I am two years old, looking skyward at the flashing reds and blues of ambulance lights. My mother has just given me my first ever peanut butter on toast and now she and I are learning of my peanut allergy the hard way.
Three years later, we return to BC Children’s Hospital for blood tests. The results, the doctor informs me, seem to show that my allergy, miraculously, is no more. To be completely sure, the medical staff request that I eat a Reese’s Peanut Butter Cup. Then another. And another still.
For many, the peanut butter cup represents a delicious morsel, the perfect combination of peanut butter and chocolate. But as I bite into it, the foreign flavour spreading over my taste buds, waves of panic surge throughout my body.
I throw a screaming temper tantrum that lasts hours. This food had once nearly killed me. Why was I eating it now?
"It was the worst day of my life," my mother told me. "It was like we were torturing you."
Still, the tests confirm that I’m cured. I become a miniature celebrity at the hospital. The doctors’ excitement even lands me on the morning news a couple weeks later as British Columbia’s first recorded case of someone outgrowing an allergy. The next day, my kindergarten teacher says she saw me on TV. Clearly, I think to myself, something about me is different. But what?
I now know that something snapped the day of my allergic reaction. My developing brain decided that anything I hadn’t yet eaten could be my demise, and ever since, I have suffered from Avoidant/Restrictive Food Intake Disorder, or ARFID.
It’s a rare anxiety disorder that causes people to develop a strong, fearful aversion to certain foods based on characteristics like texture, flavour or colour, prompting a physical response that makes eating them impossible.
Today, I mostly get by on chicken strips and fries, cold cereals (without milk), plain pasta with butter and Parmesan cheese, endless bread products, and a variety of snack foods that would make a nutritionist openly weep.
People who open my fridge often laugh — currently, all that sits there are milk, cheese, a stick of butter, a bag of raw baby carrots, enormous containers of ketchup and apple juice, and a couple of beers. Surprised that I drink alcohol with such a limited diet? I honestly believe that I forced myself to enjoy it to counteract my social awkwardness surrounding food.
Yes, I recognize that a pizza or hamburger won’t kill me. But I can’t seem to overcome my mental blocks. If I try to eat anything unfamiliar, my body freezes up. On the rare occasion that I actually overcome the initial shock, a strong gag reflex will send any food right back.
I have had to learn how never to get tired of eating the same things every day, to manage nutrition by stocking up on multivitamins and to constantly plan ahead so I don’t have a nervous breakdown in front of my friends. It might seem strange, but it’s all I know.
Before I share what it’s like to eat, live, work and love as a person with ARFID, let me also point out that I do all this in a world obsessed with food. You can’t go about your daily life without food advertisements being, well, shoved down your throat.
"Relatable" memes course through the Internet showing people with nothing on the brain but bacon, or coffee, or cookies, or ice cream. Competitive cook-offs fill the airwaves. And, of course, there is that moment when you’re out socializing with your friends and the conversation grinds to a halt as everyone pauses to post their meal on Instagram. "The camera eats first," as they say.
Please remember: if people with ARFID are weird about food, well, so are you.
‘Mentally, I shut down’
An ex-girlfriend of mine kept saved on her computer a document titled, simply, "Stuff Ben Eats." Creating the document with her was the only time I really sat down and thought hard about the full extent of my diet. There are only 17 bullet points on the list, though some are families of foods such as "chips and crackers and things." My favourite note is her quizzical "apples and pears and uhhhhhh strawberries I guess."
To explain, strawberries are one of a couple foods that I ate at a younger age and I know won’t kill me, but I’ve abandoned because I prefer foods without such a strong flavour. To me, a strawberry is equivalent to a habanero chili pepper.
Most people with ARFID have similar lists of "safe foods," usually including a lot of dairy and bread products because of their mildness, softness and lack of texture. Even the "wrong" brand of a product can trigger terror. For a long time, I would only accept chicken strips if they came in a box marked Jane’s. I’m a bit braver now.
We ARFID people are few and far between. A recent Swiss study reported that just 3.2 per cent of individuals from ages eight to 13 showed symptoms, with boys about twice as likely as girls to develop the condition. Many youths grow out of ARFID, making adults with the disorder even more rare. Prior to researching this article, I’d never spoken to someone else with ARFID.
The condition frequently develops because of a traumatic childhood experience related to food or choking. My own story ticks both boxes. In addition to the peanut butter incident, I was born with the umbilical cord wrapped around my neck — from day one, the universe had it in for me.
ARFID sufferers often also have additional conditions that make it easier to develop anxieties and phobias. The most common are autism, which can increase sensitivity to textures, as well as obsessive-compulsive disorder and attention deficit hyperactivity disorder, which typically involve intense focus on details and routines.
"Your biological predisposition is like a cup," says Alexandria Butterfield, a registered clinical counsellor who specializes in adults with ARFID. "For some people, the cup is low in water. For other people, it’s nearly at the top, and then something happens — like a traumatic event — and that’s what tips the water over and causes it."
ARFID was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a consulting manual for psychiatrists, in 2015. The Canadian Paediatric Surveillance Program currently reports that 63 per cent of pediatricians are still unfamiliar with how to diagnose ARFID.
When you have ARFID, various senses might signal alarm. For me, it’s smell. If I raise an unfamiliar food to my mouth, its odour activates my gag reflex before I even attempt to eat it. I’m a lot more open to trying drinks, but there’s something about the smell of coffee and wine that I can’t stand.
Bianca Verjee of Vancouver, a 23-year-old living with high-functioning autism, says she reacts most strongly to the way a food feels in her mouth. "You see lower-functioning kids, and they’re sensitive to light or loud sounds. I have those sensitivities, too, but I can kind of control my behaviour. For most people on the autism spectrum, their food sensitivity will have to do with texture."
The most anxiety-inducing thing of all for her? "Finding something crunchy in something that’s supposed to be soft."
It’s texture, too, for Thomas Farias, a 21-year-old from Modesto, California. "I physically can’t do anything overly mushy, like a banana," he told me, making a retching noise.
Whatever sets off our ARFID anxieties, we all share a physical reaction well explained by Dorottya Nizalowski, whose is 23, from Budapest. "Mentally, I shut down. I can compare it to when you know there’s a bee on you, and you start to freak out trying to get rid of it before it stings you."
Peter Brown had that experience broadcast nationwide. Brown was a contestant on the inaugural season of Big Brother Canada in 2013. Throughout the reality TV show, Big Brother producers give the contestants difficult tasks to complete, tied to rewards or punishments. Brown’s challenge: Eat a salad.
"I knew I had to do my task because of my love for the game, no matter how uncomfortable it made me," he told me. "I know that production didn’t realize how limited I truly am. I forced down the salad in the short timeframe I was given and immediately involuntarily threw it back up after the clock expired." Because Peter Brown has ARFID.
Last summer, I tried a form of exposure therapy. After weeks of simply talking with me about my anxieties, my psychiatrist requested that I try whatever new food I felt I could most easily see myself eating.
I chose pizza, because I see it on most ARFID sufferers’ lists of safe foods, and it is composed mostly of ingredients, like bread and cheese, that I already eat. We walked to the nearest Domino’s and bought a slice of plain cheese pizza. I cut off the tiniest sliver, stared at it for a couple minutes, and with enough encouragement from the psychiatrist, finally managed to eat it. That was enough to make me feel physically ill for the rest of the day. I never went back to that psychiatrist.
Still, it was one of my better experiences with treatment. In earlier years, medical professionals were less careful in how they prodded me to eat. They assumed, like most people do, that I was, essentially, an extremely picky eater who could change with enough focused work.
"Just try it, you’ll like it" is a phrase I’ve heard my entire life. Sorry, no. I won’t.
Many people pity someone who can’t see food as a delicious, fortunate aspect of life. Allow me to turn the tables for moment. In this food obsessed society, my condition grants me a certain detached perspective. I see food as fuel, period. So, at dinner, as I patiently wait for a friend to snap a picture of his meal, I confess I’m kind of annoyed, because I am there for the company and the conversation.
And when that picture lands on the friend’s Instagram page, I see it taking up space that could have been filled with images of amazing places visited, moments caught laughing with friends, chance encounters with nature’s beauty. Instead, cannelloni.
I get that restaurants want us to appreciate elaborately prepared food as art. But I want art to reveal something personal about the artist, to help me see inside her mind or even soul. Can even the best prepared dish achieve this?
But food connects us to other cultures, you may say. Yes, and I crave chances to do so. Latin hip-hop has become one of my favourite new musical genres, and tonight I am going to see a Polish film because it was nominated for Best International Film at the Oscars. I have money to spend on such experiences because when food is purely functional, you buy what’s cheapest.
None of this is to say I wouldn’t be very happy to shed my symptoms tomorrow. Butterfield says there’s now a big push to better understand ARFID, even if still there’s little idea of how to treat it.
A Google search of ARFID treatments in Vancouver mainly turned up websites with factually incorrect information, many of them worded as if the reader must be the concerned mother of a child. Until very recently, some treatment facilities in B.C. focused only on female patients due to the stereotype that girls and women are far more likely to have eating disorders.
To date, studies suggest that the most help can be found through simple conversation with other ARFID sufferers and going through exposure therapy in focus groups. Because ARFID can take many forms, finding a universal treatment is elusive.
Butterfield says the biggest step forward would be to teach families about how to care for a child that starts showing signs of ARFID. "If the deeper issues in the anxieties aren’t addressed, it’s not going to get better," she says. "It’s like any mental illness. That’s why there are so many relapses in eating disorders, and a really hard time in recovery. You’ve developed this as some form of coping mechanism."
‘Buddy, you gotta eat’
In September 2019, the Guardian published an article about a British teenager with ARFID whose diet consisted exclusively of French fries, potato chips, ham and bread. He lost his vision due to a lack of nutrients. People with ARFID do tend to rely on truckloads of vitamins and supplements, but most ARFID diets aren’t limited enough to lead to such serious health problems. The article went viral, commenters seemingly astounded that he or his parents didn’t intervene and make a change before it was too late.
If only it were that simple.
At least ARFID is becoming better known. It’s getting easier for me and others to explain what it is we have, instead of making up excuses like "I already ate," or "I’m weird with food."
For Megan Self, the mother of an autistic seven-year-old boy, just learning the term completely changed her parenting. She first heard ARFID being discussed on the podcast Terrible, Thanks for Asking. Before discovering her son had a medical condition, she "thought it was all in his head," she said. "My husband was a little worse about it. He's like, ‘Buddy, you gotta eat. You have to try it.’ And my son is absolutely freaking out and making the night terrible so I quit messing with him."
These days, Self understands better how to support her son. She rues the time "we kind of guilted him into trying a peanut butter and jelly sandwich. Thinking about it now, I feel really bad about threatening him with a feeding tube."
Thomas Farias and I shared a laugh over something we both experience often — being the difficult one when a group of friends want to hang out together and eat.
"My friends are always annoyed because they’ll want to go have sushi or something," he said. "And they either have to uninvite me or change it to somewhere I can find food to eat." We’ve seen even the chef get irritated. "I felt super bad, because I’m a big fat dude sitting at a restaurant not eating!" Farias said. "I was like, ‘Oh no, it’s nothing against you. It’s something wrong with me.’"
Less easy to laugh off is how ARFID can make romance difficult. I’ll let ARFID celebrity Peter Brown take this one: "There’s a standard ‘wine and dine’ element to dating," he said. "I can usually find one thing on the menu I’ll eat in a general restaurant, but I basically can’t eat at really fancy places where meals usually come in courses. I definitely have had anxiety in the past with eating at a girl’s parent’s house, because if I don’t like what they’re offering, then I fear that I come off as rude, ungrateful, inadequate or immature."
When I was 17 and feeling alone, finding Peter Brown there on TV gagging on his salad was a great solace to me. Since then, I have connected with several others with ARFID and we share over the phone and internet our strange circumstances and ways of coping. That new feeling of community gives me strength. I know getting over ARFID is going to be a long internal struggle. I know I have to keep fighting. I find hope in the fact that research and awareness is increasing.
I know I am not what I don’t eat.
For now, though, I’ll be happy with my chicken strips and fries.