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My ARFID Story

Updated: Feb 23




Indian food story


Recently I discovered a new Indian restaurant near me and fell head over heels in love with their paneer masala. I couldn’t get enough of it, and I didn’t want to eat anything else. Groceries in my refrigerator went bad as I ordered that masala again and again, day after day, making up excuse after excuse.  “Well, I have a migraine, this will make me feel better.” “I have company coming. I have to show them this new restaurant!” “This is a business meeting. I can write it off!” Then one day I ordered the food, opened the container, looked at the masala, and everything was different—though, arguably, nothing was. It just looked wrong. It smelled wrong. There was nothing I could identify that was different about it, but I could not make myself eat it. All of the excitement, the joy, the comfort of this food was gone, and in its place was complete disgust. “Nooo!” I cried out. My heart was broken. I called to my roommate and asked if he wanted my Indian food. I choked down a protein shake as I watched him eat my safe food that was no longer safe. 


This experience is not rare for me. It is one of the ways that ARFID complicates my life. There are few foods that I can tolerate. I have never been able to handle vegetables or seafood, at least not since preschool. I don’t like tomatoes, or garlic, or flaky pastries, or anything sour. I am trying to eat meat again after over a decade of vegetarianism, but the meat has to be consistent: one color, one texture, definitely no tendons or chunks of fat. I hate leftovers, especially after a day, and if the food is in the wrong container or the wrong person touches the food, it feels “contaminated.” I’ve worked at restaurants: I know my friends' cooking is probably way more hygienic, but my brain tells me that most restaurants are safe and clean, and honestly I hope it keeps lying to me. 


I’ve been told my whole life that I’m too picky. I’m stubborn. I’m spoiled. I’m a pain in the ass. But as it turns out, I just have ARFID. 


What is ARFID?


ARFID, or Avoidant Restrictive Food Intake Disorder, can look very different for different people. There are different types of ARFID, but you can have a combination of types. 


Three subtypes have been described: those who seem disinterested in eating, those who avoid specific foods because of a sensitivity to characteristics of those particular foods, and those who want to avoid having an aversive experience that they associate with eating.


ARFID is most commonly seen in those who have autism, OCD, anxiety, and to a lesser extent, ADHD. Since those with autism and ADHD have differences in sensory experience and interoception, this connection makes sense. 


According to the DSM V, ARFID is a “fairly frequent” presenting feature of autism. It's estimated that two thirds of people with ARFID are autistic, and the percentage may be even higher because many people with autism go undiagnosed.


The association between ARFID and autism is so strong that when I started talking about my ARFID publicly, many people told me that I must be autistic and just not admitting it because I’m ashamed. I’m not autistic, and that’s clearly just a trauma response. However, I think it is fair to say that if you have ARFID, you should look into autism, and if that doesn’t fit, look into ADHD and OCD. And if you are none of those, I’m sorry but you might come across people who don’t believe you. 


THE DSM V describes ARFID as…


“An eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following: 

1. Significant weight loss (or failure to achieve expected weight gain or faltering growth in children). 

2. Significant nutritional deficiency. 

3. Dependence on enteral feeding or oral nutritional supplements.

4. Marked interference with psychosocial functioning.” (For example, avoiding social gatherings, school, friends’ houses, etc.)


Although I do technically meet this criteria, I have never been the vision people are looking for when they think of ARFID. Thanks to hypothyroidism, genetics, and high-calorie safe foods, I have always been overweight, not underweight. My mom fed me vitamins, SlimFast, and various other nutritional supplements, so although I was deficient in a vitamin here or there, it never became noticeable. That doesn’t mean it wasn’t affecting my health—in fact, I developed chronic gastrointestinal disease later in life—but it wasn’t easily apparent at the time. And because my ADHD and dyscalculia were being overlooked, I wasn’t involved with therapists or OTs or anyone who might have seen my eating habits as more than me being a “picky eater.” In fact, my parents brought me to more than one doctor who assured them that my taste buds would change. When I was a teenager, doctors scolded me for my bad eating habits but never acknowledged that those patterns might be beyond my control or something for which I could seek help. _


The message I received over and over was that I was being “bad” by not liking food, and it was up to me to fix this or else I was a disappointment. 


My history 


My mom says I ate everything until around first grade—“And then you got it in your head that food made you vomit, and vomit you did.” This sudden onset is not uncommon with ARFID. I was too young to have a memory of when the switch happened, but since this seems to be the way this disorder often progresses, I assume some experience or biological change set it off. 


It was horrible. Everything was disgusting. My parents tried a variety of tactics. I remember the “you can’t leave the table until you finish your broccoli'' phase,  which ended after a lot of crying and a few episodes of vomiting. Eventually Mom bought a big bag of potatoes, and if I couldn’t eat what she made for dinner, I’d just microwave myself a potato. 


It felt like there were so many things that could be wrong with food. The taste, the look, the texture—if someone had touched it, or if it was in the fridge too long.


I remember being so sensitive to taste, I wouldn’t eat anything my dad made because he used a lot of garlic and it felt like everything he made tasted like garlic—even waffles! I also remember getting Taco Bell on a family road trip once, and being so excited because it was rare that we got fast food. I got a double decker taco—no lettuce—bit into it, and immediately threw up. One single shred of lettuce had made it into the taco, and the horrific crunch that I felt between my teeth created a full body reaction. My parents were so angry. I couldn’t understand how they could be so angry about something I could not control. What did they expect me to do? I was the one who had to endure the evil lettuce shred. I was the one who threw up, who didn’t have a taco. Why was I also getting yelled at?


I felt isolated at family gatherings. I remember my uncle making fun of me for only eating things that were beige, not knowing that this is a common joke in ARFID communities. I didn’t want to sit at a table with only a bread roll on my plate at Thanksgiving or Christmas, fielding comments and criticisms, so I would sneak away and eat alone in my room. I also avoided eating at friends’ houses. It was so embarrassing having to decline food and seeing people’s hurt or offended faces. And it still feels like an arrow to the heart. In our culture, food is care. Food is community. I felt isolated from both. 


In middle school my ARFID got worse. I ate almost exclusively Skittles and plain baked potatoes, with an occasional frozen burrito or Kraft mac and cheese. Some Friday nights we would order pizza and get snacks like Doritos, which I would devour ravenously while my parents berated me for my unhealthy eating habits. The only thing stronger than the shame I felt was my desire for the comfort and stimulation the snacks gave me. Thinking back on my younger self, I have such empathy—“You were probably so hungry!”


My freshman year of high school my friends had a mini “intervention” for me, because they thought I was anorexic. “We never see you eat,” they said. I was shocked. I hadn't even noticed. I always felt like I was eating too much because when presented with a food I actually liked I often couldn’t stop eating it. “I’m just not hungry,” I told them. And it was true. I wanted candy or crunch for the stimulation—but never felt hungry. So if the foods I wanted were “bad,” I figured it was better to just not eat at all. 


When making a diagnosis, doctors often rule out ARFID if the person has a distorted body image—the idea being that if you are restricting food for weight loss reasons, it is some other disorder, not ARFID. But now there is also a diagnosis of ARFID Plus, in which a person with ARFID develops features of anorexia.


In our society—especially for women—how can we not be concerned about weight and body image? It is not uncommon at all for other eating disorders to start to pile on, as the constant comments on what we are eating burrow into our consciousness.


What I don’t see talked about enough, though, is how someone can have ARFID and binge eating disorder. Had I not seen others on social media talking about this seemingly contradictory combination, I would not have felt confident speaking to my doctor about ARFID. You can restrict the types of food you eat, and even at times restrict the amount, but then binge on a safe food. This pattern of not eating and then binging is one seen often in the ADHD + autism communities because of our struggles with interoception and not recognizing when we are hungry or full. 


Through my teens and twenties, I dabbled in anorexia, bulimia, and binge eating, losing and gaining 60+ pounds in one- or two-year cycles. When I was eating as few as 800 calories a day, I was told by doctors that I needed to eat less to lose weight, because my BMI was too high. They thought I was lying about my calorie intake, but because I have hypothyroidism and my body had adjusted to years of undereating, my weight loss always plateaued quickly. I was told I needed to cut out carbs, which was the majority of my diet, so for a few years I ate mostly Quest bars and string cheese. As I starved myself, I was praised by my family and friends for my weight loss. I still didn’t feel hungry—in fact, food often disgusted me—but I must have been extremely malnourished.


During this time I also sought help for my “picky eating.” My goal was to be able to eat vegetables. If I could eat “good” food, my problems would be solved. But years of dieticians, therapists, hypnotherapists, and antianxiety medications never got me much closer to my goal of eating vegetables than keeping down a single baby carrot. 



Over time, though, I did find tools and strategies to get more nutrition in my body. I started drinking smoothies every morning and packing them full of powdered vegetables and protein, and anything else I could mask the taste of with frozen berries and cranberry juice. I still have those smoothies every morning. Most importantly, all of that therapy helped me reduce my anxiety around food. It helped me accept that this is how I am and it doesn't make me a bad person. Eating vegetables is not a moral act, and it was those who shamed me who had been in the wrong, not me. Granted, most of them thought they were helping me, but many of us bear the scars of the damage done to us with benevolent intent. This self-acceptance allowed me to be less defensive and more curious about my eating habits. Slowly but surely, I’ve been able to eat a variety of new foods. I can even tolerate veggies if they are pureed and well seasoned, so chilies, masalas, and other tasty goo I can dip carbs into are a staple in my diet. 



The first time I met someone with ARFID, I was doing respite care for autistic children. It seemed common among these kids to only eat a handful of foods, and to become distraught when the food was not as expected. Many families accommodated their kids happily, but in others I saw the confusion and frustration I had seen in my own parents, and the assumptions of “spoiledness” or “stubbornness” I had been fending off my whole life. It felt good to be able to explain to these parents what their kids might be experiencing, especially because many of these kids were non-verbal or paraverbal and couldn't explain it for themselves. I could defend them in ways I wasn’t able to defend myself. I also gave advice on ways to sneak in nutrients that would be likely to be palatable—like the best-tasting gummy vitamins and omega-3 that doesn’t taste like fish. As healing as this was, none of these families had a word for this, nor the big “cure” I was seeking.  



It wasn’t until my thirties that I first heard the term ARFID. 


I didn’t first encounter the term through professionals—doctors or dieticians—or in communities with shared experiences. The first time I heard people talking about ARFID was on TikTok. 


At the beginning of the pandemic, I started a TikTok to educate people about ADHD. I absolutely loved (and still love) getting messages from viewers telling me that my content had given them an answer to something they had been searching for their whole lives. And here I was simultaneously having the same experience watching people on TikTok talk about ARFID.


ARFID! It has a name! I have ARFID!


I’m not “picky.” I’m not “stubborn.” I’m not “spoiled.” 


I might still be a pain in the ass, but it's not my fault because…


I have ARFID!



Now what?


I did what any self-respecting ADHDer would do: I hyperfixated on ARFID and read every article and watched every video I could get my hands on. Here are some of the things I discovered.



ARFID stats and general info


According to the University of Gothenburg in Sweden:


“ARFID is a new term but not a new condition: Although this type of disordered eating has been around for many years, it was not until 2013 that it was given the official diagnostic title of ARFID. Before that, other terms and diagnoses have been used to describe it, including eating disorder not otherwise specified (EDNOS), feeding disorder, picky eating, anxiety disorder not otherwise specified. In the absence of a better alternative, some people with an ARFID-like eating disturbance might have been diagnosed with anorexia nervosa, even though they were not restricting their food intake because they wanted to be thin or were afraid of gaining weight.”

The prevalence of ARFID in the general population is still somewhat uncertain, but it is likely somewhere between 1% and 5% in children and adults. Diagnosis is much higher in males than females, but I would guess that many females go undiagnosed or are diagnosed with a different eating disorder.


That’s a lot of people and a serious issue, especially considering more than half of those diagnosed with ARFID will require inpatient hospitalization.


Aside from malnutrition, those with ARFID may suffer other health issues. For example, ARFID symptoms are frequent in patients presenting for symptoms of gastroparesis and other gastrointestinal disorders.



According to the Eating Recovery Center, “The causes of ARFID include genetic, psychological and sociocultural factors, as well as biological. There is no one single cause of ARFID. Understanding the causes of ARFID can guide treatment, based on each individual's symptoms and progress.” https://www.eatingrecoverycenter.com/conditions/arfid



Some people develop ARFID because of a negative experience such as choking or eating something rotten, and others seem to have no direct cause at all. Some ARFID is related to anxiety, and some is more about sensory avoidance. This is why ARFID is thought of as an umbrella term. It is important even after an ARFID diagnosis to discern the cause and the individual experience in order to find the best treatments.



Where to get help


Depending on your individual experience with ARFID, a dietician, nutritional counselor, therapist, occupational therapist, or even a speech language pathologist can provide helpful support. Cognitive behavioral therapy and exposure therapy are commonly used. Inpatient and outpatient treatment is available if needed. There are also a lot of resources for parents with instructions on how to support your child at home. 


Many people with ARFID also need medical care for malnutrition or related conditions.


Personally, working with therapists, including two hypnotherapists, helped me in dealing with my fears and anxieties around food, and allowed me to open up to trying new things. Working with dieticians helped me learn how to get my nutritional needs met even within my limitations. They also helped me manage my supplementation. I take a lot of supplements, and it’s important to make sure my body is actually absorbing the nutrients and getting the right amount. 


If you need immediate support or resources, either for yourself or a loved one, I encourage you to contact an eating disorder hotline. These hotlines are staffed by trained professionals dedicated to providing support and information for anyone with an eating disorder, including ARFID. I recommend contacting the Alliance for Eating Disorders (1-866-662-1235 or allianceforeatingdisorders.com) or the National Eating Disorders Association (1-800-931-2237 or nationaleatingdisorders.org). In addition to providing referrals and practical help, they also listen and provide emotional support.


Big picture


If you are hearing this and thinking “First world problems” or “These picky kids would die in another place/time”—these kids are dying now. I don’t know how much our current society impacts this disorder. I don't know if it existed 100 or 500 years ago. I don’t know how much ARFID is impacted by the existence of packaged processed foods or too much sugar or dyes. I just know that when talking about these questions, it seems to put some kind of judgment on the child, and a lot of blame on the parent. And I don't think that is fair or helpful. 


I don’t doubt that the unhealthy nature of our society contributes to unhealthy eating, and that large systemic change is needed in this and a million other areas of our lives. But how do we help people struggling in the meantime?


There is still a lot we don’t know about ARFID, and a lot of research needs to be done. However, what we do know is that recovery happens with understanding and accommodation—with gentle exposure and a healthy amount of autonomy. We know it is a real condition that needs real professional support. No amount of forcing or shaming or eye-rolling is going to help anyone eat better. 


Acceptance


Naming and understanding this condition has made a world of difference for me. Thanks to knowledgeable professionals and advocates, those sharing their stories on social media, and those taking the time to write books and articles about ARFID, millions of kids and adults are getting the help they need. 


As powerful as naming and categorizing can be, I feel that we need to move toward a place of overall acceptance of individual needs and experiences.


Your needs are valid even if no one understands why you have them. 

Your needs are valid even if there is no else who has them.

Your needs are valid even if there is no label or category for those needs.


The fear of not knowing can cause shame inside of us that we may shift onto others. My parents’ fear and shame that they were parenting me wrong caused them to put fear and shame on me. The doctors' fear and shame that they did not have an answer to my problem caused them to put that on me. The confusion and discomfort experienced by my teachers, my friends and their parents, and my family, was expressed in harmful shaming that affected the rest of my life.


The concept of neurodiversity means that we all experience the world differently, and there is no wrong way to be a person. By simply extending compassion for ourselves and others, even when we don’t understand, we can reduce the pain and shame that so many feel before a diagnosis or a label. 


Regardless of why we are struggling, we all deserve understanding and support, even if it seems like you are “just a picky eater.”

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תגובה אחת


Adrienne A
Adrienne A
20 בינו׳

Passing this along to a friend in college , who has ASD and a history of an eating disorder

לייק
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