ARFID rears its ugly head

I have eating disorders. Two, mainly. ARFID and Binge Eating Disorder [BED] (with occasional visits from the Anorexia and Bulimia fairies). It took me many, many years to acknowledge that I had an eating disorder at all. I thought I just ate too much. I thought it was because I was weak willed or addicted or some other thing. Now I know that the reason I eat too much consistently over time is because of my deeply disordered eating. I’ve posted before (see links above) about what the DSM V has to say about eating disorders. Spoiler: It’s very simplistic and reductionist and not exactly body positive.

In any case, I have been diagnosed with BED for five years or so, although it hasn’t been nearly that long since I accepted the diagnosis. Having BED means I dissociate when I am eating and eat far too much at individual sittings, to the point of becoming sick. It means I prefer calorie dense foods. It means I need to feel full to feel safe and comfortable.

But it turns out, it’s not the point. The first term I heard the term “ARFID” was about a year ago, when I met my current nutritionist, who is an ED specialist. She did my intake interview, and asked if I had ever heard of ARFID. No, I hadn’t. What was it? ARFID–avoidant/restrictive food intake disorder–is a food/eating anxiety disorder. Food makes me anxious and it is hard for me to deal with preparing or eating complex or highly variable foods. I avoid fruits, vegetables, fatty meats, anything that might spoil or be mushy. I’m hypersensitive to the texture and smell of my food. And if a food turns me off once, it can take me a very, very long time to try it again. Classic ARFID anecdote: I once tried, in a diet context, to eat a piece of pineapple in front of a group of friends. I bit down, got one hint of the texture of the stuff, gagged, spit it out, and choke/cough/gagged for about five minutes. Needless to say, breakfast was over.

I am finding ARFID much harder to fight than BED. I believe now that ARFID is the root disorder–at some point in my early childhood I became deeply anxious about food–and that BED is actually a coping mechanism to keep me from starving to death. When I am dissociated I can eat, which, honestly, is a relief after the way the ARFID makes me feel. I eat so much partially because I subconsciously know that my ARFID is going to keep me from eating again until I am famished and I need to “stock up.”

It is probably no surprise that in this most anxious of times, the ARFID is in control again. Over the past 3-4 weeks, there has been incident after incident of me panicking over food, refusing to eat until I am in pain from hunger, and being unable to feed myself or, sometimes, even move until I am hand-fed by my husband. I wept over a bloody egg. I panicked over a bag of vegetables and shoved it in the fridge still in the supermarket bag. I went to bed hungry (a lot of times).

My nutritionist says that many of her ED patients are experience an exacerbated tendency to restrictive food behaviors right now. It’s the anxiety. It’s so hard to care for oneself in general, and when you have an ED (or more than one) it is already harder. I don’t actually know what to do. I’m becoming dependent on my husband, who is learning to spot the signs that I’ve gone into an ARFID state. I ate twice today. I can remember only one day in the past two weeks when I had more than three eating episodes, and most days are either two, or two plus a middle-of-the-night panicked kitchen run by hubby. I’m regressing and I don’t know what to do, how to get out. The feeling of not eating, the knowing that I am not gaining weight even in enforced idleness and surrounded by a food-filled kitchen–it’s enticing. I don’t know how to beat it or even start fighting it.

I will say this, though–if I see one more meme about people getting fat right now and grazing too much, I am going to punch a wall.

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The New Normal

Finally, I feel like I am up to speed on a fairly good new routine. Here are some things I am doing:

• Being really careful about my morning routine, including showering, dressing, meditation, breakfast, and meds.
• Posting my outfit and makeup on Insta every day, as a way of making sure I really do get dressed and “presentable.”
• Doing some fitness every day. I now have a zoom HAES personal trainer, and we have appointments three times per week. I have also subscribed to Curvy Yoga Studio. If you are a user of that site and have favorite videos, let me know–I am still trying to figure out which one is best! We are also trying to get outside and walk our dogs in the evenings. That has only happened once so far.
• Being vigilant about journaling and trying to blog more regularly too.
• Working to organize my house 30m per day.
• Trying to keep a work routine. It is virtually impossible and probably unnecessary for me to work a full eight hour day most days right now, but I am trying to do work everyday. My work to-do list is so much shorter than usual, and has virtually nothing genuinely urgent on it, which makes it hard to focus.
• Doing some crafts every day, including making masks for my doctor relatives.

Here are some things I am not doing yet:

• Cleaning my house–my husband is being really great about straightening up, but the time will come soon when things need to be scrubbed and I genuinely don’t know how to do that. It will be fun. I’m nervous.
• Eating well. I’m trying to stabilize my eating and we are doing well at having discrete meals and sitting down to eat dinner more than usual, but my eating is still a mess. Lots of heavy comfort foods.
• Reading/Studying–this seems like a great time to read some of the large stack of serious books on my shelf and/or learn a new language or subject, but somehow I haven’t gotten that far.

I hope you all out there are finding things to do and figuring out ways to get out of bed and live a productive life. What are you doing to keep yourself moving–literally and figuratively?

Eating in Lockdown

Ok, I’m not really in “lockdown,” but we are under a “stay at home” order and I haven’t been out in days. And eating is hard. Or…too easy.

For most of my adult life I have not fed myself. I eat a lot of takeout, restaurant food, fast food, prepared foods…you get the idea. So now that I am stuck at home it is a big change for me. For the first time in years we have tons of food in our fridge and freezer and pantry. We have been cooking–not all the time, but every day or two. This would all seem like a positive change, and I hope it will be.

The issue is that I am eating too much. I know a lot of people who are saying that they are having trouble keeping out of the kitchen, that they are grazing all day, and are “going to get fat.” I don’t actually have that problem. In fact, left to my own devices, I apparently tend to ignore my bodily needs for hours on end.

Yesterday evening I ate dinner around 6pm. It was a large meal–hot dogs, cheese and crackers, ice cream sundae, poptarts–and I wasn’t hungry again before bed. At 1 am I woke up ravenous. This is a pattern I have. I eat a large early dinner and don’t eat in the evening. I wake up hungry in the middle of the night. And then I don’t get up and eat. I go back to sleep, even if it takes a lot of work to do so. When I wake up in the morning, I am rarely super hungry–it takes my stomach about an hour to “wake up.” So it ended up being 9:30 today before I ate again. 15 1/2 hour fast. I know, I know, it’s all trendy to do 16 hour fasts every day–but at least for me, this is not healthy. Because the result is another huge meal–this time a large-ish frozen quiche and a large slice of leftover birthday cake. And then digestive unhappiness, wasted time, and discomfort.

How to break this cycle? I’m supposed to be keeping food by my bed so that I can eat when I wake up hungry. I even have a mini portable fridge/cooler to use for this purpose. I just don’t want to use it. It’s a holdover from diet culture. Only losers eat at night. Evening eating and–gasp!–night eating are the marks of the devil. It is a sign of good “willpower” to make it until morning to eat. When you’re done for the day you’re done. I need to get over this but for whatever reason it is more firmly stuck in my brain than most diet culture adages. And I need to work on self-compassion on the subject–but self-compassion is one thing and my body’s physical distress reaction is something else.

ARFID

As I have written about before, I have binge eating disorder. I have been working hard on this, on staying in tune with my body so I don’t fully check out and eat more than I mean to, on letting myself not finish food that I have obtained, and on knowing that food will be there later if I leave it now. This is working. I haven’t had what I would describe as a true binge in a number of months. I am still partially checking out. I am not eating often enough and therefore eating too much in each eating episode. I am still eating highly dense and heavy foods which I don’t even want to be eating but which seem like a good idea at the time. However, my binge eating disorder is a much less serious complaint than it was six months ago.

I am losing weight. I am not weighing myself regularly, but I did weigh myself about two weeks ago and I found that I had lost about 15 or 20 pounds from where I was in late summer. This is to be expected as I am not bingeing nearly as much. The theory is, as one gets closer and closer to eating as one’s body truly wants, one’s body will naturally approach the weight that it wants to be at–an internal set point.

Problem is, I also have ARFID, Avoidant/Restrictive Food Intake Disorder, about which the DSM V says this:

• 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:
  • Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
  • Significant nutritional deficiency.
  • Dependence on enteral feeding or oral nutritional supplements.
  • Marked interference with psychosocial functioning.
• The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.
• The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
• The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.

ARFID means I am picky to the point of disruption in my nutritional health. In my case I am unwilling to eat virtually any fruit. My nutritionist says this is fairly normal for ARFID sufferers, as fruit is very delicate and unpredictable–sometimes it is amazing and other times gross, and you can’t always tell before you bite in. I have an unnatural level of anxiety about whether I will bite into a mealy apple or a soft blueberry, and so I don’t bite into fruit at all. Veggies are a bit better, but have similar issues.

My eating habits are extremely texture- and smell-driven and focus on high calorie density foods, because every eating episode is an anxious and stressful experience for me. So I eat as much as I can in each one so as to avoid eating for as long as possible; I eat the simplest, mildest foods possible because I want to minimize the stress of the eating episode itself.

It would seem that the binge eating disorder is actually a coping mechanism–to ensure that I get enough food, I overeat when I do eat. Now that the binges have eased off a bit, I am starting to get to the root of the matter, which is that I routinely (as in at least once a day) find myself avoiding eating, even though I am hungry and aware that I am hungry, because I am too stressed out by figuring out what I am willing to eat, how to get it, etc. Hence, weight loss.

Any sane person would probably be pretty sanguine about a superfat losing weight, but to me it is a mixed blessing. Yes, I have health effects from my weight. Yes, I have social and career impacts. But I have spent the past year learning to love myself as I am and to accept that dieting is a cruelty imposed on us by a sexist, racist, cishetnormative culture. So now I am not sure if I am allowed to feel happy about losing weight. Worse, I am afraid that feeling happy about losing weight will let loose the diet culture in me all over again.

My nutritionist in fact fears that I have anorexic tendencies as well, typified by not wanting to eat because of the joy of controlling myself and the sense of cleanliness and lightness that not eating brings. Diet culture and weight loss honoring are triggers for that.

I have no answers right now. I am working to figure out what I can and will eat that is a bit more nutritious than my usuals without becoming judge-y and diet-y. But it’s a hard road so far and I’ve taken maybe 8 inches of steps along it.

Feeling Full

I had what I would describe as a near-binge last night. I had a bad day at work. One of those days where you’re running around all over the place and yet somehow have gotten nothing done at the end of the day. It was 6:30pm, I was exhausted, grumpy, still not alone in my office, and very, very hungry. It had been a long time since lunch and I had been ignoring the signals for a while.

I ordered pizza. I ordered pizza in the way that a person preparing for a binge orders pizza. This is a big problem for me these days–I don’t know how to order/obtain food in moderate amounts, as I discussed in my post a couple of days ago. I ordered a large pizza with meat on it, chicken nuggets, and a chocolate chip cookie pizza too. It took forever to arrive, so by the time I was eating I was famished. At least I was finally alone in my office.

I started with the chicken nuggets. I ate all of them, telling myself that they would not keep well so I had to finish them. I was still hungry when I was eating them, but I didn’t need to eat them all. They didn’t even taste that great. That didn’t stop me.

Then I went to the pizza. I ate a slice. I was starting to feel full. I started on a second slice. I was losing steam. Somehow, though, I needed to finish that second slice. I stopped after that, but I still went for “dessert.” I ate two slices of cookie pizza. I sort of planned in my head to stop there but I didn’t. I ate two more. I stopped.

In sum, I didn’t eat as much as I might have a year ago. Half a pizza plus the nuggets plus most or all of the cookie thing would have been my norm. And I stopped before I was hopelessly sick. But it was still troubling, and caused by a sequence of things I am working to avoid, like getting starving, ignoring self-care during the work day, and getting so ragged that the only thing I have left in my toolbox for self-soothing is my eating disorder.

I spent another hour or so at work after that, resting and recovering from the day, calming down. When I finally went home, as I walked to my car, I had a weird experience. I was full, very full, and I didn’t like it.

I say “weird experience” because I like feeling full. I’ve always liked feeling full. It’s why bingeing is so calming for me. Full is satisfied, full is safe, full is calm. Several times recently, people in the ED recovery-BoPo realm have said to me that they “don’t like feeling full.” I was struck by that because I couldn’t imagine how that was. How could feeling full not be a state of rest and ease?

And yet, last night, as I finally made my way home, possibly for the first time ever (even including the many times I have made myself so sick that I have needed to purge or have actually been sick sick), I was conscious of not liking the feeling of fullness. And although I was too full, I wasn’t sick full, so it wasn’t that. I just didn’t like feeling full.

Stay tuned, I’m interested to see how this turns out.

Binge Eating Disorder

Warning: This post contains specific details of my experience of my eating disorder. Some parts of it could potentially be triggering to others with eating disorders.

The DSM V says:

Binge Eating Disorder: 307.51 (F50.8)

A. Recurrent episodes of binge eating. An episode of binge eating is characterized by both of the following:
    1. Eating, in a discrete period of time (e.g., within any 2-hour period), an amount of food that is definitely larger than what most people would eat in a similar period of time under similar circumstances.
     2. A sense of lack of control over eating during the episode (e.g., a feeling that one cannot stop eating or control what or how much one is eating).

B. The binge-eating episodes are associated with three (or more) of the following:
     1. Eating much more rapidly than normal.
     2. Eating until feeling uncomfortably full.
     3. Eating large amounts of food when not feeling physically hungry.
     4. Eating alone because of feeling embarrassed by how much one is eating.
     5. Feeling disgusted with oneself, depressed, or very guilty afterward.

C. Marked distress regarding binge eating is present.

D. The binge eating occurs, on average, at least once a week for 3 months.

E. The binge eating is not associated with the recurrent use of inappropriate compensatory behavior as in bulimia nervosa and does not occur exclusively during the course of bulimia nervosa or anorexia nervosa.

Specify if:

In partial remission: After full criteria for binge-eating disorder were previously met, binge eating occurs at an average frequency of less than on episode per week for a sustained period of time.

In full remission: After full criteria for binge-eating disorder were previously met, none of the criteria have been met for a sustained period of time.

Specify current severity: The minimum level of severity is based on the frequency of episodes of binge eating (see below). The level of severity may be increased to reflect other symptoms and the degree of functional disability.
Mild: 1-3 binge-eating episodes per week
Moderate: 4-7 binge-eating episodes per week
Severe: 8-13 binge-eating episodes per week
Extreme: 14 or more binge-eating episodes per week

https://www.psychiatry.org/psychiatrists/practice/dsm

Binge Eating Diagnosis

Binge Eating Disorder. They say I have this. I feel like I drifted around and through this diagnosis for many years, not having a clear idea of what was happening or that it could be thought of as an eating disorder. Providers would ask me if I binged, or purged, and I would say “No, I just eat too much.” They almost never asked a second question, so I got away with my ellipses.

My last two serious diet attempts were more medicalized than the previous ones. One was an inpatient weight loss clinic and one was an outpatient program through a local hospital. Providers at both of those programs were more persistent about questioning my bingeing. Honestly, I think they were trying to cover their butts–if I had a real “disorder,” then it couldn’t be their fault when their diets failed. They simply weren’t equipped to handle someone as ill as I. Both programs diverted me from their main weight loss groups into more binge-eating-oriented sessions.

Ironically. I believe that was the seed that finally got me free of the whole diet industry. Because even these diet industry programs had to admit that their stupid fasting and limiting and protein drinks–one of these was a diet so parsimonious that I became sodium deficient, something I had had no idea was even possible*–could be triggers for binges. So even they had to start letting me think through how often and how much I needed to eat to stay “under control.”

*The solution to sodium deficiency, apparently, is permission to eat 1-2 zero-calorie cups of bouillon per day. Not more. We don’t want to trigger water retention.

Some combination of them having to be honest about a few things, which actually got me some proto-information about this disorder, and the mere fact of the increasingly absurd bullshit I was being fed (instead of food), broke through. I started questioning whether it actually made sense to force myself, when already in pain from hunger, to postpone eating for at least 15 minutes by drawing in an adult coloring book.

The whole thing is still pretty amorphous. I don’t, so far as I am aware, have a written diagnosis by a doctor of binge eating disorder. I’m not aware of there being any particular prescribed or organized course of treatment. I’m not even sure, some days, that I have it. It’s not something that has worked its way into my “identity.”

In the book The Care and Feeding of Ravenously Hungry Girls, by Anissa Gray, there is a vivid description of the experience of a binge episode. It rings true to me, but doesn’t feel like me. I don’t feel like bingeing caused a blissed out or numbing feeling for me. I don’t feel like the compulsion to binge was ever consciously associated with particular emotions. It always really truly felt like just a rebound from the restriction and like a failure of control, like not being at the helm of my own ship.

Diagnostic Criteria

Some parts of the DSM V description feel very, very true for me. A2, B2-4. A2–a sense of lack of control in your eating–is the hallmark of how I have felt about eating for 42 years. No control, and, truly, no belief that I could ever be in control. Of course it turns out that the right way to not lose control is not to try to over-control things in the first place. Trite but true.

These days, by the way, a common occurrence in my half-recovered state is for me to get too hungry (more on that in another post), gather a huge pile of food, and begin to eat. A few minutes later, I will think something like “This is great, I’m really going to finish this, I am going to binge! I am never going to stop.” And then not long after, sometimes just a couple of bites after, full stop. Lots of food gets wasted and, unfortunately, food finds itself abandoned all over my house, office, and car. (Other aspects of my self care also need work, apparently.) But not only do I no longer feel out of control of my eating, I no longer even feel able to be out of control of my eating. I kind of miss that sometimes.

B2, B3–pretty well the definition of a binge. B4–this is huge. I’ve eaten secretly for years. Even my husband rarely saw my worst binges. I would wait until he went out to work or see his friends on my day off, and then order and eat an entire pizza or a huge pile of takeout chinese. One of the first hints, in retrospect, that I was starting to win free, was the willingness for him to know that I was eating these things and how much I was eating. Because the shame and the hiding is also the joy and the glory of having a secret, a special thing all your own.

B5 and C are a bit iffy–I didn’t really have consciousness of bingeing so much as categorically overeating, so it’s hard to recall feeling marked distress about the binges in particular. Plus I was hideously depressed the whole time, not just about eating. I felt disgusted with myself pretty much 24-7, so I don’t know where one disorder ended and the next began. I do recall marked distress over the occasional periods when I would also purge. I had strong awareness of the health risks of excessive vomiting and wished I could resist purging, although at the same time that was mixed with pride that I had “cleared my system” of the results of the binge. And a relief of the physical pain of overfullness, of course.

D–I never tracked my binges carefully, or even my eating in general, until things were already starting to get better, so this is hard to say.

But Wait, Really?

But what I really want to talk about is the rest of the description. A1 and E in particular.

It frustrates me that in A1 this disorder is characterized in opposition to, or comparison with, “normal” eating. I’m pretty goddamned sure that even when I don’t binge I eat more than “normal.” I know this because first, I’ve had my resting metabolism tested (by one of those “medical” diet facilities) and it’s quite high, so if I ate a “normal” diet of 2000 calories a day, I would be rapidly shrinking. Second, I’ve watched normal people eat. They don’t eat shit. I’ve seen them, in all seriousness, be defeated by a tiny container of Teddy Grahams after their lunch, and I’m not talking about dieters. In fact, whenever I have lunch with my coworkers in a group, I always end up undereating because I am unconsciously keeping pace with them. Then I’m ravenous two hours later. (Probably also a good topic for a future post.)

This kind of vague, moralization-tinged definition of the disordered eating process is, in my opinion, symptomatic of the bullshit fatphobia with which the medical profession is rife. And I bet it makes it hard to diagnose fat people properly, because where does eating an appropriate amount to nourish your larger body end and disordered eating begin? If you only had the DSM V to go off of, I think you would have a lot of trouble answering that question.

Warning: The next bit is the part I am most concerned could be triggering, particularly for those in recovery from a restrictive eating disorder. Proceed with caution.

Worst of all badness, though, is E. Reminder:

The binge eating is not associated with the recurrent use of inappropriate compensatory behavior as in bulimia nervosa and does not occur exclusively during the course of bulimia nervosa or anorexia nervosa.

You know what this sounds like to me? It sounds a hell of a lot like binge eating disorder is what you have if you aren’t cool enough to qualify for anorexia or bulimia. You aren’t clever enough to realize that you are supposed to engage in “compensatory” behavior to balance your bingeing. Yeah, they covered their asses with the word “inappropriate,” but “compensatory” is pretty strong. You also haven’t quite managed to qualify for a restrictive eating disorder–which is always checked for first–so congrats, you get the consolation diagnosis.

Admittedly, I’m sure some of that is me reading things into it, because that’s what I’ve always believed. Do you know how many times I have prayed–literally prayed–to get anorexia instead? If I were going to be sick with an E.D., the reasoning went, then couldn’t I at least lose some weight while I was at it? Why, oh why, did I have to have an imbalance in the direction of bingeing over purging? I’ve actually tried, on multiple occasions, to “flip the switch”–trick my brain into addicting to the feeling of emptiness instead of the feeling of fullness–as a weight-loss technique. Go American social pressures! Go!

So thanks a fucking lot, Mr. DSM V (and I feel confident you are a Mr., although I realize I shouldn’t project that genderization onto you without your permission) for making me feel, even in the moment of my diagnosis, like a failure with the wrong, less cool disease. That was really a value added to the whole journey.

Remission

Raise your hand if you had any idea that eating disorders, like cancers, could go into remission. Anyone? Anyone?

By the definition in this manual, I am now in full remission. I haven’t had a real binge in months. Some of the emotional distress still happens, and I still have bad eating habits and eat too much too infrequently, but I no longer lose control or awareness of my eating. I no longer finish entire containers of food in one sitting. I no longer hide my eating.

Do I feel like I am in remission? I do not. I actually find this possibility terrifying because if I am getting better than why can I still not feed myself successfully? I can barely get through a single day without a food-choice-related disaster and I have regular panic attacks about how to nourish myself. I can’t handle the grocery store and even Instacart is often a big fail. Our oven has been broken for 16 months and it only impinges on my consciousness once every couple of weeks, because I don’t cook.

Also, why am I not losing weight? — argh, so much work still to be done on the body liberation/ fat acceptance side of the aisle!!!!

And finally, what the fuck do I do with my Saturdays now?

Food Sharing in Binge Eating Disorder Recovery

Do y’all live alone? If not, do you have your own separate food or do you share? I live with my husband and no other humans. (We do not have children.) We mostly have very distinct eating habits so we rarely share food, but sometimes we do. More often, we think we’re not sharing until one of us discovers that the other has finished something they were counting on eating soon.

I’m very bad about food ownership. I really don’t like people to touch my food. I really like to know that there will be exactly as much of whatever tomorrow as I left today.

Yesterday, as we were driving home, I was eating a bag of Doritos. I was eating them quite slowly and it was quite a large bag. Cool as you please, without warning or query, my husband leaned over and took one and ate it.

Instantly I suffered a massive surge of rage and anxiety. Mine! How dare you!?

Almost as quickly, I realized that this possessiveness was a food anxiety/scarcity response. I needed to know that those Doritos were there for me. I was working hard not to chug the whole bag down in a rush, but I needed to know that that wouldn’t lead to them going away.

I also realized that I could pull over and buy more Doritos anytime I liked and then eat them. This calmed me down a lot. I moved on and even offered my husband the rest of the bag when I had eaten what I wanted at that time.

The incident made me think, though: is it possible to share food while in recovery from my ED? I don’t think it is. I think it vastly increases the chance of a binge resulting from needing to know that the food won’t disappear and be lost to me. I think it makes me feel a loss of empowerment and I think it diminishes my very limited baby steps towards caring for myself by having the right foods available for myself at any given time.

I feel guilty about this. After all, my societally approved gender role involves not only sharing food, but actively providing food to my mate. Food should not be mine. Food should be something I give to the world, not the other way around. So buying, keeping, and not sharing food like an angry squirrel feels very wrong.

I hope that someday my food anxiety and scarcity-tinged panic will subside, but until then I guess I’m going to start putting post-it notes on my stuff in the fridge.