It's time to update your links and redirect your web browsers:

ED Bites has a new home.

It's now: http://www.edbites.com

Now with more eating disorder goodness.

Hope to see you there!

Consider this thought experiment:

Drop a person in a blender (since it's all hypothetical, go ahead and make it someone you don't like. Feel better? I bet you do!). Then, count all the total number of cells that are produced. Only one in ten of these cells will be human. The other 90%? Those are all microbes. If you look at the total number of genes in your human smoothie (NOT coming soon to a Jamba Juice near you), the numbers are even more skewed: only one in 100 genes are human. The rest are, again, bacterial. The total collection of all of these bacteria living in and on our bodies is known as the microbiome.

The idea isn't to gross out the card-carrying germophobes among us. But let's face it: we're just as much bacterial as we are human. Plenty of these microbes live on our skin, in our lungs and genital tracts. The mother lode of microbes, however, live in our gut. They are crucial to extracting energy from food, and these microbes are extremely sensitive to what we eat. Starving mice for just one day dramatically alters the composition of their gut microbes. Specifically, it decreases a type of bacteria known as Firmicutes. When researchers transplanted Firmicutes into the guts of lean mice, they rapidly gained weight (Crawford et al., 2009)

When it comes to eating disorders, there isn't much talk of microbes. There are the occasional papers from researchers like Sergei Fetissov about potential auto-immune responses in people with eating disorders, and some work on PANS (pediatric auto-immune neuropsychiatric syndrome) and anorexia, but generally, researchers haven't looked at the role of the microbiome in triggering or perpetuating an eating disorder.

Much work has been done in obesity research. Scientists have consistently found that people with a BMI >30 have different gut microbes than people with BMIs in the "normal" range. As well, bariatric surgery also significantly changes gut microbes as people lose weight, making them look more similar to the bacterial profiles seen in "normal weight" individuals. A more recent study in The ISME Journal proposed a microbiome diet: eating foods that would eliminate a type of bacteria called Enterobacter helped a person lose drastic amounts of weight in a short period of time (Fei & Zhao, 2012).

So how are microbes involved in eating disorders? No one really knows. Cindy Bulik has begun a study looking at this relationship, but the results still aren't in. Based on the studies above, it's reasonable to assume that ED behaviors (starving, binge eating, and/or purging) will have a significant effect on a person's microbiota. It still has to be measured, but I would bet a lot of money on it. The question is what do these microbial changes have to do with ED symptoms?

Imbalances in gut microbes in mice and rats have been found to alter patterns of risk-taking and anxious behaviors--something that also happens in people with EDs. They could also, perhaps, explain weight loss seen in anorexia and EDNOS. Maybe the initial restricting triggered a significant change in gut microbes that amplified the effects of malnutrition. Maybe they lacked a group of microbes that produced an important hormone regulating hunger and satiety. No one really knows.

One hint to the potential role of microbes in EDs comes from a study published today in the journal Science (Smith et al., 2013). The scientists studied the relationship between gut microbes and kwashiorkor, a form of severe malnutrition that occurs when a person doesn't eat enough protein. Of the 317 twin pairs from Malawi that the researchers followed for three years, half became significantly malnourished and 7% developed signs of kwashiorkor. Obviously, a lack of protein is crucial to the development of this disease but it's not the only factor as not everyone with a severely protein-deficient diet will develop kwashiorkor. Something else had to be going on.

First, the researchers treated twin pairs discordant for kwashiorkor (that is, one twin had it, whereas the other didn't) with "ready-to-use therapeutic food"- basically peanut butter on steroids. Twins with kwashiorkor had significantly different from nearby twins who (presumably) at pretty close to the same diet. The researchers found significant changes to the gut microbes in the ill children with the use therapeutic food. Discontinuing the therapeutic food caused a regression in the functioning of the gut microbes.

The kicker is this: when the researchers fed mice a standard Malawian diet and inoculated them with microbes from the guts of malnourished children, they rapidly lost weight and also developed kwashiorkor. This happened despite the fact that their diets contained adequate calories. One of the reasons that the researchers believed the therapeutic food is so effective at treating kwashiorkor is that it helped restore normal gut microbes.

To say what effect restoring normal gut flora will have on ED symptoms remains to be seen. Probiotics are a hot item, but much of the research is fairly overblown. There's definitely still potential there, and we need to know more about which populations of people are likely to benefit and which aren't. But it's an interesting idea, and I think we need to know a lot more about the role of the microbiome in the development and perpetuation of EDs.

In closing, a quote from scientist John Rawls in an interview with Scientific American:

“We are in the midst of a revolution of our ability to describe the composition and physiological potential of these bacterial communities...What we can begin to speculate on, though, are the different types of relationships that might be taking place. We know gut microbiota enhance our ability to extract calories from complex carbohydrates, which is clearly a mutually beneficial relationship. But it’s thought that all vertebrates have the capacity to digest and absorb other types of nutrients, such as lipids, proteins and simple carbohydrates, so it’s not readily clear how we could enter into a mutually beneficial relationship with bacteria with regard to those nutrients."

Like I've said before, keeping up on the latest writings about eating disorders is both the apogee and perigee of my work here at ED Bites. Reading other blogs like The Science of EDs is definitely a high point, the apogee. The perigee? Stuff like this article, title "Surefire Ways to Give Your Kids an Eating Disorder."

*headdesk*

The suggestions, according to the blog's author Michelle Lewis, are things like:

• Be critical and abusive
• Expect perfection
• Nurture your own eating disorder
• Be emotionally distant
• Use food as a reward or punishment

A big part of my job both as a science writer and as a blogger here for ED Bites is to read news articles. For ED Bites, not surprisingly, those articles are generally about eating disorders.

Anorexia and bulimia are "dramatically" on the rise.

Obsessive-compulsive disorder (OCD) is one of the most frequently diagnosed psychiatric disorders in people with eating disorders. It is known to make eating disorders more severe and harder to treat, leading to a longer time until remission is achieved. Recently, more and more researchers are beginning to recognize the significance of the overlap between EDs and OCD, and are trying to develop specific treatments targeted at this population.

A 2004 study by Walter Kaye and colleagues in the American Journal of Psychiatry measured how frequently anxiety disorders (OCD is a type of anxiety disorder) occurred in people with anorexia and bulimia. They found that two-thirds of the ED sufferers had been diagnosed with an anxiety disorder at some point in their life. In general, the onset of the anxiety disorder pre-dated the ED by several years. Of the people with an anxiety disorder, 41% had OCD and 20% had social phobia (social anxiety). The problem, then, is very significant.

The gold standard in treating OCD is a form of cognitive-behavioral therapy known as exposure and response prevention (ERP). You can read more about ERP here. The idea is relatively straightforward: You create a hierarchy of the things you're afraid of that would normally provoke a compulsion. For someone who is afraid of germs, something lower on the list would be touching an unused surgical mask. Higher up might be touching a doorknob at a doctor's office or being coughed on by someone with a cold. Together with a therapist, you would begin to expose yourself to these anxiety-provoking situations and then not engage in any compulsions (like hand-washing) to relieve the anxiety. The point of this is to learn to tolerate the anxiety and that you're not going to die if you happen to inhale a few germs.

Some researchers are beginning to use components of ERP to treat food fears in EDs, especially anorexia nervosa. In a 2011 study in the International Journal of Eating Disorders, researchers at Columbia University first outline a behavioral model for AN that is driven by anxiety and obsessionality (see figure below; the caption is copied from the paper).

Figure 1. Model of Anorexia Nervosa. Traits of high baseline anxiety and obsessionality interact with environmental factors such that patients develop maladaptive behaviors, including food avoidance, and rigid eating patterns (or dieting practices), and they experience high levels of anxiety around eating. These behaviors are interrelated in that rigid dieting leads to increased anxiety about food and vice versa. These behaviors result in a diet that is low fat (low energy density) and limited in variety. This, in turn, promotes weight loss. The low weight state feeds back on the baseline traits and leads to increased levels of anxiety and obsessionality.

Anxiety about eating more and gaining weight consistently interferes with weight gain in AN and with interrupting the binge/purge cycle in BN. The idea is that recovery cannot and will not occur unless these fears are addressed. In a 2012 review article in the European Eating Disorders Review, psychologists hypothesize that one of the reasons family-based treatment is successful for many adolescents is that it forces these exposures. Since the patients can't (theoretically) choose what to eat, they can't choose to avoid "scary" foods. Parents are also coached on how to help stop other food-related rituals

A study published earlier this week addressed the issue of treating OCD and EDs, this time in a residential setting. Published in Cognitive Behaviour Therapy, the researchers treated 56 individuals with AN, BN, or EDNOS in an eating disorder program specific for individuals with co-occurring OCD. Of these patients, 41% were diagnosed with AN, 25% with BN, and 34% with EDNOS. Rates and levels of depression and OCD did not appear to vary by diagnosis. After treatment, the researchers found a significant improvement on scores for OCD, depression, and eating disorders, as assessed by a variety of surveys and self-reports. Patients with AN also significantly increased their body weight.

Which is all well and good, but the problem is that this study (nor any others that I'm aware of) compared the treatment group to anything. Other studies have shown that treating an ED generally improves levels of depression and OCD. Was the improvement seen in this study due to regular eating and the prevention of binge eating and purging? What effect did being in a structured environment have? Would these results have been different if the patients weren't treated for OCD? What about if their OCD was treated and not their ED? I realize that actually conducting a research study in that last scenario would be unethical, especially in a group that qualifies for residential treatment, but it's something that should at least be considered in the discussion.

Another question the researchers didn't factor in was the use of psychotropic medication. Eighty-nine percent of patients were on some type of psychiatric medication; the authors said they didn't control for this in their analysis since only 7% started on medication during their treatment. But they didn't mention how many patients' medication was adjusted, increasing or decreasing dose, or changing types and brands of medication. These things can have a significant effect on OCD and depression symptoms (although a recent study indicated that no psychotropic medications appear to be effective for AN)

As well, one of the researchers is the medical director of the treatment center where the research was carried out. This makes me a little skeptical of the results as a matter of course.

The researchers concluded that "Simultaneous treatment of OCD and eating disorders using a multimodal approach that emphasizes ERP techniques for both OCD and eating disorders can be an effective treatment strategy for these complex cases." But how effective? Is it better? How much better? How long did the results last for? There was no follow-up on any of these patients. Improving in a program is great, but the rubber doesn't really hit the road until after discharge.

This study is a start, but it's a small start. Co-occurring EDs and OCD can be very difficult to treat, but many people do go on to develop healthy and productive lives. We desperately need more resarch into the subject, but we need to start making comparisons to help develop the best, most effective treatment possible.

So tomorrow is Christmas. There is a ridiculous amount of hoopla around Christmas, and parts of it I enjoy (lights, decorating, Christmas carols) and others I really don't (the myopic focus on food, the expectation that you will have a happy holiday dinner with family, the commercialization). What helps me is to focus on the other name for Christmas:

Tuesday.

Tomorrow might be Christmas, but tomorrow is also Tuesday. It's just like any other day. It still has 24 hours, and it will not last any longer than that.

Reminding myself that Christmas is just any other day really helps me stay focused on what I need to do for recovery. I eat exactly the same as I would any other day. Yes, some of my food choices are a little different (I probably have less fruits, a little more veggies, and more fats over the course of the day), but in terms of calories and exchanges, it all equals out. For years, I ate the same meal plan I would any other day.

It really helped.

I don't feel the need to stuff myself at dinner because it's any other dinner. I don't get as stressed because I got dinner handled. I know how to do it. Protein, carbs, fats, veggies, and salad. I also don't skip meals or snacks in "preparation" for the big Christmas dinner because--yup--it's just another dinner. If I can, I like to find the menu beforehand so I know what's coming my way, and it helps relieve some of the stress.

I also eat my meals on (close to) my regular schedule. In my family, we usually have a brunch around 11am or so. I don't do well at brunch. I can't stuff myself to get all of the required food in, so I usually have a smallish breakfast at the regular time (assuming, of course, that I get up early enough). The "brunch" is my lunch, I have a slightly earlier snack and a slightly earlier dinner. My evening snack is dessert.

Like I said, I try to keep it like any other day.

It's a balance between trying to be uber-flexible and pretending that the ED stuff doesn't exist (which is ludicrous, because it does) and being so rigid that I can't enjoy the holiday. Some people can go with the flow more easily. Others need much more of a structure. The important thing is finding what works for you. If your recovery would be stronger if you ate a bigger lunch in the privacy of your home, had a lighter dinner with family and then made up the calories when you got home, go for it. I did that for years when I would have to attend a gathering outside my home. It wasn't ideal, but it worked. It kept me in recovery.

The combination of food and family is frequently a disaster waiting to happen. People say dumb things, they bitch about their thighs and talk about their New Year's diets. They comment on your plate and your body as if they were acceptable topics for discussion. They're not. We are thrown together with an array of neuroses, some of which are our own, and it frequently explodes into disaster. The Hollywood writers who portray happy meals clearly grew up on a planet that was very different from my own and the one that most of my friends occupy. Accepting that Christmas dinner just needs to be endured, not enjoyed, also helped me. I didn't have any expectations to be crushed. Assuming everyone survived and no one was arrested meant victory.

So I hope you all have a recovery-oriented day tomorrow. It might not always be pleasant, but as long as you keep moving forward, Christmas will end after 24 hours...just like any other day.

Too add a little smile to your holiday, here's a Grumpy Cat meme I made up just for you:

{{h/t on the title to Hyperbole and a Half}}

It usually happens right as I get ready to go to bed. I check my computer for any last minute messages. This is dumb, I know, though not because I usually receive a message that needs immediate tending. No, it's stupid because it's late, I'm tired, and generally feeling down about what I was able to get done during the day. The story ideas that were rejected, the emails that got no response, and the unshakable feeling that my career is on the fast track to nowhere.

This is generally coupled by social media updates from other writers who are getting props for their latest story, sharing about their latest feature, and so on.

The sneaky self-hate spiral usually goes something like this:

I'm guessing I'm going to get a spate of comments that say something like "But Carrie, I don't think you are on the fast track to nowhere. I think you are totally awesomesauce." Which is a) not why I'm posting this and b) these actually make me feel worse. Because I don't get this disconnect between what I see and what others see. It's a failure.

Like I said, my brain is a landmine. Tread carefully.

The fact is, I've always been this way. I never feel (fill-in-the-blank) enough. Smart enough. Accomplished enough. Talented enough. When in the midst of the ED, thin enough. I constantly feel like I have something to prove.

This isn't one of those nice things to admit--that I can gnaw out my own liver in jealousy and self-hatred. But there you have it.

Earlier this year, I wrote a magazine article about EDs, and a sense of self that researchers call interoception. People with eating disorders are generally bad at this, which some scientists think might contribute to the body image distortions frequently seen in EDs. But this sense is more than just body image or hunger or pain. It's crucial to a sense of self. It's something that I have a lot of problems with.

I've often wanted people to tell me who I am. I have my likes and dislikes and I'm learning to be okay with my own peculiarities. That's not as much what I'm talking about. What I mean is that I think I'm moderately smart because people tell me I'm smart. It doesn't come from my own internal knowing of this fact. I enjoy writing, and I can tell that I don't suck at it, but I don't think I'm especially talented at it. Other people have told me that I am, and I believe that they think so, but it never would have actually occurred to me.

It's why I fell in love with the scale. It was something I could KNOW. My weight was either up, down, or the same. I didn't have to debate and wonder. I didn't have to rely on what someone might tell me and their potential agenda in telling me this.

It's also how I get stuck in the sneaky self-hate cycle. I don't feel accomplished, so I assume that this must be the case. If I don't have all of these external things telling me that my career is going okay, that I'm accomplishing stuff, then I don't feel okay at the core of myself. I know the solution is to (duh) stop comparing myself with everyone. But it's hard when you don't have that internal sense of self and so you rely on your position relative to everyone else.

What I really need to find is off switch for my worrisome brain. Somehow I doubt that will happen.

I've gotten emails from several people over the last few weeks about finding a therapist, knowing if s/he is for you, and so on. Others have commented on progress (or lack thereof) with their therapist and whether to leave or stay.

One of the arguments in favor of staying--or for what people are looking for in a therapist--is that the person is "nice."

Believe me, I understand this argument. I've been there. I wanted someone nice, someone I could pour my heart out to. I wanted someone to whom I could confess my deepest thoughts and secret desires. I thought this person should be a therapist. In all honesty? I should have just adopted a puppy.

Here's the thing: talking only gets you so far. As someone said at this year's NEDA conference, "Insight doesn't lead to behavior change. Behavior change leads to behavior change." We want to feel loved and accepted and that's not a bad thing. I'm not dissing nice people or feeling heard and validated. But just having someone listen to you isn't going to treat your eating disorder. "Nice" is often code word for "They don't push me into actually making any significant changes."

Being a complete jackass does not make for a good therapist any more than being nice does. I'm not advocating seeing a meanie. I am advocating thinking long and hard about why you are seeing a therapist in the first place. Presumably, you have a problem. If you're reading this blog, chances are that problem involves an eating disorder. So before you go looking for a nice therapist, it might help to think what you want to get out of therapy.

Maybe it's "I want to feel better." Not a bad goal. Now try and think about how, in reality, that might happen. Recovery from an eating disorder usually involves feeling worse before you start feeling better. Feeling better involves doing things like normalizing eating, learning how to socialize and make friends, working on perfectionism. This, not infrequently, sucks. I've had therapists be too nice and not push me to do this because they knew, on some level, how hard it was going to be.

Take my cat. When I first adopted her and she finally stopped hiding under the couch, she liked to jump up on the top of the fridge. Although Her Royal Fuzziness could get up, she didn't quite master getting down. The first few times she got stuck, I hauled out the step stool, climbed up, and rescued her. After a while, however, it got to be really annoying. She kept getting stuck on the damn fridge. Finally, I left her up there for about 10-15 minutes. She was not happy. But I also didn't want her getting stuck up there when I wasn't home, and I also didn't want to be getting her down every day. So I let her stew on the fridge for a bit, tried to drive home the point that, you're welcome to climb on things, but you also have to get yourself down. After her time was up, I got the stool and grabbed her down.

I never had to do it again. I'm not sure whether she stopped going up there or (more likely) she finally figured out how to get herself down. Letting her up there was not a nice thing to do, but it worked.

It's sort of like that with a nice therapist. We tell them about our problems. We talk about how awful the ED is making our lives, is making us feel. And they listen and nod and hand out tissues and seem to get it. Then we leave their offices and go back to the awfulness and nothing changes. It seems to be a good deal because we get to feel like we're "working on recovery" because we dutifully see a therapist for our 50-minute hour, and our therapist gets to be nice and caring and build a relationship with his/her client.

Recovery, though, remains stagnant.

It reminds me of one of the human behavior truisms I've discovered over the years. People don't change when they see the light, they change when they feel the heat. Feeling the heat is uncomfortable. It can seem cruel to insist that a person gain weight when they say that gaining a pound will make them feel suicidal, or that they would rather die than eat that ice cream.

That isn't to say that being an asshole makes you a good therapist, because it's not true. A good therapist listens well, helps you problem solve, is non-judgmental, knows what they are talking about, provides you with an outline of what therapy is going to look like, what the goals are, etc. Nice isn't a bad thing, but it doesn't mean you're a good therapist.

I didn't start getting better until I started seeing a therapist who wouldn't put up with my bullshit. She made it very clear what the ground rules were, and she pushed my forward almost ruthlessly. She did it out of ultimate kindness, but, believe me, she wasn't always nice about it. At the same time, I really respected that. I respected someone who didn't play into the "sick identity" of being anorexic and treat me like I couldn't handle life because I was ill. No, it was "You need to eat, you need to gain weight, and I will help you. You won't like it, you probably won't like me at times, and I'm okay with that."

I had to stop looking for nice therapists and start looking for those who would help get me well. Many of these therapists were nice, but that wasn't how they got me well.

I was initially hesitant to do this interview because I don't think that publicizing these websites is necessarily a good thing (I know many people who first started visiting pro-anorexia sites after hearing about them on TV). That being said, ignoring an issue never works, so there you have it.

I think the interview went really well, all things considered. You can see my dorky Santa teddy bear coffee mug at some point, I believe.

{{Note, there is some talk of rather low calorie diets. If that sort of thing bothers you, then I would advise not watching it.}}

Like so many people with EDs, I'm not all that into change. I don't like it. I prefer what I know. I'm okay with trying new things in small doses, but it has to be on my terms or else I freak.

Case in point: my knitting group got a whole bunch of new members this week. Actually, some of them were there last week, too, but I wasn't, so everyone is new this week. At first I was really unsettled. Several "regulars" were there, but I was sitting surrounded entirely by people I had never really met. Considering that this involved change AND meeting new people, and my brain was having a Class A hissy fit. I almost left--but I had been working on finishing up some Christmas gifts and I was still sipping my latte, so I stayed.

Somewhere in the middle, I started to relax. To try and go with the flow. To remember that many of the regulars were once new people, and they were now a crucial part of our little group. I tried to focus on the fact that we were all yarn junkies, and all there for the same general purpose.

Really? It ended up being not all that bad. The new girls (we do have one male in our group, who does actually knit. His work is just beautiful) won't replace those who have left, and it wouldn't be fair for me to ask them to. That's just not how it works. But at the same time, they were fun to be around, and you can't really hope for much more than that.

I'm reminded of every time Facebook changes the layout of the pages. At first, everyone pisses and moans and starts groups that say "Bring back the OLD Facebook!" What's ironic is that the layout will change once again, and people will start getting all starry-eyed for the layout they once protested. It has become their new normal. They got used to it. And they will get used to the new changes, too.

I'm trying to remind myself that not all change is bad. It's inevitable, and it's not always positive, but it's also not always bad, either. I don't think I will ever be fully comfortable with change, and I don't know that I need to make that my goal. There are lots of things in life that I don't like (changing the kitty litter, paying bills, etc) but I know have to be done and so I do them. Maybe that's how I need to start understanding change and new things in my life. I often can't stop things from changing, so accepting it is the next best step.

Lest you think I'm normal, let me provide you with yet another example proving otherwise. When my print version of the International Journal of Eating Disorders arrives in the mail, I totally geek out. Last month was no different. I've generally seen most of the articles before, as they are published online before they appear in the print journal, but I like sitting down on my couch with the journal and reading what's new.

What struck me about one particular study in last month's journal was not the study itself, but rather a reaction to it on Facebook.

What the study found

The researchers, which included recovering ER physician Suzanne Dooley-Hash, evaluated a series of 942 adolescents (ages 14-20) who showed up in the emergency room for any reason. They were given a computerized questionnaire, which evaluated (among other things) them for the presence of an eating disorder. The SCOFF questionnaire is below. Marking yes to 2 or more questions was considered positive for an eating disorder.

The researchers also assessed the patients' BMIs, and the presence of tobacco, alcohol, and substance abuse. Interestingly, BMI was associated with the presence of an eating disorder, but maybe not in the way you would expect. The teens with a BMI over 30 were actually most likely to test positive for an eating disorder- they were 3.2 times more likely to show signs of an ED than so-called "normal weight" adolescents.

Overall, the researchers found that 16% of the teens shows signs of an ED, and that nearly 30% of those with ED symptoms were male. Frankly, I think those numbers are a little high, as the SCOFF seems to evaluate a lot for disordered eating as much as a clinical eating disorder but that's outside the scope of this blog post.

But what's the denominator?

This, of course, brings me to the Facebook comment. In full, it read:

In the "International Journal of Eating Disorders" that came in the mail today I read a fascinating study on the prevelance and correlates of eating disorders among emergency department patients ages 14-20.  

They found that in a screening of nearly 1,400 patients that 16% screened positive for an eating disorder. That is much higher than the average of .5-1% for AN, 1-3% for BN, and 3-5% for EDNOS typically reported. In addition they found nearly 27% of those screened were male, much higher than the less than 10% typically reported. 

This supports much of the research we see that ED is on the rise, and that boys and men are just as much at risk.

Sad. We have much work to do.

 Here's the thing: the researchers were screening adolescents who were in the emergency room. This does not mean that that 16% of teens have eating disorders. It means that 16% of patients who were in this particular emergency room answered yes to at least two out of five questions on a survey.

Let me repeat: this study does NOT mean that 16% of teens have an eating disorder. Although the author of this comment didn't directly say this, it was sort of implied in the part where they said that "EDs are on the rise." One would likely expect that teens in the ER would be more likely to have an ED given the high levels of physical and psychiatric co-morbidity that they have. My guess is that people with EDs are much more likely to wind up in the ER than people without EDs. As well, teens are at higher risk for EDs and disordered eating, which further explains the high numbers.

Nor is this evidence that EDs are on the rise. I don't think there have been previous studies looking at the percentage of adolescents presenting to an ER who have ED signs and symptoms, so it's impossible to say whether these numbers are more or less than before. As well, the current research on the number of EDs in the US or elsewhere isn't all that great, so I'm rather cautious about saying whether EDs are on the rise. My bet is that we are certainly more aware of them, and so people might be more inclined to seek care (or be pushed into care, as the matter might be), but again, that doesn't mean that EDs are more common.

When evaluating these statistics, it's important to remember the denominator; that is, the portion of the population that the researchers are surveying. Here, it was adolescents in the ER. I bet you could find 100% prevalence on an inpatient eating disorders unit. We rightly should not be alarmed that so many people have eating disorders if these statistics were surveyed. Well, obviously people being treated for eating disorders almost certainly have an eating disorder.

The study is important in that it shows that ER docs can play an important role in identifying EDs. Most of them have their heads too far up their asses to actually do anything about it, but it is good and useful information. I don't like the SCOFF survey (like, at all), but it is quick and dirty, so I understand why they might have used it. Other than that, I think the study is very useful, but we all need to be careful how we interpret and talk about these results.

So it's been a long time since I've last blogged. Like a really long time.

I feel bad that I've abandoned my blog and my readers, but:

It was really good to get away. Like, really really good.

Here's the thing: I was obsessively writing and thinking about eating disorders with the publication of my book, and then all of the editing. Add in blogging on top of that, and I was pretty much thinking of eating disorders non-stop for several months straight. The irony was that, for once, I was actually getting the hang of this recovery thing and therefore I didn't have to be thinking about EDs when I wasn't actually thinking about EDs.

I needed a break from eating disorders after all of that. Blogging had become a bit of a chore, which isn't what I ever wanted this blog to be for me. So I took a little blogging vacation, to re-evaluate what I wanted this blog to be, and to see where I wanted to go from here.

Over the past week or so, I've really begun to feel the pull to start blogging again. Which is why I'm here. I have quite a few posts in my head, which is something that hadn't happened for a really long time.

Anyway, I'm back. Apologies for my absence.

On Friday, I got asked to participate in a live Internet TV segment on "Invisible Eating Disorders" with the Huffington Post. It was during the day, and I'm guessing not many people got to watch, so I'm sharing it here so you can watch at your leisure.

I was super nervous--I hope it didn't show!

http://live.huffingtonpost.com/r/segment/50363b9478c90a5766000013

{{Sorry- I can't figure out how to directly embed the video segment into the blog post. If anyone has any ideas, let me know!}}

Despite the fact that I've been blogging less (okay, a LOT less), I still think about eating disorders. Not just in terms of my own recovery, but also in more philosophical and general neuropsychological terms. I was listening to an audiobook by VS Ramachandran the other day, and he was talking about theory of mind. This got me thinking about how people without EDs (and even people with EDs) try to understand another person's disorder.

Theory of mind is the technical neurological term for trying to figure out what someone else is thinking. Quoth Wikipedia:

Theory of mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own.

If you see someone reaching for a glass of water, you assume that they're thirsty. After all, that's generally why you reach for a glass of water: you're thirsty. Water is something to drink. Ta-da! You don't have to be thirsty to understand that someone else might be.

Crucial to understanding someone else's motivations is understanding our own. We know what thirst is, we know that water makes thirst go away, we know we have to bring the glass of water to our lips and swallow.

So what does this all have to do with anorexia? Most of the research related to eating disorders and theory of mind has been with regards to any potential deficits in this area in sufferers. One 2004 study didn't find any problems with theory of mind in a group of 20 anorexia patients; a separate 2010 study found that AN women did have difficulty identifying others' emotions, which is one aspect of theory of mind. Bulimia patients were more attuned to others' negative emotions, according to research published earlier this year.

All of this is good to know, but it still doesn't tell us how other people understand what it's like to actually have an eating disorder. I don't know whether or not this research has been done, or even how you would go about measuring it if you did. But crucial to understanding anyone's experiences of anything is theory of mind.

Imagine this: someone at work has stopped bringing their usual PB&J sandwich to work and has started bringing salads. They talk of wanting to lose weight. To the average person, it looks like your co-worker is on a diet. Like so many others, your co-worker wants to be thin. Unlike most people, however, this "diet" doesn't stop after just a few pounds. Your co-worker still talks of wanting to lose weight, no matter that they don't have any weight left to lose. Then you learn that it's anorexia.

The only way a non-ED person has of understanding anorexia is from their own experiences. Most people have been on a diet. They've grabbed flesh in the mirror and strained their necks to see if these jeans do, in fact, make their butt look fat. Anorexia looks a bit more extreme, but most people have never found a plate of spaghetti more horrifying than a plate of snakes. This diet mentality is all people know, the only frame of reference.

It's dangerous on several levels: 1) people think they know what it's like to have an ED because they juice fasted for a few days and 2) EDs seem to be about wanting to be thin. Of course, many ED behaviors are the dogged pursuit of weight loss, but weight loss isn't really the motivating factor. It's a fear of fatness, a fear of losing control, an ineffable fear that defies being put into words.

This is also, to some extent, how people with eating disorders try to explain the craziness in their minds to other people. Dieting is readily available, easily understandable cultural currency. Any woman I ran into could understand exactly what I meant when I mentioned my worries about what I was eating. We were motivated by different things, but it made sense for me to be worried about my eating and exercise habits. Everyone else was. I couldn't describe what the rest of my anxiety was about, and food seemed like as good of a scapegoat as any.

Chime in: What do YOU think? Have people had difficulties understanding your ED? Has anything helped others gain a better idea of what it was like?

My friend Kathleen MacDonald shared this on Facebook earlier today, and she graciously gave me permission to share it on my blog. I hope you enjoy.


‎"So how did you turn things around?" is one of the most common questions I get about my recovery-process. I wish there was an easy/short answer...but there isn't. (don't worry --this won't be one of my lonnnnnnnnnnnngggggg-winded status to detail the answer) ~ There were several key components to my final recovery process that led to me becoming recovered...here are a few:

a. I got serious about nutrition and I stopped making me the "exception" to needing to eat
b. I got serious about gaining body fat
c. I learned to be comfortable feeling uncomfortable and I didn't fall back into the disease every time my body image felt like hell or my guts distended/I felt pregnant
d. I got serious about the fact that every purge could be my last
e. I got serious about the fact that it wasn't safe to exercise (I ended up taking nearly 2 years off from exercise --which was really hard to do) when I was under-nourished and under-hydrated
f. I realized that I needed to 'over-nourish' my body in an effort to replenish and repair all the damage done (even if my bloodwork was 'normal')
g. I kept Kitty Westin and Ron & Sally Crist George in my heart/prayers ever day 
h. I put God in the center of my recovery-process (along with nutrition)
i. I did not listen to the doctors who told me that I had to give up gluten and dairy b/c I had "intolerances" -- of COURSE I had intolerances to those foods...I had intolerance to most foods b/c my body was so screwed up from all the years of 'dieting'
j. "suicide is not an option" became my mantra -- no matter what, suicide is never the answer
k. I disconnected myself from unhealthy relationships
l. Recovering became my number one focus --above school, fun, relationships, etc... First Job = recovering
m. I dared to dream that RECOVERED existed and I sought after it with all my heart (it exists, trust me!)
n. I put the emotional stuff on hold until my brain was better healed - (and guess what --after my brain was healed and I was thinking clearly for the first time in 16 years, I realized that the emotional stuff that had caused me so much pain and trauma...it wasn't as bad as my ED brain had convinced me...and I was able to heal from it vs. sink into deep despair)
o. I got rid of life-expectations that I had for myself (ie: I must have my Ph.D. by the time I'm 30)...and I just focused on recovering...and I trusted that Ph.D programs would still be available when I was recovered ;-)
p. I stopped trying to help others and I learned to 100% focus on me
q. Gretz, the Super Setter --enough said.
r. I learned to forgive myself
s. I ate thru the pain
t. I stopped purging
u. I stopped believing that I was ugly
v. I stopped believing that my body is less-than-beautiful when I am healthy
w. I stopped thinking that cellulite is ugly
x. I got rid of my scale
y. I healed my body image issues thru nutrition, 'sitting with it', and thru learning to see myself and everyone else thru the eyes of God --which means that I see every single human being as beautiful.
z. I never gave up on the enigmatic power of Hope.

It sounds pretty ironic that someone with a very public blog on eating disorders isn't always open about her disorder in real life. I always told the truth if someone asked, though they rarely did. But after so many years of being known as the Girl with Anorexia, I didn't want that identity to keep following me.

I was more than a little embarrassed and ashamed about the years I spent sick, and it wasn't something I wanted to advertise to people. "You know that time when I got trashed on my 21st birthday? Right, that never happened because I was in the hospital..." And so on. I wasn't proud of it. As I moved from place to place and away from the people who knew me at my absolute sickest, I found I could conceal the worst of my history.

Part of the concealment was my own desire for privacy. My psychiatric rap sheet is really no one's business. For some reason, spilling my guts on the Internet to a bunch of strangers was less daunting than disclosing the same information to co-workers or classmates. They could have Googled me, I suppose, but I generally didn't look them up online, and I'm fairly curious, so I'm guessing they probably didn't.

There are other reasons I don't like bringing up my eating disorder that are sort of the last vestiges of ED thinking. My worst fear is that someone will tell me that I look far too fat to have ever had an eating disorder.  Or "But you don't look like you have an eating disorder..." Which we all know is a load of bull. An eating disorder is a mental illness. It doesn't come with a very heroin chic "look". Except tell that to the fear-laden lizard part of my brain.

But with my book coming out in the fall and with me getting a more realistic grip on many of my fears, I've started to open up a bit more. A big thing for me was telling my book club group. I had posted about finally finishing the manuscript back in February on Facebook, and I had a book club meeting the next night. I was asked about it, and I honestly thought about giving some sort of vague, non-sensical answer, but then I realized that I would be lying by default to some of my friends. It also wouldn't be giving them much credit. So I said that I wrote about anorexia, my experiences with the illness, and some of the latest science.

The world, you should note, didn't stop turning. I thought I felt it lurch, but no one else did.

It's funny that I can be so open about my ED on the strange, vague online world but totally clam up in person. I think it's the issue of shame, when you get right down to it. I am not proud of my eating disorder, not really. I'm proud of overcoming it, proud of the things I learned, but the illness itself? Nah. That's not a bad thing. But there's a difference between not being proud of something and being ashamed of it. I can kind of turn down the shame a bit on my blog, but it's much harder in person.

I'm finding, though, that most people don't actually judge me because I've had anorexia. At least, not the people I spend a lot of time with and think are worth telling about my eating disorder. I guess that's part of the point of my writing a book, too--helping people learn that an eating disorder really isn't anything to be ashamed of. Every time I share my story, it invariably happens that someone says "I had an eating disorder, too." It's a relief for me to hear that I'm not alone, and I'm guessing it is for them, too.

So it's been a while since I've blogged. Like, a really long while.

Here's the thing: I've been really busy with life. I have a new relationship, I've been keeping busy with my writing and book editing, and the ED stuff has been actually pretty minimal. It's still there, of course, but it's not front and center in my life. I've also gotten into a groove with recovery. It's less of a full-time job and more of a habit. Which means that it can still be annoying and time-consuming, but it takes less conscious effort.

It's not so much that I haven't had stuff to write about, it's just that this stuff hasn't been ED-related. Despite the fact that I have a (very) public blog, I'm actually quite a private person. I don't mind sharing recovery stuff because I don't feel like I'm violating my own privacy by doing so, and also because I think that the sharing provides something positive. With my life now, there's less benefit in sharing, and more of a sense that I'm airing dirty laundry that really doesn't need to be aired. I don't like involving other people in my blog, not because I'm sort of demented megalomaniac, but because no one in my life asked to be on my blog. I don't want to put anyone in any awkward situations because of something I said that later comes back and bites them in the ass.

Like me, ED Bites is continually evolving. The blog isn't going anywhere, but I will probably post a little less frequently and discuss topics from different perspectives.

I appreciate your patience during this time.

I'm temporarily putting the project on hold for several reasons.

1) I want to get the data/statistical information all sorted

and

2) I'm busy with work-related stuff so I don't necessarily have lots of time at the moment.

If any of you have good epidemiological or statistical data on ED prevalence, please feel free to share. You raised some good points, and I want to be sure everything is as accurate as possible before I go ahead.

I've been busy with life these past few days, but I've still been thinking about things. What I've been mulling over recently is the idea of eating disorders being "life-threatening." Which they are, but saying "life threatening" doesn't explain the full force of suffering caused by an eating disorder.

Many people with eating disorders suffer with symptoms that aren't immediately life threatening. Their symptoms might be turning their bones into bubble wrap or slowly rendering their digestive system useless. These things can become life-threatening. But mostly we ignore them.

By "we," I mean, of course, the ED sufferer who generally never feels sick enough to even warrant a diagnosis let alone the understanding that their disorder is slowly killing them. I also mean the "we" in the medical community who kicks you out of the hospital the second your potassium levels are no longer in the basement or won't even admit you unless you are in danger of dying within the next 24 hours. Also the "we" in well-meaning but clueless loved ones, who think that you're all better because your head is no longer permanently in the toilet or your bones are covered in a thin veneer of flesh.

I know that, for me, I can generally handle a serious crisis with (relative) calm. But as the crisis drags out, we become inured to it. We get used to it. We adapt. So all of a sudden, it doesn't seem like much of a crisis. We can't live in constant crisis mode. So we adapt. I think that's some of what happens with eating disorders. I've told myself (and, for that matter, my treatment team) that I can't be that sick because I still weigh X pounds more than I did at my worst. Never mind that I'm crashing harder and purging more and my body is no longer as tolerant of such things. But all of these behaviors become normal and when I would get shocked gasps and stares when I mentioned all of what I was doing, I was baffled. I had a job, I was in grad school, I was just bloody fine.

Then there were the times that the symptoms and suffering caused by the ED were relatively constant but not putting me in immediate physical or psychological danger. It's the kind of suffering that slowly wears you out, body and soul. The kind of suffering where you structure your entire life around your disorder such that you have no hobbies, no friends, nothing. Just Carrie and the ED, sitting in a tree, K-I-S-S-I-N-G. The kind where your weight was just normal enough that you weren't passing out regularly and your periods came mostly, and you would get complimented on your appearance all the damn time but you honestly didn't care. You hated yourself, your body, your life. You didn't understand how people didn't run away from you without screaming in fear and disgust.

So how do you measure this kind of suffering? Can you even measure it?

I've looked at the quality of life scales and you fill out the questions and get your number and plug it into your data set. They're clean, simple, easily analyzed. So clean and simple that it's easy to become disconnected from what the numbers really mean. We can say that eating disorders have a negative impact on quality of life, and it is important to say that. But that's just the starting point.

I think it was Stalin who said, "One death is a tragedy. One thousand deaths is a statistic."

I'm a data nerd. I love statistics and numbers. But it's also very easy to gloss over what those statistics really mean. We can talk of how many people die of eating disorders, but that doesn't even begin to calculate the total suffering caused by the disease. That doesn't account for the relationships lost, families torn apart, and general physical and mental hell.

It's a sobering reminder, really.

I am honestly thrilled and inspired by the response thus far to the 1 in 20 project. I am in the process of getting a web domain for it, and I will keep you posted.
One of the questions that I've frequently been asked about my little graphic is the "life-threatening" bit. Are all eating disorders life-threatening? And what does life-threatening even mean?

Here's my take. No, not everyone with an eating disorder is at immediate risk for dropping dead from physical complications or suicide. It also doesn't mean that most people with an eating disorder will die as a will die as a direct result of their disorder. Yet, when you look at the statistics, you see that someone with anorexia is 12 times more likely to die than the girl sitting at the desk next to her in class. This girl is also about 60 times more likely to attempt suicide.

IrishUp, one of my readers who I've been lucky enough to meet twice and on whom I have a massive brain crush, said this in a comment:

In medical terms "Life-threatening" is applied to any diagnosis, symptom, or condition where the risk mortality is considered high - particularly if untreated mortality is high.

This should not be confused with ALTEs - apparent life threatening events. These are situations where there is sudden respiratory arrest or obstruction, or acute severe cardiac or neurological abnormalities. One of the things that qualifies EDs as "life threatening" is that someone with active ED behaviors is at SUBSTANTIAL risk for ALTEs.

And let's remember that one of the real problems with EDs is that we (medical we as well as parental we) can't really tell when an ALTE is imminent. The way the body responds to the perterbations that ED behaviors subject it to, is to keep up homeostasis on vital functions for as long as possible, by pulling required resources from non-vital functions. And it keeps doing that until the biological reserve is used up. Which often doesn't show up on labs until the ALTE is already in process.

The acute elecrolyte imbalances from vomitting that can cause siezures and sudden cardiac death are another risk. You may not even be able to detect imminent events in a patient getting monitored daily.

LT is, of course, somewhat relative and subjective. When we are talking about somewhere between 0.6 - 1% mortality per year in a population whose expected mortality is 0.012%/yr, we are talking about GREATLY increased risk of death. When 10yr survival rates are less than that of (most) childhood leukemias, I think we can safely call EDs Life Threatening.

The fact that people don't react to ED the way they do to cancer is a huge part of the problem.

That's why I used the term "life-threatening." Too many people still view EDs as a choice or a phase, and they don't really understand that EDs are deadly serious.