Food Is Hard

For my whole life, I’ve struggled with ARFID (Avoidant/Restrictive Food Intake Disorder¹). ARFID is a relatively new diagnosis in the DSM-5. From the outside, it looks like “picky eating,” but this isn’t quite accurate and carries a lot of negative connotation so many people with ARFID are offended by the term.

If I sent you this post, I probably want you to read How to accommodate me and FAQ.

This post expresses my experience and preferences. Descriptions of others' experiences may not be entirely accurate.

What is ARFID? #

As of the DSM-5, ARFID is currently something of a catch-all for eating disorders not related to body image. There are 5 main types of ARFID, which I think are better described as 3 kinds of causes and 2 kinds of compounding factors.

Common symptoms #

• Aversion to eating
• Limited set of tolerable “safe foods”
• Not eating enough to remain healthy
• Interference with social functioning

Causes #

• Sensory relating to properties of the food (Avoidant ARFID)
• Fear of physiological results (Aversive ARFID)
• Disinterest in eating, such as lack of appetite (Restrictive ARFID)

My experience (and the experience of everyone I’ve talked with about this) is mostly sensory, so that’s what the rest of this post will be about. Keep in mind that there are forms of ARFID not covered here, and the treatment for those is likely to be different.

Compounding factors #

• ARFID “plus” — ARFID can co-occur with other eating disorders, such as anorexia nervosa. I’m not qualified to say any more about this.
• Adult ARFID — Historically, ARFID-like diagnoses were only recognized in small children. Some children will simply “grow out of it” but often untreated ARFID persists into adulthood. Personally I find it easier to treat ARFID as an adult than as a child, for reasons I describe in What to do if you relate.

My experience #

This short comic is one of the best depictions of ARFID that I’ve seen, and if you read nothing else about ARFID then read that comic to understand what it’s like.

I have a diagnosed Sensory Processing Disorder and diagnosed ARFID. I also suspect autism, but I don’t have a diagnosis².

Sound #

(This is not part of ARFID.)

I’ve always been sensitive to loud sounds, especially when I’m tired or hungry, so sometimes I have to leave social gatherings if there’s too much going on. This is very common among autistic people, and is why there’s a stereotype of them wearing headphones a lot: because it just makes the world a little less overwhelming.

Smell/taste #

If you’re neurotypical then probably there’s some foods you really like, some that you’re willing to eat but aren’t a big fan of, and some foods you can’t tolerate even a single bite of, with a whole lot in between. For me, that whole scale is shifted: almost all foods taste awful, there’s several that I’m willing eat, and there’s very few that I actively enjoy. Since almost every new food I try is unpleasant, I have anxiety around trying new foods.

This has lots of knock-on effects:

• Nutritional deficiency, which thankfully is not too bad for me
• Social isolation, because food is something people congregate around and discuss)
• Difficulty with travel, because it’s hard to find food I can eat
• Irritability when hungry

How to accommodate me #

ARFID is not widely known, so it’s understandable to make mistakes. Here’s a quick guide to how I’d prefer you behave around me with respect to food. Other folks may have other preferences, but these are probably a good starting point.

Do #

• Make plans that work for the group. It’s hard to find restaurants where I can eat, and it’s ok to make plans that don’t work for me.
• Communicate meal plans at least a few hours ahead of time, and check in with me about my plans. Maybe the group plans work for me, or maybe I’ll get food on my own. Either way, this is a great way to show you care!
• Check in with me before making or acquiring food for me (other than routine groceries). Even within my list of safe foods, different ones will be appetizing at different times. Perhaps there’s a food that I enjoy today, but after some months my preferences may change and it becomes intolerable.
• Ask me what foods I like, for planning purposes. If you’re picking a place to eat and or planning a party and want to make sure there’s something there for me, thank you! This is a good reason to ask what foods I like, and I’ll specifically tell you about foods I eat that are filling enough for a meal and likely to be found in restaurants.
• Have conversations about things other than food, sometimes. It’s ok to talk about food around me, but be mindful that I probably can’t participate and might feel socially isolated if the conversation goes on a while, especially if everyone else is eating and I’m not.
• Tell me about promising food options that I’m not aware of, but don’t push. In a large table of food I don’t like, my eyes may glaze over and miss the plain bread that I could munch on. In a busy food court, I may spend a long time wandering around trying to find the pizza place.
• If you offer me food, let me know that you won’t be offended if I don’t want to try it or don’t enjoy it. (Of course, only say this if it’s true!) This lessens the social pressure, so I only have the sensory risk to contend with.

Don’t #

• Don’t quiz me on what foods I do/don’t eat. My struggles with food should not used for entertainment. (“Oh my gosh, you’ve never eaten X? No way!”)
• Don’t ask me about food as a casual conversation starter. This is sometimes ok, but better to just avoid. I don’t know much about food, and even if you don’t make a big deal out of it it’s still a little uncomfortable.
• Don’t ask me if I’ve made progress with food exploration. Progress is slow and sometimes negative, so I don’t like to talk about it except with people very close to me. If I have something I want you to know, I’ll let you know.
• Don’t try to explain how something tastes, unless I ask. See If you don’t know about food, why not ask? I’ll gladly teach you!
• Don’t guilt me for skipping a group meal. I won’t be offended if you make food plans that don’t work for me, but I may skip it if I think it will be unpleasant. If my presence is important to you, you should make an effort to accommodate me.
• Don’t pressure me to eat anything in particular. There’s many reasons I might decline food. Perhaps I’ve tried something similar before and didn’t like it, perhaps I’m not in an environment conducive to trying new foods, perhaps I’m genuinely not hungry, or perhaps I need some time to see how I feel and evaluate the risk of sensory discomfort vs. the reward of being less hungry.
• Don’t suggest new foods that I should try. You probably don’t know enough about my experience to provide useful information, even after reading this whole post.
• Don’t watch me while I try a new food. You can stay in the room though. Just don’t make a big deal out of it.
• Don’t put me in situations where I am socially obligated to eat or enjoy a food. In particular, offering me food when I visit your home is very kind but puts me in a really awkward situation. Even if you are an excellent chef, I probably will not enjoy the food you offer me simply because I don’t enjoy most food. Trying new foods (or new variations on existing foods) is stressful, especially when I think it might hurt someone’s feelings or self-esteem.
• Don’t be offended if I don’t like your cooking. It’s not a reflection of your culinary skill. My opinion of your food is irrelevant unless you have made it for specifically me.

How to support me #

If you’re close to me and want to support me then you probably already know this, but maybe this will be useful for other folks close to those with ARFID. This section only applies for very close family & friends, who know what my safe foods are and have seen a lot of my day-to-day interaction with food.

• Ensure I eat something. I can’t always eat a full meal, but even eating a snack is beneficial. I have a list in my journal of meals and snacks I like along with how long they take to prepare, and there’s almost always something on that list that sounds appealing.
• Let me waste food. If wasting food is not socially acceptable, then that provides an additional barrier to preparing food when I’m not sure I’ll eat all of it. Food waste is a problem in the world, but my personal impact on it is irrelevant compared to my mental and physical health.
• Let me try a bite of your food, if I’m curious. I will ask if I’m interested. Usually I will want a microscopic portion, and I might or might not tell you what I think of it. My goal is usually just to gain a single sample point in the high-dimensional³ space of food experience, regardless of whether it’s something I’ll eat in the future.
• Occasionally suggest foods I could try. Especially if I’ve told you about some of my recent successful and unsuccessful food exploration, you might have good advice!
• Don’t push me to try new foods. Doing so repeatedly will degrade our relationship. There is exactly one person who is responsible for pushing me to try new foods, and that is my ARFID specialist.

What to do if you relate #

I’ve found ARFID to be shockingly common for how little-known it is, especially in neurodivergent communities. After describing my experiences in one group, no fewer than seven of the most active 30 or so members said they related, and most of them had never heard of ARFID.

Here’s some general tips I have for anyone with ARFID.

• Find others that relate. /r/ARFID is a good starting place if and only if you are able to interact with Reddit in a healthy way.
• Take control of your food. I found it much easier to try new foods when I moved out of my parents’ house and started buying my own groceries.
• Find ARFID treatment. Look for practices that specifically mention ARFID on their website.
• Realize that unfamiliar tastes/textures are not necessarily bad. They often are, but to maximize the chance of success you have to let go of the expectation that they’ll be bad.

FAQ #

What foods do you eat? #

This varies over time, but as of the end of 2024 my safest foods are cheese pizza and plain pasta. Plain bread and tortilla chips are often good snack foods. I also enjoy chocolate-chip cookies, but only certain brands.

There’s a few other foods I eat but they change more frequently and I’m not currently comfortable eating them unless I make them at home, so they’re probably not relevant for you to know.

Do you like X? #

If we take this question at face value, then my answer is usually “I don’t know. I haven’t tried it.”

But every single time someone has asked me whether I “like” some food, what they really want to know is whether I’m willing to eat it. In that case, the answer is almost always “no.” And if I do answer with “I haven’t tried it” then very often I’m asked why I don’t want to try it, putting me on the defensive and requiring me to justify my aversion to trying new foods. That’s why if you ask me whether I like some food, I’ll probably answer “no.”

A better phrasing is “Do you eat X?” (or, even more directly, “If X is present at Y social gathering, will that work for you?”). This sidesteps the question of food preferences (which I experience very differently from most people) and instead asks about practicalities.

How do you know you don’t like it if you haven’t tried it? #

• by looking at it to make texture predictions
• smelling it to make taste predictions
• poking at it with a fork to ascertain the flexibility and chewiness
• considering its similarities to other foods I’ve disliked
• considering its differences from other foods I’ve liked
• knowing that there is an ingredient in it that I hate
• trying to chop it with a knife and feeling the gristliness and hearing that telltale horrible creaking noise of gristle and noping right out of that situation
• this is how humans naturally decided whether or not to eat unfamiliar foods in the wild thousands of years ago
• our senses interact with each other to protect us, so your nose alerts you to an incoming bad taste before you put it in your mouth so you don’t end up eating the bad thing and dying
• this is how we survived as a species
• it is perfectly rational
• it makes perfect sense
• so stop

— jayranwritesthings

More generally, I dislike most new foods I try. So when presented with an unknown food, I probably won’t like it.

If you were stranded on a desert island, wouldn’t you eat whatever you could? #

This question is very understandable to wonder. I’ve thought about it a lot myself.

The answer is: I don’t know, and I hope I never do. Many, many times in my life when I had no access to safe food I’ve chosen to not eat anything, even knowing full well the damage that does to my emotions and physiology. Perhaps I could suffer for the sake of survival, and perhaps I could grow accustomed to whatever food I found, but it’s also quite possible that I would starve to death⁴.

Asking this sort of question to someone with a psychological disorder is generally invalidating because the implication is that “surely you could overcome your disorder if you were sufficiently motivated, so you’re choosing to be difficult.” In the case of chosen preferences (such as veganism), it’s almost always asked in bad faith: whether a vegan would eat meat to survive is irrelevant, because their decision is made in the context of the current world we live in.

In our current culture, restricted eating always makes social life more difficult and very often brings judgement from others, so there’s no external incentive to “fake” it. If your reaction to someone’s eating preferences is to think “they’re just doing that to be difficult,” you’re wrong and you need to reflect on two things:

• Is it possible for other people’s minds to work significantly differently from your own?
• Is it possible for other people to struggle in ways invisible to you that you have never struggled with? Think about ways you’ve struggled that others haven’t seen; even if you overcame these on your own, can you imagine struggles challenging enough (or compounding enough) that they are impossible to overcome alone?

If you don’t know about food, why not ask? I’ll gladly teach you! #

Smell and taste are very high-dimensional³ spaces, so the easiest way to explain things is by analogy. “X kinda tastes like if you had Y and Z together, but with more W.” This doesn’t help me, because if I haven’t tasted X I’ve probably never tasted Y or Z either. More fundamentally, I haven’t eaten enough foods to even have a map of the taste space, so even descriptions in terms of fundamental tastes aren’t helpful to me. Furthermore, my subjective experience of food is so different that even if you could communicate it in a way I understand, it’s quite possible that my experience with the same food would be very different. Unless you’re talking about something very closely related to something I eat, I will have no way to understand most of what you could tell me about food.

I wish we could swap places for a week so I could lose some weight! #

No, you don’t. ARFID is not just the “I eat less” condition, it’s the “food is hell” condition. Don’t trivialize mental health struggles you don’t understand.