I Have An Eating Disorder You’ve Probably Never Heard Of

I’m a grown woman and I’ve never eaten sushi. I’ve never tasted avocado or grapefruit or chicken wings or pickles or yogurt and, not to rock your world, but I’ve never had a cup of coffee. In fact, the list of foods I’ve never eaten is far, far longer than the list of those I have.

For most of my life, I had no idea why the thought of eating many foods would make me gag. I knew I wasn’t a garden-variety picky eater, but until very recently, I wasn’t aware that there was a name for it.

Now I know better. I have ARFID (avoidant/restrictive food intake disorder), an eating disorder that used to be called SED (selective eating disorder). In simple terms, it’s a food phobia in which swallowing certain foods, or even thinking of swallowing them, leads to undesirable outcomes like the throat involuntarily closing, retching and vomiting.

My eating disorder began when I was a child. My family would go out for Chinese food and I would only eat white rice. Slightly older, I graduated to egg rolls, but only the outside. I have vivid memories of my father scraping out the cabbage filling and handing me the empty shell.

I have a particularly traumatic memory of facing off with my father over some pan-fried liver. I was young, probably no more than 6 or 7. I was anemic and my mother prepared the liver to help with my anemia. But I refused to eat it.

As I sat across the table from my father, he told me, “We’re going to sit here until you eat this. And if you don’t eat it tonight, I’ll serve it to you for breakfast. And it will be cold.”

He eventually gave in, but my victory was not sweet. I had no way to explain what I was feeling at the time. I wasn’t a willful child, but I knew I’d never be able to swallow the liver.

As I grew, more foods were added to my repertoire, but the list of foods I refused to eat was always longer.

Significantly longer.

Picky eating is common enough among children, but when I became a mother myself and I didn’t know anyone else like me, I started looking for answers. I contacted a university professor who conducted research on picky eating in children. He referred me to one of his graduate students who had done research on picky eating in adults.

As I grew, more foods were added to my repertoire, but the list of foods I refused to eat was always longer. Significantly longer.

In her dissertation, I read about adults whose entire diet consisted of fewer than 10 foods. I knew I wasn’t a normal eater, but I wasn’t quite that restrictive. She also found statistically significant associations between her subjects and a range of neurological and psychological issues, such as autism and OCD, from which I did not suffer. Her dissertation was interesting, but it didn’t represent me or give me any insight into my own behavior.

Then, a few years ago, I stumbled on a Facebook support group for picky eaters. I was astonished by what I discovered there. Not only were there other adults like me, there was a whole community of us. There was an actual name for the behavior I thought was so idiosyncratic. Naming it was a great relief.

ARFID is a relatively recent addition to the DSM-V, the fifth edition of The Diagnostic and Statistical Manual of Mental Disorders, which health care providers use to assist with diagnosis. However, since the vast majority of health care providers are not yet familiar with ARFID, patients are often unable to get a clinical diagnosis.

Once I found the Facebook support group, I knew for certain that my physical inability to swallow certain foods, and the anxious feeling I have around them, are proof positive that what I’ve long thought of as a quirky relationship with food has an actual diagnosis. I don’t need a clinician, who likely knows less about ARFID than I do, to confirm that. Decades of being faced with foods I can’t physically eat even if I want to are all the confirmation I need.

People with ARFID refer to foods they can eat comfortably as “safe foods.” My list of safe foods is more extensive than many others who suffer with this eating disorder, but that doesn’t mean I don’t experience an anxious dread when faced with the prospect of having to swallow many conventional foods.

Every person with ARFID has their own individualized list of safe foods. As is common, but not universal, many of my safe foods are carbs, like pizza, pasta and white potatoes or calorie dense foods like nuts. That complicates efforts to maintain a healthy weight.

Other safe foods for me are idiosyncratic. For example, chicken breast is a safe food for me, but wings, legs or thighs are not. Yellow and orange peppers are safe, but not red. Dishes made with ground beef have a high chance of being safe, but steak or lamb chops are never safe foods for me. Most kinds of ice cream are not safe foods for me; only plain vanilla is always safe and only if it’s rock hard. Broccoli and onions are safe but mushrooms, asparagus, beets, tomatoes, olives and turnips all invoke the tightening of the throat.

If there’s a pattern to which foods are consistently safe for me, I’ve never been able to identify it. I can look at a food and know instantly, by the way my body reacts, whether or not it’s something I will be able to eat without gagging.

Over the past few decades, I’ve adapted to my quirky palate. I learned to cook and have introduced dozens of new foods into my repertoire of safe foods. But I’m still not a normal eater. And ARFID still interferes with my social life.

I’ve had significant relationships in which my limited palate has created tension, either because I’ve refused to try certain cuisines or specific foods or because I won’t eat at particular restaurants where there are no safe foods on the menu. When I do identify a safe food at a restaurant, I’ll usually order the same thing every time.

My husband, whose palate is as wide as mine is narrow, is remarkably accepting and accommodating. On our honeymoon 23 years ago, we stepped into a takeout restaurant with a U-shaped buffet. Dozens of dishes were displayed. I quickly scanned the entire buffet. Finding no safe foods there, I turned to my new husband and said, simply, “Nah.”

Today, we laughingly refer to foods that are unsafe for me as “nah foods.” I consider it a big blessing that my children do not suffer from ARFID, since living with it can be something of a buzzkill.

On our honeymoon 23 years ago, we stepped into a takeout restaurant with a U-shaped buffet. Dozens of dishes were displayed. I quickly scanned the entire buffet. Finding no safe foods there, I turned to my new husband and said, simply, ‘Nah.’

Close friends all know that I “eat weird.” Some friends make it a point to always have yellow peppers available whenever we’re invited over. Some will make dishes I’ve been known to eat in the past. If I feel close enough to someone, I will tell them specifically what they could make that I would be able to eat.

It’s still awkward with new friends and I’m not comfortable dwelling on it. I don’t mention ARFID. I usually just acknowledge that I eat weird or call myself a picky eater. Then I cross my fingers and hope they aren’t interested enough to ask any follow-up questions.

Being invited to a meal at someone’s home for the first time remains a challenge. I’ve been to dinner parties where people comment uncomfortably on what I’m eating (or not eating) and I’ve been to meals where the only safe foods for me were, quite literally, bread and water.

Even though it’s a lot more work, I generally prefer to host than to be a guest because it avoids the predictable, albeit uncomfortable dance that ensues if I tell the host in advance that I’m a picky eater.

Host: Just tell me what you don’t eat and I’ll work around that.
Me: The list of foods I don’t eat is quite long. I’ll just bring my own food. I don’t want you to go to any trouble.
Host: I want to make something you’ll enjoy. I don’t want you to have to bring your own food.
Me: (feeling squeamish and embarrassed) OK, here are the foods I do eat, but I really don’t want to cause you extra work. (I then proceed to share a limited and very specific list of safe foods, hoping that the host is not rolling their eyes and wishing they had never invited me in the first place).

Although I don’t know how or why this food phobia started for me, there are a few things I do know. ARFID goes way beyond ordinary picky eating. And the majority of people with ARFID don’t just outgrow it.

The support group has been genuinely helpful. I am now aware there are clinical hypnotherapy treatments reported to be highly successful with adults like me. The treatment is an investment. I haven’t tried it yet, but neither have I ruled it out.

Turns out, there might yet be sushi in my future.

Rivkah Lambert Adler is a freelance journalist, book reviewer and adult educator, specializing in Jewish and Israel content. She is the editor of “Ten From The Nations: Torah Awakening Among Non-Jews” and the creator of “100 Days of Thanking Hashem: A Jewish Gratitude Journal.” Raised in the U.S., she now lives in Israel.

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