I read many news stories about eating disorders every week--most of them are okay.  I don't feel that they've turned the world upside down with great knowledge, but they also aren't heinous.

Then there are the heinous stories, about which I need to splutter in verbose dismay because I can't think of anything else to do.

Let's start with the title, shall we?

Addictions & Answers: Behind the insideous 'art' of anorexia

Okay, just to clear up any misconceptions here: ANOREXIA ISN'T ART.  It's not pretty.  It's not insightful.  It doesn't bring value to the world.  Watching your hair fall out in chunks, watching your skin turn yellow and gray, watching your kidneys stop working--this has nothing to do with art.

Being so afraid of eating, or the consequences of eating, isn't art.  It's an illness.  We don't call cancer or diabetes or mesothelioma an "art."  We seem to reserve that concept for eating disorders.  Stop making eating disorders into something they're not.  This so-called "art" kills thousands of people, and precious few people take it seriously.  We need a lot less art concepts and a lot more illness concepts.

I love metaphors, and I have used metaphors a lot to try and explain my own experience of having anorexia.  But there's a difference between using a metaphor to describe something ("It was like being trapped in a burning building") and actually using that something as a metaphor ("The burning building is like our society").  Frankly, I find it insulting and demeaning.  Anorexia-as-art smacks of vanity, of something less than serious, that maybe I huffed a few too many turpentine fumes on my way out the door.  Nuh-uh.

Onto the actual article...An excerpt is below:

BILL: Can't these people just look in the mirror and see something is radically wrong?


DR. DAVE: That's like saying to a meth addict, 'Can't you see you're killing yourself, why don't just stop?'


BILL: Dave, not the same. The meth addict is out-of-his-mind high. The alcoholic who dies in a one car crash or even the gambler who suicides in a deep depression rather than face his creditors—these are things our readers can understand. The closest I can come to understanding anorexia was when someone called it "the art of starvation."


DR. DAVE: Exactly: People like Isabelle Caro and Jeremy Gillitzer are addicted to view starvation as a kind of body image art.


BILL: An art they can totally control.


DR. DAVE: When the 87-pound anorexic loved one is genuinely horrified about how a stick-thin arm is "too fat," and pushes away the plate, barely touched, their families are baffled.


BILL: I can see how easy it is for parents to miss anorexic behavior. Aren't they in the midst of their own post-Christmas diet rituals --Jenny Craig "personal counselors," the new Weight Watchers "Points Plus" programs, and the rest? OK, Doc -- how does a parent or lover intervene to end this addiction?

"Body image art?"  So having anorexia is like getting a tattoo?  My only response to that is WTF, buddy?

The drunk, the meth addict, the gambler are all out of their minds, but someone with anorexia--a diagnosable mental illness--is somehow perfectly sane?  It's not just a bad choice.  The chaotic eating patterns in any eating disorder mean that the brain is painfully, thoroughly affected.  Someone with an eating disorder is exactly like a meth addict or someone as drunk as a skunk.  Their brain isn't working properly.  They need to detox before they can start behaving rationally.  Most starving people aren't completely rational--the men in Keys' Minnesota Starvation Study showed that rather well.

The last thing that really irked me is the comparison of anorexia and dieting.  An eating disorder is not an "extreme" diet or a diet gone overboard.  It's not uncommon for an eating disorder to start as a diet, but that doesn't mean that an eating disorder is a diet.  A suicidal person is often depressed and in a bad mood (trust me on this one).  Suicide isn't just a really rotten mood.  It isn't something you deal with by watching a funny movie and hoping it will go away.

One of the best things about the Internet is that everyone has a voice.  One of the most frustrating things about the Internet is that everyone has a voice.  Some people--especially these two--shouldn't have microphones.  It's one thing to peddle your whackjob theories on your own personal blog, but to have an official "stamp of approval" from a news organization is ridiculous.

Model and actress Isabelle Caro, most famous for posing her emaciated body in a 2008 anti-anorexia billboard, died at age 28.

Her goal, says the Los Angeles Times obituary, was to show others the dangers and horrors of anorexia in order to prevent the illness.  A noble and honorable goal, to be sure--but Caro knew and lived these dangers and horrors of anorexia, day in and day out.  Still she could not shake her illness and instead died at age 28.

The billboard that flung Caro into the limelight was produced by fashion company Nolita, in an effort to raise awareness about anorexia in the fashion industry.  Aside from the fact that I'm not convinced of the relationship between anorexia and fashion, Nolita was happy to use Caro's wasted body in their ads.  They were happy to use the shock value and run with it.  Yes, the company likely meant well by it, but what was that phrase about the road to hell being paved with good intentions?

After the April 2008 billboard, Caro went on to be a guest judge on "Top Model France," to write a book and song lyrics, to appear in television and film.  All while deathly ill with anorexia.

When I heard of Caro's untimely death, all I could think was: these people were using this poor girl.  They knew she was sick.  It was obvious just by looking at her.  They knew she was dying from a lethal illness and yet the chose to look the other way.  Maybe they figured that as long as Caro thought she was fine, then she had to be fine.  She was "trying" to get better, but your heart, your liver, your immune system don't much give a damn about trying.

It was like what I used to tell people: I'm working on it.  Which is all well and good, but Caro's and my lack of progress should have made it damn clear to anyone not blind that no progress was actually being made.

Yeah, I'm angry.  Media outlets and corporations were all too happy to let Caro continue on her merry way and not actually address her illness.  I'm guessing some of them told her she should gain weight and eat some more.  Gee, you don't say.  Caro had probably never heard that advice before, right?  If they cared, they should have refused to cast her until she was healthy.  It's hard enough to give up an eating disorder even when it's robbing you of everything in your life.  But when you can have the life you want and the eating disorder? 

The immediate cause of her death wasn't disclosed.  But the media industry--the very ones Caro turned to in her efforts to warn others of the dangers of anorexia--did quite a bit to contribute to her death.  She very well might have died if she didn't become famous.  Yet the people who knew and worked with her had an opportunity to close down any path but wellness and recovery.  And they didn't.

That's what makes me the most angry and the most sad.  That so many people are willing to ignore such a blatant disorder and look the other way.

As much as I love keeping up to date on ED news and research, I sometimes cringe when I click on a link.  Is the author of this news story going to screw it up?  Will they have done their homework?  Much of the time, the stories are a mixed bag--some bits are okay, some could use a bit of tweaking.

Every once in a while, though, someone knocks it out of the park.  With these two stories, though, the authors didn't do so in a good way.  It was awful.  I don't know whether I blame the journalist more, or I blame the people they interviewed.  Or both.

So for the first one:

Is Victoria's Secret Peddling Eating Disorder Porn?

No, Victoria's Secret is peddling overpriced unmentionables.  They're also peddling sex and clothes that make your partner want to do you.  They're peddling an image.  They're peddling an image of a sexualized, idealized women with huge boobs and a tiny waist.

It's very common for people with eating disorders to compare themselves to these idealized images and find themselves wanting.  It's also very common to try and lose a few pounds or get breast implants.  All of which are a waste of time and money and form a tremendous drain on society.  But really?

Eating disorders existed long before women with gigantic breasts and push-up bras paraded around on national television. In the Middle Ages, women with eating disorders compared themselves to holy women and other saints.  Those were the idealized images of what a woman could be, if she tried hard enough.  Part of that trying involved fasting for religious purposes. 

Today, some people with eating disorders fast for cosmetic purposes, or to be better at a sport or it just sort of happens.  It could very well be that women in the Middle Ages had a variety of reasons that motivated their behaviors.  They probably did.  The world may very well be a better place if Victoria's Secret disappeared. It would definitely be a better place if we stopped promoting only one body type as beautiful or sexy.  But whether there would be fewer eating disorders?  I'm not entirely convinced. 

These images, and our society's obsession with food and fat, are the cultural backdrop against which eating disorders occur.  We use and co-opt this language to help explain what we're going through.  Although exactly what motivates an eating disorder is far from irrelevant, motivation doesn't always explain causation.

Which brings me to the second article.

Butler Hospital Physician Too Familiar With Eating Disorders

Based on this doctor's quotes, however, I might advise a little more familiarity before saying such things as this:

Qualls said the disease usually arises from a person’s unhappiness with their appearance.

The media play a role in the equation, he said, providing a model of the body that may not be realistic or healthful for people to strive to imitate.

...Diseases such as compulsive purging or not eating tend to occur during transitions in life, he said. Among them: girls going from eighth grade to high school, “which is a triggering event because all of the sudden boys become more important,” he said. “The next change is when they go into college. Once they experience [a disorder], they are at risk of this recurring at any point for the rest of their lives.”

*headdesk*

In case this isn't obvious by now: my eating disorder had nothing--nothing--to do with wanting to look good or attract men.  Nothing.  I thought that eating better, exercising more, and yes, maybe losing 5 pounds would help me feel less depressed.  After a while, I knew I looked atrocious.  I thought nothing about sex and dating.  I knew that the ED was destroying my health and appearance, and yet I couldn't stop.

The concept of "re-education" sounds very Soviet, and maybe it is, but I kind of want to have an intensive training program for these journalists and especially these doctors before they are allowed to even see another ED patient.

I'm spluttering not so much at this article about insurance refusing to cover bulimia treatment (though the situation is very much splutter-worthy), but at the comments.

Generally, I don't read the comments on news articles mostly because they're either from extremist wingnuts, they're irrelevant, or people use the anonymity of the web to act like immature jackasses.  But I started reading the comments on this article, and my eyes just saw red.  I've gotten used to a lot of the misconceptions about eating disorders ("Just eat a sandwich!"  As if that hadn't occurred to me...) and although they're annoying, I understand that much of them stem from a lack of knowledge rather than sheer idiocy.  That is, I have hope that this person will one day understand EDs a little better once they have more knowledge.

These comments, however, are the epitome of sheer idiocy.  Some examples:

Blue Cross/Blue Shield is my insurance carrier as well. I will call and support them in this decision and I hope many more call and support this decision. I don't want to pay for her care. She is an adult, she needs to take care of herself. I'm glad this has been on the news. It brings awareness to many of us, of the crazy things people try to get insurance companies to pay for. No wonder this country is in a health care crisis. If we all get a disease then we can all be on easy street. WHATEVER

They don't help many child genetic issues either. The disabled children in this country and the Veterans in this country can't even get the medical help they need. So, why does this family feel that their daughter's condition is worthy of help? As far as I am concerned they can pay for it out of there pocket. I have to pay for "most" of my disabled child's medical bills, because insurance won't pay them. Do you see me ranting on tv and picketing the insurance company? No!!!

Or

Let her parents support her! Why should the insurance company pay. In the end all of us that have insurance with BCBS will be contributing to paying for her care. I too am going to call them tomorrow and agree with their decision to not pay for her care. My grandparents need medical help,they have cancer, the insurance company don't pay all of their bills. They act responsible and pay their bills, they don't go picket the BCBS office. They pay for their own home care.

The logic is so bad it's astounding.  Yes, getting sick drives up health care costs.  We will all get sick and it will cost money to get it treated.  Unless you have a way to prevent all illness (and something tells me if you're this blatantly stupid, you don't have the extra neocortex to come up with something so groundbreaking), then we're going to get sick and need insurance.  Any questions?

Also, I think some of these people have picket envy.  If you're pissed off, go picket.  It's your right.  You're allowed.  But don't get pissed because you can't/don't/won't take such a stand.

I just end up incensed when people (some of whom are in my family) see an eating disorder as the self-indulgence of a pampered kid.  I was exercising for hours a day on a broken foot--that's not being pampered.  Something primal in my brain was driving that, something that can't be explained by wanting to stay on my parent's health insurance policy (which wouldn't have happened because I was 28).  If that was the case, the curing an eating disorder would be as easy as refusing people with EDs health insurance.  It has happened to me (I am, literally, uninsurable), and I didn't spontaneously recover once that occurred to me.

I know I shouldn't let the little bastards get to me.  There were supportive comments on there, too.  I know most people try to understand.  But every now and again, the ignorance just astounds me.  I don't wish an eating disorder on anyone, but sometimes, I do wish these people would be able to experience an eating disorder from the inside before they open their gaping, ignorant maws and spew forth utter crap.

Writer Naomi Wolf was the keynote speaker at NEDA this year, and I honestly wasn't sure I was going to hear her speak.  Not because I'm anti-feminist (I'm not) but because I've read her book "The Beauty Myth" and I didn't find it that relevant to my own experience of an eating disorder.  I'm glad I went as a) it wasn't as bad as I feared and b) I found that many people had a similar response to what Wolf had to say.

I've heard Wolf speak before, and she is a phenomenal, engaging speaker.  She's super-articulate, very intelligent, and she knows her stuff.  I very much respect her and what she has to say.

However...

Although I think our cultural ideas and beauty obsessions and diet mentality are absolutely toxic, I don't think that if you eliminated them, you would eliminate eating disorders.  Most women feel bad when they're looking at Photoshopped models.  Most women diet at some point.  Most women don't have eating disorders.

(Not to mention, what about men?  What about people who live in cultures when thin isn't overvalued?  What about people with non fat-phobic anorexia?)

It's not uncommon for an eating disorder to start with an effort to "tone up" or "lose a few."    Yet once the disease process starts--once it kicks in--appearance is the last stinking thing most people with EDs are really thinking about.  People told me that my ED was making me look atrocious.  I was aware, on some level, that they were right.  By that point, the ED had a life of its own.  I was terrified of eating.  Even if it didn't have calories and exercising didn't burn any of them off, I would have still felt compelled to starve and exercise.  I couldn't stop.  That's why it's an illness.

I'm aware that the only evidence based prevention programs for eating disorders have focused on improving body image, and I'm not saying they don't work.  The research literature shows they do work.  But in a survey of 6000 eating disorder sufferers, no one said that their eating disorder had anything to do with vanity or cultural ideas (I heard this in a presentation by Susan Ringwood, the CEO of the UK charity B-EAT).  They did say that cultural ideals made it harder to recover, something I definitely endorse.

Eating disorders existed before thin was in, and they will probably exist after Size Zero seems as antiquated and misguided as chastity belts and foot binding.  The cultural language of fat and thin and dieting are what we have to put our experience into words.  They are how we frame what is happening to us.  People in the Middle Ages framed anorexia has an effort to be more spiritual.  Now, we look at it as an effort to be thinner or look like some supermodel.  But the way we make sense of an illness is different than the illness itself.

It just fundamentally bothers me that fighting eating disorders is seem as (in large part) fighting the fashion and cosmetics industry.  They use our obsession with being thin and such to sell products, it's true.  They make lots of women feel insecure about their looks, and then go on whackjob diets.  The body dysmorphia that accompanies an eating disorder isn't just a really bad version of wondering if these pants make your thighs look fat.  Being beheaded isn't just like a really bad paper cut, either.  An eating disorder isn't a really extreme diet.  It might look like that, but it's fundamentally different.

Wolf mentioned nothing about underlying vulnerabilities like anxiety and depression to eating disorders.  She did say that restricting in and of itself is crazy making, which is good.  Although she said that "parents don't cause eating disorders," she also said that her own mother's bitching about her thighs primed her for anorexia.  None of her other siblings developed an eating disorder, yet I'm sure they all heard the kvetching and comparing.  Why Naomi?  Why only her?  It's fundamentally not okay if your mother is diet-obsessed and tells you you're too fat.  Not okay.  And that sort of environment is certainly conducive to the development of an ED, but it's impossible to say that had this person grown up in a different environment, they never would have developed an eating disorder.

It was...frustrating at times to hear no mention of science and biology.  My friend Sarah Ravin asked Wolf afterwards why there was no mention, and Wolf said "I don't really do that science stuff."  I understand that science might not be everyone's little pet, but seriously?

The emphasis on beauty images only reinforces the idea that EDs are an expression of vanity, or just a bunch of beauty-obsessed kids who need to stop reading magazines.  And they're not.  Our focus on this does everyone a disservice.

In my Twitter timeline this afternoon (you do follow ED Bites on Twitter, don't you?), I read the following tweet from the magazine Psychiatric Times, by way of The Canyon treatment center.

Trauma, rage, depression, codependency other issues may be at the root of most eating disorders.

The tweet linked to this article here: Eating Disorders' Underlying Issues.

I'll admit that any PR article has my journalist's bullshit radar on high alert. Remember, a press release is trying to sell you something--in this case, a treatment center, but they can also be selling a viewpoint, product, or idea. But press releases aren't going anywhere, and if you take them with a grain of salt, you'll usually do okay.

What made me twitchy was the use of the words "underlying issues" and about stuff being at the "root" of eating disorders. It's not that I don't think pre-existing and co-morbid conditions are irrelevant to eating disorders--far from it. They absolutely play into how and why someone might stumble into an eating disorder and then stay there.

But that doesn't mean that these issues are an "underlying cause." At the root of an eating disorder is an eating disorder. For whatever reason, a person with an eating disorder processes information about food, eating, exercise, and often weight in a very different way. To them, starvation may anesthetize anxiety or depression. Or maybe binge eating and purging helps alleviate social discomfort. If this didn't happen, you wouldn't have an eating disorder.

I'm not against addressing underlying disorders--much of the work I'm doing now is to address my anxiety issues. This untamed anxiety really drove my eating disorder. Starving and overexercising gave me relief. But addressing these "underlying issues" without first addressing the eating disorder is like trying to fill a bucket with a large hole in the side. It's kind of futile.

Refeeding alone isn't enough. Sitting someone with an eating disorder in front of a plate of food and just saying eat isn't enough. ED'd people need lots of support. Remember, the eating disorder does have some perceived benefits. Saying "Go home and eat a sandwich" isn't going to cut it. But a crucial part of treatment involves getting over your fears of eating that sandwich.

I always resented people digging through the midden heap of my life, looking for the "root cause" of my anorexia. The rage I had was primarily starvation-induced (even the men in Key's Starvation Study had anger outbursts). I didn't have any traumas, and therefore I figured I couldn't really be sick because I didn't have a reason to be. And so I spent years trying to find a cause to my eating disorder to the almost complete exclusion of addressing my actual illness.

If you have a tumor, you don't want to begin treatment until you figured out the underlying cause for your cancer. This isn't to say that it's not important to take a good look at your environment and remove any carcinogens, but that's not a reason to delay treatment.

I'm not saying that issues of trauma, bullying, depression, etc, shouldn't be addressed in treatment. In fact, I think they must be addressed to ensure full recovery. But that's not the same as saying that these things are an "underlying cause" of an eating disorder.

The death of any young person is almost invariably a tragedy. But when I heard of Erin's death from anorexia, the tragedy seemed much worse. Not because of the specific cause of death (an eating disorder) but because her death was completely unnecessary.

I've only heard the tip of the iceberg when it comes to this family's suffering for almost 20 years, and it is already almost unimaginable. Even the diagnosis of anorexia can be tragic, but when the system colludes with the eating disorder and gives the family and sufferer the finger, well, that just adds insult to injury.

Yes, some cases of anorexia are harder to treat than others, and Erin's wasn't an easy case. But some cancers are more difficult to treat, and we don't sit around and ask the tumor why it doesn't want to stop growing. Cancer cells keep dividing; that's the nature of the beast, and we don't blame the damn cells, we just do everything we can to keep them from dividing. So why is it that people with eating disorders are fundamentally expected to want and embrace recovery when everything in their brains is telling them to keep starving, bingeing, and purging?

Anosognostic and angry patients aren't easy to treat, and it's all to easy to comply with an anorexic's stated wishes rather than her unstated needs. We all do it- it keeps the peace, allows us to continue in our lives with a minimum of fuss. But an eating disorder can mean that a patient's wishes and desires can become deadly. Patients want to leave treatment prematurely. They want to remain at a low weight. But these are symptoms of the eating disorder rather than true inner desires of the patient. I don't understand why it's so hard to separate these two facts. In Erin's case, the system blatantly didn't separate her eating disorder symptoms from her true needs, and now Erin is gone and there's not a damn thing any of us can do about it.

It's easy to think that at least Erin isn't suffering anymore, that if she couldn't be helped, then it was better this way. Maybe these sentiments are true--I don't know. But as soon as I think this, I want to shake myself in utter frustration. We know how to treat eating disorders. We do. We frequently suck at it, but we know how to treat EDs. Erin didn't have to die. She shouldn't have had to wait to want and embrace recovery before her treatment providers removed every option but recovery. When the prospect of getting better is so exhausting and frightening, and when your brain feels so much better when you are ill, it's no wonder that many sufferers simply find recovery a difficult concept to embrace.

Erin was almost certainly labeled "chronic" and "resistant," which are pretty much key words for "hopeless" and "palliative care." I know I got all of these labels. Talk about depressing and demoralizing--I doubted my own recovery enough. The last thing I needed was someone telling me "I can't help you." What ultimately made the difference for me was not my sudden willingness to gain weight but a therapist who left me with no other option but recovery. By doing this, she was telling me that she believed I could get well.

Erin won't get this chance to get well. Her mother won't get to plan her wedding. Erin's death wasn't a sudden freak occurrence that caught everyone off guard. It was the result of years of illness and years of our health care system's neglecting to properly treat her illness. Her eating disorder killed her, yes, but our fucked up, outdated, and shortsighted medical system played just as large of a role.

I was watching NBC earlier today, and there was a preview for the newest season of "The Biggest Loser." The ad copy said something along the lines of "the best of competitive weight loss."

And all I could think was: this has to be one of the most idiotic phrases I've heard.

For what other medical condition (if obesity is, indeed, a real medical condition) do we use competitive treatments? What's next? A chemotherapy competition titled "The Smallest Tumor" where higher and higher doses of chemo are administered in an effort to get the smallest tumor by the end of the show? Will there be oncologists telling the vomiting and balding cancer patients to stop being such babies, and if they want the smallest tumor, they need to suck it up and deal? Or how about a diabetes competition titled "The Lowest Sugar"? You might fall into a coma and die from all that insulin, but it's a small price to pay, right?

I have been in DC this weekend, and I had some follow-up lab tests (my insurance is only on the East Coast) on Saturday morning. I got an email from my doctor with a summary, and all my labs were normal.

The problem was the text of the summary. Here it is, verbatim and [sic].

Good morninig Ms. Arnold,
Results were all good. Total cholesterol a bit high, but not high enough to require meds. Diet, exercise, weight loss. Take care.

If you are sensitive to swearing, stop reading now...

Has this douchebag even READ my fucking chart?!?

The last time I saw him, during my relapse and before I left DC, he wrote "anorexia nervosa" on my lab slips as my diagnosis--and rightly so. What the FUCK is he doing telling someone with anorexia to LOSE WEIGHT?!? And someone with an exercise addiction to, you know, EXERCISE MORE?

And does he not know anything about high cholesterol in anorexia? As far as he knows, I'm still underweight. He hasn't physically seen me since I've been weight restored.

Maybe it was a mistake and an oversight- doctors are, in fact, human. (I should know- I'm friends with several of 'em) But an oversight like this? Are you fucking kidding me?

He will be getting a letter from me, but later today. When I can use other "f" words like Fred and frankfurter.

I think I've blogged on this before, but the recent uptick in "-orexia" terms in the news have me more than a little annoyed.

"Brideorexia" is defined by the Urban Dictionary as "When a bride goes overboard trying to get skinny for her wedding day." The dictionary uses the term in a sentence as: Damn, How did she get so f*cking skinny?!?! She came down with a case of brideorexia!

I get that the Urban Dictionary isn't the Oxford English Dictionary, but would it be too much to ask for a hint of accuracy and classiness? A woman isn't absolved of an eating disorder when a ring is slipped on her finger and she does shopping for the Pretty White Dress. Nor does the Pretty White Dress provide immunity from developing an eating disorder. It might be more expensive than almost any item of clothing she has bought before, but it's still just a dress.

"Drunkorexia" means that a person restricts their food all day to "save up" for the calories consumed during a night of alcohol consumption. Now, the comorbidity of eating disorders and alcoholism is well known and sadly rather common. But drunkorexia isn't the lone purview of sorority girls and frat boys at a kegger. Alcoholism and eating disorders can and do exist side by side. But this isn't particularly novel, and certainly not a "new" disorder. The struggle of those who deal with both EDs and substance abuse shouldn't be minimized by some cutsey name.

"Stressorexia" typically occurs when working moms get too stressed or busy to eat, and begin the cycle of weight loss and disordered eating. Stress is a big trigger for eating disorders, and I certainly see how stress and loss of appetite can lead to the beginnings of an eating disorder. But unlike several publications have observed, stressorexia isn't a "new" eating disorder. It might be a new cadre of excuses why you can't eat or don't have time to eat or why you've lost weight. It might be a new background against which eating disorders are expressed. But seriously? The stress/eating disorders link is hardly a new disorder, nor is it separate from any other eating disorder.

I'm not against publicizing a surge in eating disorders amongst working mothers, and certainly those women who will strive the hardest to be the "perfect" mom and employee will be the most likely to fall victim to an eating disorder. And there's a big difference between using stress as a reason to skip lunch and lose a few, and an eating disorder that may result.

We also have pregorexia, where a pregnant woman is afraid to gain the necessary weight for her and her unborn baby. It's described as "the pregnant woman's eating disorder," as if it's something to covet. A pregnant woman with an eating disorder is precisely that: a pregnant woman with an eating disorder. And women with eating disorders are not refusing to gain pregnancy weight out of desire to be like some thin celebrity; they're afraid to gain weight because of a life-threatening eating disorder. Someone who wants to stay thin during pregnancy might have issues, but it's different than an eating disorder.

There's manorexia, which is a man who is anorexic. Other than the presence of a Y chromosome, it's still anorexia. A male's experience of an eating disorder would be different than a female's, but that doesn't mean it's a different disorder. A 12-year-old girl's experience of anorexia is different than mine, someone who is nearly 30, but no one would diagnose her with "girlorexia."

Would they?

A new proposal by French lawmakers would require that airbrushed photos are labeled as such. Similar laws have been proposed in the UK (two news stories on the subject can be found here and here), on the grounds that these ads can be "very damaging." Eating disorders are usually cited as one of these damages, along with more general body image woes.

Rachel at The F Word blogged about the subject here, and compared the issue of labeling airbrushed ads with the warnings on cigarettes. And to some extent, I agree with this line of thinking. These ads are damaging. Younger and younger girls are dieting. People think that they can actually look like the models in the ads. Body dissatisfaction is eerily normal.

All of these things are very bad. Even without mentioning eating disorders, I think we need to take a long, hard look at what our ads are teaching. A label, even just to identify that these images have been digitally altered, is a place to start. More and more people find smoking distasteful, less associated with the virile Marlboro Man and more associated with stink and lung cancer.

What I object to is having this legislation linked directly to eating disorders. The French proposal is headed by an eating disorders expert and is part of an ongoing campaign against eating disorders. An Australian article on the subject said that

"[French Parliamentarian Valerie] Boyer said being confronted with unrealistic standards of female beauty could lead to various kinds of psychological problems, in particular eating disorders...

"These images can make people believe in a reality that often does not exist," Ms Boyer said, adding that the law should apply to press photographs, political campaigns, art photography and images on packaging as well as advertisements."

I agree that this false reality (that all so-called "beautiful" people are thin, etc.) is troublesome and plays right into eating disordered thinking. I mean, two days before I was admitted to the hospital, I had people asking me for diet tips! Plenty of people without eating disorders have similar delusions that I do.

However, these delusions are the result of an eating disorder, not a cause.

I'm not naive enough to think that Size Zero and airbrushed models have nothing to do with eating disorders. They're part of the cultural backdrop against which eating disorders are expressed. In the Middle Ages, the obsession was with fasting and holiness. This didn't cause eating disorders, either, though it did alter the meanings people ascribed to their symptoms. Learning how to live in this fundamentally effed-up environment is one of my major tasks in recovery. I try to participate as little as possible, but short of turning hermetic, there's going to be Cosmo on the newsstands and I'm going to see pictures of "scary skinny celebrities" and celebrity weight gain. I intend to fight it, but in the meantime, I have to live among it.

Our culture has a damaging obsession with food and weight and appearance. This needs to stop, even if it doesn't prevent a single eating disorder.

I had a fantastic time in Minneapolis at the NEDA Conference this year. I got to meet a huge array of people who I knew electronically but whom I had never seen in person (Twitter friends and FEAST-y moms, this means you!). I got to have lengthy discussions with Walt Kaye, Cindy Bulik, and Jenni Schaefer. I finally got my copy of Eating With Your Anorexic signed. I learned a bunch of new stuff about eating disorders and in general it was a great weekend.

Great, but not perfect.

I waited to write this partly because the internet connection was crap and cost $14/day, which was something I wasn't willing to spring for after I realized just how crappy it was. I also waited to write this because I wanted at least a little perspective and not to jump in, all emotion mind, and really put my foot in my mouth so far that I could tickle my ileum with my big toe. How much perspective I've gained in the last 24 hours is hard to say, but I haven't changed my mind.

So. Let's start with the good stuff, shall we? There was a lot more discussion of science and research and evidence-based treatment than I heard the past two times I attended the NEDA conference. This is a Very Good Thing. The more knowledge we have of what works--in part so that we can jettison what doesn't--the better off the treatment world will be. Cindy Bulik's talk on Friday afternoon about the current state of ED science was fascinating and will warrant its own post.

The Not So Good Thing about all of this is that phrases like "evidence-based" and "family friendly" have become marketing buzzwords that don't necessarily have a basis in reality. Non-rigorous outcome studies (ie, paying people to respond to surveys and not following up on those who don't respond) are not only worthless, they are also misleading. Furthermore, none of these so-called outcome studies have been published in peer-reviewed journals, which makes them as believeable as pharmaceutical research published by drug companies. Viva Viagra, anyone?

Second, assertion of evidence-based treatments may be true, but they likely don't comprise a majority of the treatment used. I mean, I guess an hour of CBT a week is better than nothing, but if you're paying for treatment that's $1000 each day, it seems kinda silly in retrospect. In the literature I read (which, admittedly, was not exactly a random sampling, but I read quite a few), I didn't hear mentions of EDs a biologically based mental illnesses or "food is medicine" or any of the stuff that we now know to be true of eating disorders.

Instead, these centers have glossy brochures in various shades of green or purple with smiling happy people, with the occasional male or token minority thrown in for good measure. For all of the talk I've heard within treatment centers about Photoshopped models, it sure is ironic that the people used in treatment center advertising are overwhelmingly white, have no zits (they don't even have pores!), and they all have straight white teeth. There aren't any pictures of food* outside a glass of water or a rare green apple. Many treatment centers use photos of flowers/trees/leaves and show stunning vistas of mountains and deserts. Those centers that use Magic Ponies in their treatment have pictures of said Magic Ponies. The copy tells prospective patients how warm and caring this place is, how they will get to the bottom of the pesky emotional issues at the root of their eating disorder, and how they will restore a "lean, healthy body weight."**

Like I said, this is advertising. Take your blinders off when you're looking at Cosmo and Vogue, but keep them off when you look at treatment centers.

And saying "family friendly" is nice, but in many treatment centers, that friendliness only goes as far as Mom and Dad's checkbook. One FEAST mom specifically asked different centers how they included parents and got a lot of hand-waving. She followed up by asking how parents contributed to eating disorders, and many responded "Well, we don't blame them, but..." But almost every center I've been at and other people have been at and I've heard of certainly holds parents responsible in some manner for their child's eating disorder.

This is neither family friendly or evidence based. It's nonsense and bullshit.

I remember being excited when I first started hearing people outside the fairly close-knit ED research community using these terms. They really get it, I thought. All of my advocating is really working. Although I've started to see changes (the eating disorder program at UCSD and the University of Chicago, and UNC-Chapel Hill come immediately to mind), most treatment centers throw these terms to those of us advocating for science and evidence like sticks to a dog. Entertaining but hardly significant.

Go get the stick, Fido! Go get it! Good boy! Sit. Stay.

I'm tired of sticks and Milkbone crumbs; I want a nice big can of Alpo. You have the chance to do something meaningful and important- please use it.

Maybe this is just my innate cynicism leaching out and spilling over. It could be. I'd really like to be wrong on this, but I don't think I am. I'm not anti-treatment center, I'm just anti-bad treatment center. I'm anti-false advertising. I'm anti-say one thing and do another. And it's all too common.

*Not that a photo of a bucket of KFC is exactly a great marketing tool, but the main aspect of treatment is, you know, food.
**Um, did you not learn in medical school that fat is an important part of a healthy body? If you're going to be teaching me not to be afraid of fat, this strikes me as vaguely hypocritical. Restoring fat is crucial to patients with AN. It's not pleasant to the sufferer, but don't conspire with ED fears by reassuring me that all I'll gain is muscle.

I first learned about hypermetabolism in my second treatment stint (first residential stay). Up until then, I didn't know that when you start eating again after a long period of starvation, your metabolism typically goes a little bonkers. This is some pretty useful information.

What I also didn't know was that your metabolism stays elevated long after weight restoration, making this time period even more fraught with difficulties and possibly contributing to the high levels of relapse. I think this is useful, necessary stuff that so many treatment providers don't mention because an eating disorder isn't about the food, or so they say. Except it does become about the food if you can't maintain your weight, or you start bingeing and purging, so I think it should be out there, in the open.

Which brings me to my point: my metabolism has once again skyrocketed. And I fundamentally don't like it.

Some of the discomfort is related to the eating disorder: feelings of guilt and shame at having to eat so much more than others, wondering whether I'm going to gain weight from this, thinking that it would be an awfully convenient way to drop a few pounds. Some of the discomfort isn't: I'm tired of the near-constant cooking and meal prep, of the obnoxious grocery bills, of constantly having to be thinking of food and eating.

How I have to approach food and eating right now is pretty much the polar opposite of how people in the US are "supposed" to think about food. Low fat is not a smart option for me, and when you need over 3000 calories to maintain your weight, "healthy" isn't so healthy anymore. I don't get to "eat whatever I want" because of my freaky metabolism- if I ate what I wanted, I can guarantee you it wouldn't be this much. Instead, I have to be careful and mindful and responsible and eat what my body needs.

I'm simply frustrated and exhausted. I second guess all of my food choices, all the time. Have I had enough protein? Too much fat? Too many calories? Am I eating too much in the morning, too much at night? Would a bigger breakfast help? Should I include more fruits and veggies? And when I go to buy food- what about the costs? Can I find item X cheaper? Should I spend money on supplements like Carnation Instant Breakfast? What about premium ice cream like Ben and Jerry's? What about everything I was told about how wasteful it was to buy Ben and Jerry's because it was so expensive? Should I ignore that?

I kind of want to bury my head in the sand for a while, and just let this pass.

Reading back over what I've written, it seems like a long "oh poor me!' whine. I don't know- maybe it is. I only wish eating were simpler, less fraught with the moral perils I've internalized. And I keep getting discouraged that there doesn't seem to be an end in sight.

I just got a brochure in the mail from my health insurance company today telling me about all of their "wellness" initiatives. Some of which--like smoking cessation--are no doubt a good thing. Yet all of this focus on wellness makes me feel more than just a bit uneasy, and I finally figured out why.

It's a way to blame the patient for their illness. Get the flu? Obviously you didn't wash your hands enough, stood by a sick person, didn't get the flu shot, etc. Now I'm not saying that washing your hands is bad- I do have OCD, after all. The same thing with cancer prevention: you didn't get your mammogram/colonoscopy/prostate exam frequently enough, you ate too much of the wrong foods, you didn't eat enough of the right foods, you didn't exercise enough, blah blah blah.

Promoting health is good, but the understanding that people are going to get sick anyways sort of gets lost in translation. Humans want to avoid bad things; it's good for the gene pool, if nothing else. I'm not saying that people should say screw it and ignore that rectal bleeding and inhale flu-laced sneezes. But even if you do everything "right," you still might get sick.

And even if you don't- even if you buck the advice and just try and live your life- and you still get sick, that's okay.

We can't prevent everything. In our zeal, I think we forget that. Even with eating disorders, 100% is essentially impossible. People will say that of course, we don't think we will ever have a world with no eating disorders. But then I see ads that say "Until eating disorders are history..." and I have to wonder.

Obesity gets the lion's share of "wellness" initiatives directed at it and is pretty much the most stigmatized medical condition I can think of. If you'd only eat fewer calories than you burn, you'd be thin. Right? Except it's a little more complicated than that. Instead of addition and subtraction, think path integrals.

Patients get blamed enough. Many medical professionals unwittingly assume that something you did led to you're being in their office. Maybe that's true, maybe it isn't. But no matter how much money we pour into "prevention" and "wellness" efforts, people are still going to get cancer, they're still going to get diabetes, and they're still going to be fat.

And you know what? That's okay.

I have two very lovely green bell peppers in my possession, and I was poking around the internet, trying to find a good recipe for stuffed peppers.

On one of the sites, I noticed a section called "Light and Healthy," which made me stop.

How did low fat get defined as healthy?

I mean, yes, it's somewhat obvious, if you read a newspaper these days: we're all freaking the hell out over obesity. And the underlying assumption there is that fat=unhealthy. Then, we take the assumption one step further and equate foods with fat with fat people. Ergo, low fat is healthy.

Right?

The obvious corollary is that everything else is unhealthy. I mean, if it's not in the section labelled "healthy," what what in the hell else are you going to define it as? When you're looking at a site with thousands upon thousands of recipes, and one small section labelled "Light and Healthy," then surely we're all doomed.

Not so much. Your health is very personal- when I had to gain weight, low fat wasn't healthy for me. Even now, the number of fat grams in a recipe doesn't say anything about how nutritious it might be. Or if it's what my body needs.

It's a pernicious little assumption, and on every cooking site, the low fat/low cal/low carb recipes are all in the "healthy" section. Other sites will "healthify" a recipe for you, by taking out as many "extra" or "unnecessary" calories and fat as they can and still leave you with a product that vaguely resembles the original. I don't care if there are sections labeled "low fat," because that's a description, not an assumption.

We need to stop assuming that low fat or diet food means healthy, and start defining food and health in different ways.

A search on Google for "manorexia" yields 85,300 hits.

Dennis Quaid had anorexia.
So did Billy Bob Thornton.

They didn't have manorexia.

Yes, a guy's experience of anorexia will be different than a woman's (see yesterday's post), but it's the same illness.

So stop trying to make it different.

I understand that people want to emphasize that eating disorders aren't just "a chick thing," and that's very good. But calling it "manorexia" seems to separate it from the "other" eating disorders, further shunting men away from the ED mainstream as it were.

From a neurochemical standpoint, it's the same illness. It is.

So please, stop.

With all of the -rexias. You're really making me anorexi-rexic.

The new ad campaign for the Sealy Posturepedic mattress is "A Better Six."

The commercial goes something like this:

People need about 8-9 hours of sleep, but they're lucky if they get six. So why not get a better six hours of sleep? And the Posturepedic mattress is supposed to give you a fantastic six hours of sleep.

Maybe it does. I don't know- I've never tried one of these. But if you need eight hours of sleep and you're only getting six, the best mattress in the world isn't going to make you more well rested. A crappy mattress (like the ones I had at camp or college) can make eight hours of sleep feel like six, but a good mattress CANNOT make up for much needed sleep. It can't.

I find it appalling that our culture accepts and even encourages things like not sleeping enough and not eating enough. It's a subtle competition among some of the people I know, especially when we were in school.

"I only slept five hours last night."
"Lucky- I only got four!"
"Wow, I wish I could do that."

And on and on the conversation goes. Please note: I was the one getting four hours of sleep. That stress on my body eventually made it give out.

I see the "Better Six" mattress like the faux diet food out there. Those 100 calorie packs of Oreos? Don't taste anything like an Oreo. Frankly, they're not bad. But they're not Oreos. By a long shot.

And six hours of sleep isn't eight. No matter what kind of mattress you have.

Like I said, I emailed Michael Dow of the Pen and Paper Diet about his press release in which he said that his diet (basically count all your calories plan) was a good solution for anorexia and bulimia because:

"If a person consumes the appropriate amount of calories for one's height, age, sex, activity level and weight, then one can maintain their ideal weight," says Dow. "This diet will be ideal for those that struggle with anorexia and bulimia because it can enable these individuals to maintain their weight at the low end of BMI like they would prefer while digesting their food," Dow says.

Someone with anorexia or bulimia is not granted some special dispensation by their diagnosis that they get to magically choose their own weight. I was sufficiently tweaked, as Laura might say, so I emailed Dow, who replied in the comments on my last post.

Here (in all of its shining, happy, long-winded, pissed-off glory) is my response:

Mr Dow,

While I do appreciate your responding on my blog, I think I'm going to have to essentially disagree with you.

The easiest way to "manage your weight" is called intuitive eating: eat the foods you find enjoyable/palatable, eat when you're hungry, stop when you're full, and move your body for fun. In fact, it's about managing diddly squat. It's about responding to the natural hunger cues your body is sending you anyway.

Your friend in high school who was anorexic may have seen herself as starving to lose a few pounds- I know I did. Right until I landed in the hospital on heart monitors. That's the problem with eating disorders: we don't know there's a problem so we can't stop. People with eating disorders already count every calorie and every fat gram and every single calorie burned. I would have hour-long debates with myself as to whether it was okay to chew a stick of sugar free gum, and if so, how long I would have to chew it in order to burn off all of the calories.

Furthermore, people who are in recovery from anorexia often need vastly more calories than other people of their age/height/weight/activity level. At one point, I was eating 4500 calories per day to gain about 2 pounds per week. Obviously my metabolism had gone haywire. And it tends to *stay* a bit haywire as the body repairs itself. The paper is here: Abnormal caloric requirements for weight maintenance in patients with anorexia and bulimia nervosa.

You said: "[Anorexics and bulimics] instinctively know that if they control what they consume then they can help control their weight."

Let me be super clear about this: eating disorders are biologically-based mental illnesses. They are NOT about controlling weight. In fact, they are NOT about control. When I was 50 lbs underweight and living in a haze of ER visits and hospital stays, when I was blacking out several times a day and my lips were blue and my fingernails were blue and there was this strange fur growing all over my stomach, I was still being asked for diet tips. So you're not alone in thinking that eating disorders are about controlling your weight. But it's just not true.

And here's the really paradoxical thing: as you approach your healthy weight (not the one you plucked out of the air because you liked the number or how it felt, but the one that your DNA says you will be the healthiest at), the need to control your weight loosens a bit. It's a disease driven by neurochemicals and malnutrition and horrific anxiety and fear. The need to control your weight and calories and such are symptoms of anorexia, not causes of the disease.

The predisposition to anorexia and bulimia does not, incidentally, involve a sudden, burning ability to control one's weight through calorie counting and exercise. The predisposition involves differences in serotonin and dopamine levels, as well as higher rates of anxiety and mood disorders.

Oh, and the "disposable income" we should spend on research? I don't have any. I've spent all of it trying to recover. My treatment has cost almost *half a million dollars* over the years. Besides the numerous hospitalizations, residential stays (at $1,000 per day, and not covered by insurance, I might add), day treatment programs, therapists, psychiatrists, dieticians, medications, and gas for appointments, I also had major ankle surgery due to a trimallelar break from anorexia-induced osteoporosis, ER visits for dehydration and seizures, MRIs and EEGs for seizures, neurologist visits, doctor appointments, missed work, not to mention the food needed to restore weight and get well. And I didn't have a lot to start with. People with eating disorders come from all economic groups, not just those with disposable income.

Yes, I am frustrated and annoyed because these beliefs are all too common. And I often feel I am beating a dead horse. It's just that every now and again it whinneys, and I once more pick up my stick and start whacking away.

Is it just me, or is it really freaking ironic that one of the most famous horses is named Mr. Ed?

Anyone who has been diagnosed with an eating disorder in the US has no doubt faced the confusing and labyrinthine process of getting coverage and appealing those denials.

Says an op-ed piece called Starved for adequate care in the LA Times:

The case highlights the issue of "medical necessity" that lies at the core of so many eating disorder-related health insurance battles, and that will be central to any health insurance reform. How does an insurance company decide who is sick enough to warrant treatment or hospitalization? Whom do we hold accountable for decisions about which treatments are "medically necessary" and which aren't?

Answers are hard to come by because insurers deny or severely limit coverage for an eating disorder -- as with all mental illnesses -- based on a medical assessment process that is neither uniform throughout the industry nor transparent...

...The American Psychiatric Assn. has issued clear guidelines for the care of patients with eating disorders (including when to hospitalize and discharge them). Insurance companies, however, are not compelled to follow these guidelines and seldom do. Nor are they required to heed -- or even listen to -- a patient's own doctor. Instead, they use the catchall term "medical necessity" to differentiate those who merit coverage from those who don't, without defining the term.

With insurers ducking behind this meaningless lingo, patients and their exhausted families can only mount appeals, face mediation or sue. But corporate stonewalling, quibbling over claim-filing technicalities and other bureaucratic minutiae often simply wear them down.

Smith's parents lost their daughter to an insidious disease that is much better understood than it once was. But the gap between what doctors and researchers now know about anorexia's deadly risks and how it gets treated in the real world of the health insurance system was, in Smith's case, too wide.
(emphasis mine)

The article is passionate and poignant- but there are heights and weights listed for one of the patients, so if that is triggering, just stick to the portion I've shared here.

For sufferers of eating disorders, who often don't understand how sick they really are, being told "you're not ill" is like being slapped in the face twice. It adds to the guilt and feelings of I-don't-deserve-anything. The road to recovery is long, hard, and rarely straight. Health insurance shouldn't throw obstacles in the way.