And hunger is a moot point, if hunger is the gas and the stress around the food is the brakes both are always being pressed and the car doesn’t move.

What looks like control from the outside is, from the inside, a lifelong negotiation with a body that doesn’t experience food as neutral. Food is scary. It’s been scary for my entire life.

And this, this deep-seated and life-long terror around food is where I wish my parents could have intervened when I was a kid. Maybe if I had had some support, a team to work with me and my parents, I could have developed strategies to cope with my ARFID sooner. I often wonder: if I had been met as a child with calm, compassionate support instead of judgment, what might my relationship with food look like now?

Now that there is name for what I couldn’t articulate, I have some hope that children today who struggle with eating, whether picky eating or with ARFID, can get the understanding, patience, and gentle guidance I didn’t. 

ARFID isn’t hopeless, not at all. But it can be very challenging. And support can make all the difference.

Thanks for reading.

If you or a family member is struggling with picky eating or ARFID, please know that support is available. Please contact us at heythere@foodwonderful.com for help.