A memoir writer and first-hand sufferer comments on her experiences with “eating disoders treatment” over several decades

I have been dealing with a serious eating disorder since 1980.  It’s a miracle I’m still alive.  What science knows about it is shockingly little compared to what in fact those of us who actually have ED know.
  I was in the mental health system 30 years begging for help with my ED and never got it.  In 1981 and throughout the 1980s and most of the 1990’s, ED treatment didn’t exist.  I wasn’t aware of the non-existence of research, and fell for “therapists” who lied to me and lied to my parents, claiming they “knew all about ED” and in fact, didn’t.  They were faking their way through sessions, saying, “I understand,” but no way did they have any clue what I was going through.  It’s now decades later.  Looking back, I know this.

While I teetered on the brink of life and death, these therapists gave me that unfeeling, blank, bored look, probably wondering how soon the session would end, probably saying to themselves that Julie was exaggerating or a maybe spoiled kid.

I guess it was in 2009 that my weight was low and my T suddenly decided my eating disorder was “life-threatening” so she put on the brakes.  I was then subject to this newfangled “eating disorders care.”  I thought, “After all these decades I am finally going to get what I was begging for all along.” What I found, in fact, sorely disappointed me.

State-of-the-art?  Hardly.  Humane?  Nope.

I would like to say that if you are reading this right now and are not a sufferer yourself, please erase everything you have heard about eating disorders. Medical science as it is has us all wrong.  They haven’t been listening to us, therefore, their “classifications” are so incorrect that it’s shocking.

I’d say if anyone is so determined to classify, there are at least 100 subsets of anorexia, and at least 100 subsets of bulimia.  You can combine the two and get at least another 100 subsets.  As for the act of binge eating, there isn’t just “binge eating,” there  at least 100 different subsets.  So no two of us are alike and we each have our own story.  But does any doctor listen?  No, they don’t want to listen. Because the classifications are ready-made for us, they don’t bother listening to each and every story. They stop listening mid-sentence, and put us into a ready-made category.

So I show up at any doctor’s office and immediately “anorexia” is sitting there, and whatever doctor it is concludes, “Hmm…perfectionist, underlying personality disorder, history of self-harm, substance abuse, sneaky liar, overexercises, throws up everything she eats….” on and on.  Facts: I am not a perfectionist, I don’t have a diagnosed personality disorder, I don’t self-harm, I am not a substance abuser, I don’t overexercise, and I don’t throw up.  And I am ridiculously honest.

What I’ve learned, since 2010, is that “eating disorders treatment,” that is, the assembly-line type that I’ve been in, means violation of every human bodily function, complete stripping of privacy.  It is bodily invasive, via force-feeding, that is, tube, or they watch you eat and demand that you do, or, in a medical situation, via IV, or PICC line, or some kind of tube, this can be court-ordered but usually they simply threaten that they will call security, or get security to hold down a patient whether this is legal or not.  It typically happens to a very young person, away from their parents perhaps for the first time ever, in a weak and malnutritioned state.  It is very tempting for anyone in a higher position (nurse, “sitter,” doctor, specialist, etc) with the least bit sadistic mind to abuse someone emaciated and weak who might be considered unaware and “out of it,” perhaps unable to leave the bed.

I am going to try to find out why it’s so tempting for sadists to abuse very thin people, maybe look into the history of the Holocaust, because I think I might find answers there.  I’ve been up and down the scale in my life and because I am a trained writer, I am a keen observer of humans, so I’ve watched the way folks react to me at whatever weight I’m at.  It’s rather shocking to see the difference.

At the outpatient level, these days you find practitioners who are “recovered” via the mental health system and sadly, these folks are heavily  brainwashed by it.  Many are even still on meds and heavily dependent on “therapy” to get by.  Not that we have to know this.  Many of these are sponsored by hospitals….poster children of groups such as NAMI-like groups or the specific “therapists” that supposedly have the “answers” to anorexia or bulimia.  Binge eating, up and coming.

There are also the rebels, those that claim “doctors hate me” and are setting up practices as gurus, charging huge fees.

I’m frightened by the amount of money both groups of these so-called recovery-touters are making. These include therapists, nutritionists, and “coaches”….on and on.  They are profiting in large dollar amounts. 
The rebel ones that are supposedly alternative, many of them, are raking in huge amounts of dough.  I find the guru-like nature of these practitioners frightening.  Some are flat-out lying about their credentials while others lie about their success rate.
So…at any rate…that’s how I see it right now.  I’m scared by what I see.
I do think there are answers to this and the answer won’t mean emptying out our bank accounts, folks.
For instance, a hug is free, right? To say “I love you” to another person costs nothing.  Walk up to a stranger who appears lonely, or perhaps is crying on the bus, speak to that person, and said, “Hey, I’ve been there….”  You may save that person’s life. Guess what?  That simple act costs nothing. Get my point?
Love, Julie and Puzzle

Feedback and comments welcome!