The People Who Are Afraid of Food
The restaurant in southeastern Virginia is the kind of place that makes its own fresh-squeezed juices and has kale on the menu in three different places. The waiter lets diners know that any grain dish can be made gluten-free. As he takes orders, the dishes, from octopus ceviche with wasabi dressing to pan-roasted salmon with quinoa and lemon aioli, are complex. Elyse, a 29-year-old sales executive, reluctantly opens her menu and prays. Please let there be a kids’ section. Please tell me they have regular fries.
This is a work lunch for Elyse; her dining companions are prospective clients, and she wants to make a good impression. She does not want to give the speech she’s given a million times, answer awkward questions, or pretend not to notice the puzzled looks that follow after she orders her meal. But Elyse can’t bring herself to eat seafood, meat, or most kinds of dairy. She eats no vegetables and few fruits, unless they’ve been pureed into a smoothie. “I’m almost 30 years old,” Elyse says. “And I still eat like a toddler.”
Most days, Elyse drinks a smoothie for breakfast, has potato chips and chocolate milk for lunch, and makes a tray of potatoes roasted with olive oil, plus another smoothie, for dinner. She also eats bread, crackers, chips, mixed nuts, and popcorn. “It used to be french fries every lunch and dinner,” Elyse says. In high school and college, she went to McDonald’s twice a day, nearly every day, to get fries. “I always wondered what the people who worked there thought of me,” she says. “I mean, they aren’t going to judge you for eating fries, but at a certain point I’m sure they wondered, ‘Does this girl eat anything else?’”
Elyse switched from fries to roasted potatoes when, at age 25, she needed to have her gallbladder removed. She suspects her gallstone developed at least in part because of her fast-food diet, although it may have been hereditary, as other members of her family have needed the same procedure. “I try not to eat french fries too often now, but in restaurants it’s often my only option,” she says. Elyse employs a few tricks to escape notice: She likes to sit in the corner of the table so fewer people have a view of her plate. And she’ll scoot fries around to make an empty space so maybe people will think she ordered a burger and ate it quickly. But there’s no hiding when the food comes out and everyone else at her table picks up their forks. “And I’m sitting there, eating with my fingers.”
Elyse has eaten this way for as long as she can remember. But until a therapist diagnosed her eating disorder last year, nobody knew why. When she was growing up, doctors and family friends told her parents they just needed to be more strict. But when her parents did try to force her to eat, Elyse gagged or vomited up every bite. She avoided sleepovers or birthday parties. Sometimes the other kids’ parents pushed her or thought she was being rude.
“I was always so ashamed of how I ate. When you navigate those weird questions and stares every day, it becomes part of your identity that you are weird and wrong in some way,” says Elyse, who asked me to change her name because she fears the stigma attached to her eating habits. “All my life, I’ve been told that eating this way will kill me. People said I wouldn’t live to age 30.”
Elyse says the people around her making such comments never meant them maliciously. Sometimes it was said as a joke — her pediatrician liked to say that Elyse “lived on air” — sometimes, in desperation, by a loved one who despaired of her food choices. “I suspect, often, they just weren’t thinking about how terrifying and shameful it is for a kid to hear I might die for something that’s ‘all my fault’ but feels impossible to change,” Elyse says. “I’ve never known what it is to not be afraid of food.”
Meg, a 27-year-old married mother of three in Jacksonville, Florida, grew up with a stepmother who often berated her appearance and eating habits. But she says she wasn’t afraid of food until three years ago, after giving up sugar for Lent. “I really had no reason to do it. I’m not a practicing Catholic,” Meg says. “I guess I was trying to fool myself into thinking I was doing it for moral reasons.” In fact, she had already been dieting for months, trying to lose the weight she gained after her second baby, and was looking for something to propel her toward her goal. And it worked — too well. “By the end of Lent, nobody recognized me,” Meg says. “And I realized I couldn’t go back to how I was eating before.”
Meg also started reading about gluten, which led her to cut out bread and other carbohydrates. She began scouring Pinterest for high-protein, low-carb paleo recipes. And she was obsessed with the idea of eating “clean.” “My mom died of brain cancer when I was five, and I have a lot of fear of death,” Meg says. “The deeper I got into this, the more I told myself that eating this way would help me avoid various health issues. Really, I was trying to be immortal.” At the height of her restricting, Meg ate only chicken breasts, protein powder, vegetables, and fruit. “And even fruit I began to get nervous about,” she says. “If I didn’t know how food was prepared, I couldn’t eat it. Nothing seemed good enough or clean enough.”
“I’ve never known what it is to not be afraid of food.”
Meg, who also asked to change her name, says her strict eating habits were possible only because her husband, who is in the U.S. Navy, was deployed, leaving her to solo parent her two small children. “I could feed them normally and then do what I wanted,” she says. “We were fairly isolated.” When Meg’s husband returned at the end of 2015, he barely recognized his wife. “He’d never seen me that small,” she says. “He tried to be happy for me, because I kept saying this was what I wanted. But he was concerned. And once we started having family dinners together, I pretty much had to start eating again. I couldn’t get away with it anymore.”
Getting pregnant with her third child in 2016 furthered Meg’s resolve to diversify her diet. The pregnancy was complicated, and Meg was put on bed rest for six months. “It was a kind of forced recovery,” she says. “I had to eat more for my baby.” Her daughter was born healthy, but Meg frequently relapsed into her restrictive behaviors, especially after giving birth. “I thought I could just start eating some doughnuts and I’d feel great,” she says. “But recovery has been much slower than I thought. It’s impossible to turn off all the information I have now.”
If she got a headache or felt sick, Meg immediately connected it back to a “bad food” she’d eaten. She cut out gluten again for six months last year, assuming it was the cause of frequent headaches. “It turned out to be back issues from all that bed rest,” she says. “But my brain immediately goes to food as the problem.” And unlike Elyse, Meg finds her restrictive food choices validated everywhere she turns. When she told her doctor that she’d eliminated several food groups, he didn’t see it as a red flag. “I wish more women who come in here complaining about their weight would do that,” he told her.
Elyse and Meg suffer from two eating disorders that you’ve probably never heard of but are increasingly common. Elyse was diagnosed last year with a condition called avoidant-restrictive food intake disorder (ARFID). The American Psychiatric Association added ARFID to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013. Symptoms of the condition typically develop in infancy; Elyse says her mom recalls her gagging as soon as her parents began to offer her solid foods.
Researchers don’t know what causes a person to have such intense adverse reactions to the tastes and textures that other people consume with ease. Several studies show that ARFID tends to coexist with other sensory processing problems, autism spectrum disorders, or psychological conditions like anxiety, depression, and obsessive-compulsive disorder. But that still doesn’t explain why some children are able to outgrow periods of intensely picky eating with seemingly little effort, while others become adults who live on french fries.
Meg’s disordered eating may sound like classic anorexia, but some experts in the eating disorder treatment world have begun to classify this type of “clean eating” obsession as “orthorexia,” a term coined in 1996 by Dr. Steven Bratman, an occupational medicine physician now based in Fairfield, California. “I originally invented the word as a kind of ‘tease therapy’ for my overly diet-obsessed patients,” he writes on his website, Orthorexia.com.
“Over time, however, I came to understand that the term identifies a genuine eating disorder.” Bratman defines orthorexia as “an unhealthy obsession with healthy food,” and says that onset and progression of the disorder closely mimic the official diagnostic criteria for anorexia, except that a preoccupation with health and clean eating replaces the fixation on weight loss.
In some ways, ARFID and orthorexia couldn’t be more different. At the height of her restricting, Meg wouldn’t let herself touch a McDonald’s fry, while Elyse feels nauseous at the thought of salad. And the genetic predispositions and neural pathways that make someone vulnerable to these issues may be very different indeed. But the illnesses are both exacerbated by our modern obsession with “clean eating,” where we detox on the Whole30 diet, expect six-year-olds to enjoy kombucha more than Kool-Aid, and need to know how everything on our plate was sourced, grown, and processed.
Because research on both ARFID and orthorexia is in its early stages, it’s hard to say whether these issues have always existed but went unidentified or are now on the rise. In one study, ARFID was found to affect 3.2 percent of Swiss schoolchildren ages eight to 13, according to a representative sample of 1,444 students; across all ages, researchers estimate that the prevalence may be closer to 5 percent. Meanwhile, a survey of 1,007 Germans published in the Journal of Eating and Weight Disorders in March estimated that 6.9 percent of the population met criteria for orthorexia. If those estimates hold, these conditions could prove to affect three to seven times as many people as anorexia and bulimia, which affect less than 1 percent of the population, according to the most recent data.
ARFID and orthorexia may also be increasingly widespread because of the ways we interact with each other and our cultural food anxieties. When Time polled 2,000 parents with children under the age of 18 in 2015, it found that 30 percent of the parents worried that their friends judged how their kids ate, compared with 17 percent of Generation X parents and 11 percent of Baby Boomers. Social media also portrays the sheer act of eating public in a new way, with never-ending pictures of brunch decadence and toddlers eating kale popsicles.
But while the ARFID patient’s fear is internally driven, the orthorexic’s fear is the result of internalizing external messages about food.
We haven’t gotten here by accident. The clean-eating fixation has been coalescing for nearly four decades, happening in tandem as Michael Pollan, Mark Bittman, Morgan Spurlock, and others advocated for eating a whole, unprocessed diet made up solely of things our great-grandmothers would recognize as food. It’s a cause taken up by celebrities like Gwyneth Paltrow — who recently wrote on Instagram that she had never heard of orthorexia, despite having built an online empire essentially devoted to spreading its gospel.
The same time period that brought us paleo pancakes and kale smoothies has seen the rise of the war on obesity, which is its own form of food fear. The belief proliferates that body weight can and should be manipulated through diet, despite mountains of evidence that this approach doesn’t work. But these two movements are increasingly connected and largely dictate the way society at large today thinks about eating and weight.
Pollan’s original mantra — “Eat food. Not too much. Mostly plants” — felt revolutionary when he introduced it in The Omnivore’s Dilemma. But his 2009 follow-up book, Food Rules: An Eater’s Manual, reads more like a series of “thinspiration” posts, with tips like “the whiter the bread, the sooner you’ll be dead.”
Caroline, a 22-year-old artist in Farmville, Virginia, is an extremely picky eater who identifies with the criteria for ARFID, though she has not sought an official diagnosis. Like Elyse, Caroline’s family reports that she was picky from infancy. She has theories about the origin: Her dad is also an intensely picky eater, and Caroline has a form of autism called pervasive developmental disorder not otherwise specified, which she says causes all of her senses to be heightened. “Everything is always trying to grab my attention with an equal amount of strength,” she says. “The air conditioner in a room will be the same volume as the voice of the person I’m speaking with.” Before her parents understood what was going on, Caroline says they once required her, then age four, to stay at the table until she cleaned her plate. “I sat until I fell asleep at the table and woke up there the next morning,” she recalls. “They realized I would out-stubborn them, and after that, my mom just made sure there was something on the table that everyone could eat.”
Later, Caroline’s mom taught her to cook, and today she eats a wider variety of food than many ARFID patients. She loves nearly anything on a restaurant’s breakfast menu and can eat chicken, pork, or snow crab, as long as the meats are plain and unseasoned. But dishes with multiple ingredients or any kind of dressing or condiment are impossible to stomach. Her greatest fear is eating a tomato. “If someone is even just squirting ketchup on their food, I’ll take a few steps back just in case it splatters on me,” she says. Caroline’s roommate once left an open can of diced tomatoes in the fridge. When Caroline opened the door, the can spilled, spattering her with tomato juice and bits. She ran to the bathroom and threw up.
Caroline and Elyse both say they enjoy the few foods they do eat and wish they could break through the fear that holds them back from trying others. But their fear is visceral, almost primal. Caroline has to consciously rotate through her safe foods, because if she doesn’t eat something for a month or two, she’ll suddenly find that she can no longer bring herself to consume it. “My brain just tricks me into thinking certain foods just aren’t food,” Caroline says. “For me, eating a tomato or a beet would be like a normal person having to lick the bottom of a farmer’s shoe. You just wouldn’t do it, because that’s not food to you.”
Researchers don’t know what causes a person to have such intense adverse reactions to the tastes and textures that other people consume with ease.
Jenny McGlothlin is a speech language pathologist who runs a feeding therapy program at the University of Texas’ Callier Center in Dallas. She works with kids struggling with ARFID or ARFID-like symptoms and says that understanding their fear is key to treating the problem. “It’s not just so-called pickiness. They can’t imagine bringing themselves to eat most foods. Not eating that stuff is how they make themselves feel safe,” McGlothlin explains. In contrast, someone struggling with orthorexia could — albeit with difficulty — physically bring themselves to eat a doughnut or a cookie, even though they may have trained themselves to stop thinking of such things as food. “But they can’t let themselves enjoy it, because all they can see is how bad they’re being,” says McGlothlin, co-author of the book Conquer Picky Eating for Teens and Adults. “It’s all about nutrition and what a food will or won’t do to their body.”
Experts tracking orthorexia aren’t yet sure if it’s a standalone eating disorder or just a new way that anorexia manifests itself in the context of today’s food culture. But the obsession with health can be just as strong as any anxiety over body size, which is a hallmark of anorexia. “I’ve had clients that would not meet the criteria for anorexia; they may not be keeping their weight suppressed. But they know the way they are approaching food is interfering with their happiness,” says Anna Lutz, a dietitian who specializes in treating eating disorders at a private practice in Raleigh, North Carolina.
Like ARFID, Lutz says, orthorexia may also be a manifestation of obsessive-compulsive behaviors, which can heighten the need to avoid certain foods. But while the ARFID patient’s fear is internally driven, the orthorexic’s fear is the result of internalizing external messages about food.
That said, ARFID can also be exacerbated by external messages about food, as both Lutz and McGlothlin have seen with clients. “When a parent or a beloved teacher comes along and says, ‘You have to eat your vegetables,’ or, ‘You can’t eat fries because they aren’t healthy,’ that only shames them and further erodes their trust in food,” McGlothlin says. “It’s not just that a certain texture makes them gag. It’s also about the anxiety that gets wrapped up in that experience, because their inability to eat so-called healthy foods becomes so problematic to the people around them.”
For many of the kids with ARFID that McGlothlin works with, even hearing the word “healthy” can trigger anxiety. “Their parents, doctors, teachers, everyone is always using that word with them. And so they start to see food as this strangely corrupt thing that doesn’t make any sense, which makes trying new foods even harder,” she explains. “Suddenly it’s not just ‘Can I bring myself to eat this?’ It’s ‘What if I want to eat it, but it’s not healthy?’”
McGlothlin likes to steer her young clients — and their parents — away from thinking about food as healthy or unhealthy. “I had a seven-year-old last week asking her mom, ‘Is this Jell-O healthy? Is there any Jell-O that’s more healthy?’” she says. “But Jell-O is just Jell-O. It’s not bad or good. It’s fun to eat if you like it.”
Research shows that kids who are able to treat food in this neutral way tend to eat a wider variety of all foods than kids who are given restrictions around treats. And having a broader, more flexible definition of what constitutes a “healthy diet” is an important strategy for preventing disordered eating patterns. “There’s no one healthiest diet,” Lutz says.
In the years when Meg let herself eat only meat and vegetables, she was at her least healthy: “I was tired all the time. And I didn’t get my period for a year and a half,” she says.
Caroline says that although her list of safe foods is short and carb-heavy, her diet stays balanced enough that she doesn’t need many extra vitamins or supplements.
And Elyse runs, hikes, kayaks, and plays tennis, all fueled by her potatoes and smoothies. Needing gallstone surgery at age 25 was difficult, but before and since, Elyse has enjoyed excellent health. “My blood work is always normal, and I have fantastic blood pressure,” she says. “Despite people constantly telling me otherwise, I’m probably in better shape than many ‘normal eaters’ my age.”
Elyse recently devised a new way to handle curious onlookers at restaurants or parties. With the support of the therapist who first diagnosed her ARFID and now treats her for generalized anxiety, she printed up business cards that read “ARFID: Not a choice” and include a short description of the condition. “People with ARFID […] do not choose to be picky,” the card reads. “Most would give anything to be able to eat normally if they were physically able to because such severe food restrictions can be very limiting in life.” But perhaps if our cultural definition of “healthy eating” was broader, Elyse and others like her would feel less limited, or at least less ostracized, by their restrictions. And that might make them easier to overcome.