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Now with more eating disorder goodness.

Hope to see you there!

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Gut feelings: EDs and the microbiome

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."

Surefire ways to piss me off

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."


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
In contrast, here's what the scientific literature says about "surefire" ways to give your kid an ED:

That's right--nothing. The research literature indicates no definite cause of eating disorders. The links in both biology and environment serve to increase or decrease risk. This is true even for other diseases like cancer. A 10-pack-a-day habit certainly dramatically increases your risk for developing lung cancer (as does baking in a tanning bed and skin cancer), but it's not "surefire." Lots of smokers don't get cancer, and plenty of people who do everything right DO get cancer. 

In her defense, Lewis later said that she meant things that would promote body dissatisfaction and disordered eating, not eating disorders. It's something that never fails to piss me off and get me spluttering, this conflation of body dissatisfaction and eating disorders. Most people I know are dissatisfied with their bodies. As long as it doesn't really interfere with your quality of life, I don't consider it pathological. It would be great if people looked in the mirror and were reasonably satisfied with what they saw, but cringing at your reflection does NOT an eating disorder make.

The other thing that irritates me about this post is how it assumes that parents play a major role in determining whether a person will develop an eating disorder. If a child has an eating disorder, the feeling is that, ipso facto, they had bad parents. Family therapy, for me, resembled nothing more than a witch hunt. It was a harmful waste of time, health, and money.

Truth: every parent is flawed.
Truth: some people with EDs have bad parents.
Truth: some people with EDs have good parents.
Truth: an ED tells you nothing about the quality of the sufferers parents.

It's nonsense, utter nonsense, to assume that a parent can single-handedly cause their child's eating disorder. Dr. Julie O'Toole of the Kartini Clinic has remarked that she has treated children whose parents DID try to give them anorexia. Their parents were suffering from Munchausen's by proxy. When the children were hospitalized, they resumed eating normally (well, as normally as one would expect for a starving child). They didn't have eating disorders. And their parents were actively trying to give their child anorexia.

Part of me cringes to see information like this still published (and shared on Facebook and Twitter, mind you, by MEDA, a national eating disorders association) in this day and age. But I'd rather see it published and brought into the light, rather than have it fester below the surface. Have it be the mindset that everyone has but no one is willing to admit to.

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The media needs to do its homework

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.

The problem with regularly perusing media coverage of eating disorders is that I am left wanting to stab out my own eyeballs in frustration and despair.

Cases in point:

Anorexia and bulimia are "dramatically" on the rise.

From a story in The Independent about a psychologist who will be speaking about bringing up adolescent girls.

Anorexia and bulimia are also dramatically on the increase: official figures for hospital admissions released last October pinpointed a 16 per cent rise in hospital admissions for eating disorders, and showed that one in every 10 of these admissions was a 15-year-old girl.

"There's plenty to be concerned about," Biddulph says. "Everyone who has a teenage daughter right now sees this, in their child and among their child's friends." The people they blame, he says, are the advertising industry and the media. "They are driving girls' sensibilities and making them miserable. The corporate world has identified them as a new market for products, and is preying on them." 

The article also talked about the "epidemic" of self-harm in the same population. Although I can't talk as much about self-harm prevalence, I can tell you that the interpretation of the official figures for hospital admissions tell us nothing more than that there was an increase in hospital admissions.

Here's what it doesn't mean:
  • There's an increase in the number of cases of eating disorders. Nope. Overall number of cases could have remained the same or even gone down. We don't know, truthfully. It could be that the cases are more severe, or that people are actually being hospitalized more frequently. It doesn't indicate how many ED cases there are that don't actually end up in the hospital.
  • An increase in hospitalization is a terrible thing. If more people being in the hospital means that more people are getting the care that they need, then this is a good thing. 
  • The world has it out for 15-year-old girls. Considering that peak onset for anorexia is puberty (and, at least in the UK, anorexia is the ED that is most frequently hospitalized), it's not surprising that a high number of hospitalized people are aged 15. Neither surprising, nor shocking, if the reporter had done her background research. 
  • There is an epidemic of eating disorders. To get really technical, an epidemic occurs "when new cases of a certain disease, in a given human population, and during a given period, substantially exceed what is expected based on recent experience." (Thanks, Wikipedia). Here's the rub: we don't have any data on the current number of new or existing EDs in the community, so we absolutely CANNOT accurately say if there are more cases than we would expect. Because we don't know how many cases to expect. It's all smoke and mirrors to say there's an epidemic. As far as we know, there's not.
When all else fails, blame the patient.

The results of a coroner's inquest into the death of a young woman from anorexia were reported, and here is what the medical examiner concluded:

Issuing a narrative verdict, Mr Hinchliff said: “She never fully complied with the treatment regime which had a major impact on her physical health and caused her death.”

Because, yes, it was the patient's fault she died, wasn't it?

It wasn't that she didn't comply, it was that she couldn't comply. When you are underweight and malnourished and frightened, facing the thing that scares you more than anything (food) six times a day is often more than a person can tolerate. Most of the time, ED patients do want to get well, they just can't handle the fear and anxiety. The disorder, then, becomes preferable.

The problem is that too many of the organizations that pay for ED treatment (whether it's insurance companies, the NHS, whatever) see weight restoration as the "cure" for anorexia. Nutritional rehabilitation is crucial and needs to happen for recovery, but just because a patient has gained weight doesn't mean that their eating disorder is gone. So people relapse, again and again and again, and everyone barks at them that they can't be helped.

This behavior isn't a choice. We need to stop expecting compliance from ED patients in the beginning of recovery. Treatment providers need to comply with the patient's abilities at his/her particular stage of recovery. That's where compliance needs to happen. It's not--and can't be--the patient's job.

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Treating co-occurring EDs and OCD

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.

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.

Holiday Survival, ED Bites Style

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:


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:

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The Sneaky Self-Hate Spiral

{{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.

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The seductive allure of the "nice" therapist

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.

HuffPost Live on Pro-Ana

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.}}

Trying to accept change

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.

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Remember the denominator

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.

Back to Blogging

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.

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ED Bites on HuffPost Live

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!


{{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!}}

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Anorexia from the outside in

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?

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Recovery A-Z

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.

What letter resonates most with you?

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About Me

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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Have any questions or comments about this blog? Feel free to email me at carrie@edbites.com

nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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