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05 July 2008 @ 12:45 am
in which a. ponders the mechanics of recovery  
OK, so I was having a conversation with bodyperestroika and we were basically discussing the faults of the current system of eating disorder treatment right now. One of the major points is that ED-NOS and bulimia nervosa are seen as 'lesser' diseases than anorexia nervosa, which can lead to discrimination in health care and even, as I have myself seen, eating-disordered girls and women waiting to ask for help until they become underweight

This post is directed mostly towards those with maladaptive starvation disorders (i.e. anorexia nervosa and variants, restrictive bulimia nervosa, starvation-based ED-NOS and variants) just because it's what I'm experiencing and thinking about right now - so those suffering from BED, COE and other variants of ED-NOS: I know you're out there. I know you suffer just as much as I do. It's going to be OK.

Here's some other points to our conversation...
There are many points to this. First of all, the current treatment system is fundamentally flawed: it approaches people with eating disorders as people who need to be 'fixed' and made 'normal' again.

Considering that most of us were never 'normal' - because of personal chemistry, family dynamics and other stuff - this is essentially not going to succeed in the long-term. Once you have been eating-disordered, you can never, ever go back to being 'normal' and, in some cases, some of us even developed eating disorders because someone was trying to mold us into a shape we couldn't be.

There's a second point to that assumption, and that is this: it fundamentally denies that you are an individual. Yeah, yeah, I know, I'm no special little snowflake. But the fact is that people with eating disorders live in a world of secrecy and shame; being told that, essentially, everything we have been doing is wrong, crazy, irrational, so on and so forth - that will not help. Any decent treatment plan is going to be comprised mostly or only of safe foods (I'll get to that later) as according to the person who it is meant to help, as well as respecting a multitude of other personal preferences and helping them to make plans for the long-term without falling into self-destructive behaviors.

So that's the first, basic fact about our current treatment system. It's wrong. The vast majority of us cannot be made into someone that is 'normal'. Once you have an eating disorder, you can never learn to ignore food the way this treatment system encourages us to. Ultimately, we have to go beyond seeing food as 'just food'; we have to work with the foods that we see as being healthy, good and nourishing to us.

That brings me to a point here. We will never be able to dissociate all these emotions we have with food. Never. We can change them, but at its basis, food is love to us. If we don't feel loved enough, we'll binge. If we feel unworthy of love, we'll starve. That's a pretty big generalization, but I find it works for the majority of those suffering from eating disorders. Anyway, yes, we can change those associations. Ask yourself: are you going to go through the time and pain it takes to do that when you're already suffering from an eating disorder, or are you going to do it when you feel stable instead of vulnerable? Gee, hard question, right? Pfft.

There are more problems with the current treatment system, and one of them is that very few of the people doing the treating have any idea what it's like to have an eating disorder. I come to this conclusion because (I have not been hospitalized for my ED before; however, I have been hospitalized for two suicide attempts, so I personally know some of which I speak), from talking to many people who have been inpatient, there is a surprising lack of open compassion from the specialists. Their attitude could best be described as 'tough-love', and this is a horrible approach for a number of reasons.

First, people who starve (again using generalizations) do not feel worthy of love or compassion. By being brusque - and yes, it is hard to go long without getting burned out, since many professionals don't realize that it's because of the treatment system itself that leads to such high rates of relapse - you confirm to us that our beliefs are true: we are not worthy of love or care. Thing is, when you have an eating disorder, everything that hurts you is warped in your head to mean that you deserve to be hurt. OK, yes, don't treat us like children. Yeah, I know. But don't treat us like we're delusional little invalids who don't know up from down. We know starving ourselves is bad for us. It fucking hurts. Thing is, you can be a friend to us, at least temporarily, without breaking professional standards or coddling us. It's possible. Remember that people with eating disorders are a gigantic raw nerve, and that if you brush us with bristles because you want us to hurry up and be normal or whatever, we're not going to oblige, we're just going to sit there and hurt and wish we could starve. We are sick. We need your compassion, not your contempt. And maybe you don't feel contempt for us, but it sure as hell feels that way sometimes.

That brings me to my next point: we aren't fucking insane, either. We may not be able to admit we have a problem, but the simple fact is that we know we hurt and the vast majority of us know that starving just makes us hurt worse. The problem comes with this: when you try to make us eat like 'normal people' - which we are not - or when we try to make ourselves eat like 'normal people' - we encounter amazing, incredible amounts of wild-eyed anxiety. This is partially because, you know, people with eating disorders stop producing all the neurotransmitters they need for certain emotions so that their body can run the basics. No, I don't have any studies for that, it's just common sense: your body shuts down non-survival processes to run the basics, and eventually you get to a point where you can't feel much at all but fear and pain and self-hatred. You know, if you're a professional, that people with eating disorders display remarkably similar emotional patterns, and that those emotional patterns are remarkably limited. The mind is the body is the mind is the body. Put two and two together, already.

Now, another problem is this, which I mentioned before: we can't see food just as food. Are you fucking crazy? That's not a cheese pizza, it's a fucking lump of fat that's trying to kill me through adhering to my thighs! (If you can't laugh at yourself, who can you laugh at?) We are eating disordered and let's face it, our entire culture has strong symptoms of disordered eating. There's no way you can starve your body, even a little, and truly be normal. Fact: people do not naturally hate their bodies, it's always social conditioning. You need to face the fact that we live in a lipophobic culture, and also the fact that in a culture where our perceptions of fat = stupid, unworthy, lazy, ugly and evil, there are going to be people who develop eating disorders, and even more of them in times to come are going to develop them through a nonchalant diet. Community members, feel free to add in how you developed your eating disorder.

In order to drastically begin refeeding someone's body so that they don't relapse very soon after they are discharged, you need to let them gain weight slowly. I understand that one of the hugest reasons for the rapid weight gain while at inpatient is because it's so expensive and insurance won't cover it for long, if at all. However, I'm pretty convinced that one of the reasons for certain supposed side-effects of refeeding our bodies - such as heart palpitations - is actually the rapid weight gain. Look at people who do yo-yo dieting and you'll see many of the same symptoms. Rapid gain is not a safeguard, it's a health hazard. Especially since rapid weight gain will make us flip our shit and begin planning our restriction as soon as we get the fuck out of there! Believe me, we know how to fool you into thinking that we're getting better. We're really fucking good at hiding our disorders and you are not an exception to this rule; the only reason you can't see it is because you're making us eat.

Honestly, though, rapid weight gain freaks us out and is a supremely bad idea as such. It also precipitates rapid weight loss. lgmas, a member of this community, has lost over ten pounds in the week and a half that she's been out of inpatient. I'm not fucking kidding. It makes us flip our shit and by the time we get out, we are so done with this bullshit 'recovery'.

Another painful reality is that we can't just go around eating nightmare foods all the time! They may not be nightmares to other people, but they are to us, and we're the ones you're treating, not them. We need to have more than meal options, we need a personalized meal plan. And honestly, that would cost a lot of money to get all those ingredients, except for this one simple fact: if you try to get us to eat foods we fear, we're likely going to relapse. We need to be fed safe foods. Guess what are almost always and without exception safe foods? Fresh fruits and vegetables.

You need to face the fact that the vast majority of us cannot slash the ideas of 'good' and 'bad' foods from some of our culinary vocabulary, much less all of it at once. So here's where I get to the point when I start offering real, constructive suggestions on what to do.

You need to radically change your idea of what is 'normal', because so has our cultural idea of such a thing. We don't want normal. Normal scares the shit out of us. We want SAFE. And fruits and vegetables are always, always safe. (Except for avocados sometimes.) So are raw nuts, in limited quantities; this just means we'd need to eat, oh, five to ten walnuts at different times in the day. K so, there's a nice fat intake where we won't have panic attacks. The rest of the day? Fruits and vegetables - and if they won' take food, give them juice, fresh juice. Keep a juicer everywhere. It's also good for hypoglycemia!

Seriously though, raw fresh fruits and vegetables. They are extremely high in nutrients - in fact, I would charge that raw fruits and vegetables are the most nutritious foods on the entire friggin' planet! This is excellent news. This means that, essentially, not only can you refeed your patients with their safe foods, these safe foods are so full of nutrients that they will actually boost the refeeding's success. More nutrient-rich foods, better results, just because then your patients' brains can restock more quickly on their depleted synthesized and diet-obtained chemicals. Period.

You may be worried that these foods can't supply enough calories. You're wrong. Many athletes who eat primarily if not only raw fruits and vegetables can easily obtain 4,000+ calories each day from fruits and vegetables. You see, most of the studies that have been done on 'raw foods' were actually done on vegetable-predominant diets, and it is literally impossible to eat enough vegetables (green, at least) to get enough calories to fuel your body. However, fruits are awesome and more calorie-dense than vegetables while still remaining safe and nutritious. Also, fruits have anywhere from 2-16% protein content; greens can have up to 50%. As a very basic number, you can go for 10%. Recall that the US guidelines are for up to 15% protein, not exactly or at least. :)

Oh, and money for all these fruits and vegetables? Simple. You won't need people to cook them and arrange them on little plates. I say that snacking should be available throughout the day, though. And juice. Yum.

As a last note, post-inpatient care is notoriously skimpy. I suggest you sit down with your patients and make a meal plan with them, especially since shopping for fresh fruits and vegetables in large quantities isn't exactly taught in this world. It can easily be done on $30 a week, though, and yes that is 2,000 calories a day and no it's not all bananas. (Haha, I like bananas though...)

This is not working. Retry, Abort, Cancel, Switch Program?

If you don't want to listen to me, fine. You can see how badly this is working. Relapse rates are pretty goddamn high. Aren't you willing to try something that has all this logic behind it? It works. I know it works, it worked for me until I ran out of food. This works.

This is how you refeed someone without knocking them over with shock.

I think that's my spiel, but I may add later if I feel I need to.

*heaves a huge sigh*
altered_rosealtered_rose on July 5th, 2008 05:38 am (UTC)
Well seeing as I have a very acute milk allergy that cheese pizza could be trying to kill me. 0_O Lol sorry bad joke. One of my biggest turning points in my relapse was when everyone in what I considered my support network tried to make me "normal". I'm a gender variant street kid that's been forced in to the suburbs, my idea of normal isn't the same as theirs, and one of the biggest things in my eating disorder was that I was gender variant and everyone seemed to hate me for that (because obviously they can't be bigots that are afraid of seeing things outside of male-female binary, it has to be my fault for not being obvious enough).

I've also been hospitalized for two months when I was 12 due to my self-injury/suicide attempt, and I gotta tell you, I will never go back there. I no longer go to the hospital even when I need to, because no matter how small the problem they'll pull up my medical record and see I was held for "self-injurious behaviors and severe suicidal ideation" and I "exhibited unwillingness to eat, emotional distress, psychosis, and aggression towards hospital staff" and they'll try to put me back in there. Though they never mentioned that the staff was so horrendous that my aggression and unwillingness to eat was because I would have rather died than stay around people who told me to "[cut] deeper next time so you're not as stressed next time we have to stitch you up". The whole damn mental institution is more fucked up than us, at least we admit to needing help, and being not-so-normal. Good article by the way.
busysecretsbusysecrets on July 5th, 2008 12:17 pm (UTC)
And you know, there's another reason both of us would be remarkably unwilling to go in - our ethical veganism. The fact that we have eating disorders does not change the fact that we have a personal moral code in which it's not OK to exploit animals. This goes back to the 'we aren't delusional invalids' thing, really, but it's fucking nuts how it doesn't seem that most of these treatment centers 'allow' you to be vegan.

And yeah. Hospital staff need to learn to shut up, listen, and not be judgmental.
altered_rosealtered_rose on July 5th, 2008 09:51 pm (UTC)
Yeah see, they actually fed me eggs there without my knowing, and we both know I'm allergic to eggs, so I was sick after that and they would complain about my sickness being "all in my head". They were nice enough not to force me to eat meat, and because of my milk and egg allergy they had a specialized vegan diet made for me, but they wouldn't check ingredients in the food since my vegan brother was the one who told them I couldn't eat that type of food, and we all know it had to be his fault I couldn't eat these foods, since it wasn't like I had actual doctors saying eggs and milk were harmful to my health...actually wait I did.

The sad thing is that I talked to a lot of boys and girls who had been in inpatient or hospitals and this is common, the exception are friendly and caring.
bodyperestroikabodyperestroika on July 5th, 2008 05:45 am (UTC)
You, my friend, are TEH AWESOMEST. :) Seriously. Go off into the world and help us all recover. :P
busysecretsbusysecrets on July 5th, 2008 12:18 pm (UTC)
Haha, I wish!
primaviolprimaviol on July 5th, 2008 12:07 pm (UTC)
so it seems all the advertisements at the bottom of the page are for ED treatment centers. haha...if they only knew what we REALLY think about their shady treatment devices.
busysecretsbusysecrets on July 5th, 2008 12:18 pm (UTC)
Haha, yeah. Unfortunately, I don't think that they're really trying to fuck us up, I just think that they don't have any clue. Let's face it, even if any of us recover, most of us won't be working in an ED treatment center, we'd be triggered to all hell and relapse. :\
lgmaslgmas on July 5th, 2008 01:28 pm (UTC)
I agree with everything you've said...
I wish we could all recover, and run around in bikini's and be happy... ha ha ha
Any of us happy, genuinely happy in a bikini, now that would be something wouldn't it
busysecretsbusysecrets on July 5th, 2008 01:32 pm (UTC)
You know, it might just happen someday.
the_virus_dollthe_virus_doll on July 5th, 2008 05:24 pm (UTC)
I have to agree with everything here. And regarding the food, it reminded me of a situation I had in inpatient treatment. I'm a vegetarian, and have been for a very long time, because I love animals too much to eat them. It came for dinner and what was for dinner? Steak. I absolutely refused to eat it on the basis that I am a vegetarian, and the nurse had a fit because I wouldn't eating it, saying that my vegetarianism was complete bullshit and it was all from the eating disorder. Uh... no. And then I got written up for "not cooperating with the nurses at meal time" and had to talk to the therapist for an hour just because of the stupid meal.

Another problem I've always had was either the admittance into an inpatient program (the program was very "exclusive" and wouldn't admit me because I wasn't like, dead) or my insurance wouldn't cover more than three days. And inpatient treatment is hella expensive. But my insurance company said that Anorexia isn't that serious and generally disappears on it's own. What the hell. I blame the growing number of wannarexics.
busysecretsbusysecrets on July 5th, 2008 06:04 pm (UTC)
Anorexia isn't that serious and generally disappears on it's own.

OK, I'm sorry, but that is the funniest thing I've ever heard. Fuckin' insurance companies, they're to blame for a lot of this as well. Socialized medicine FTW!

Those are very good points. The requirement for being underweight requires a patient to continue struggling on their own... until they're underweight. And as we all know, the longer an eating disorder is left untreated, the harder its hold is to break. Yeah, gee, leaving it until you're underweight, that's smart.

Man... I'm sorry about the steak thing. But go you for sticking to your guns.
the_virus_dollthe_virus_doll on July 5th, 2008 06:31 pm (UTC)
The funny thing is, at that specific time that I was trying to get treatment, my BMI was 15.6 but they said that they would only treat girls with a lower BMI than mine. It was pretty retarded.
busysecretsbusysecrets on July 5th, 2008 06:48 pm (UTC)
Wow, that is fucked. Holy shit.
Rachael Shortrachaelshort26 on January 1st, 2012 07:32 am (UTC)
This should be printed, framed and on the wall in every hospital
This is the best article regarding eating disorders I've ever read (and since realizing that I had one I've read a lot). I can identify with every point you brought up and half of it is stuff that I've screamed at my doctor whilst crying. It's comforting to see it posted here, to know that I'm not the only one and I'm not insane. I've already taped it to my wall :)