Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts

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."

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.

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.

What the ED community needs...

...is a page like this:

Why Schizophrenia Patients Are Difficult to Treat

It explains the issues in a clear, non-blaming, but easy-to-understand format. For many of these (with the potential exception of homelessness as a major issue for many ED patients), replace "schizophrenia" with "eating disorder" and you are probably pretty correct.

Certainly some things I would include:

Chronic ED sufferers often lack social supports that improve the likelihood of recovery.


An ED sufferer often lacks insight into the seriousness of their condition, which makes it difficult to engage in treatment.


EDs can be egosyntonic, which means that the person likes having their disorder. It's hard to work on getting rid of something you like.


Addictions and other co-morbid conditions can complicate ED treatment.


Our culture often praises ED symptoms and normalizes food and weight obsessions.


Insurance and/or national health systems don't provide adequate care.


Now it's your turn: is there anything else that you think makes ED treatment difficult? Share your thoughts in the comments section!

When therapy has side effects

It seems odd, doesn't it.  Medication has side effects--lots of them, in fact.  You can hear them rattled off in the same droning-yet-chipper voice in every pharmaceutical commercial on the air.  But therapy?  How can therapy have side effects?

Time Magazine had a follow-up to a story about a family in Michigan who used a controversial therapy to help treat their autistic children.  And that's when everything unraveled.  The story itself is sad and even frightening, but that's not the point of the blog.  What struck me was a paragraph at the very end:

We don't often consider the "side effects" of nondrug therapies. But the Free Press series shows just how harmful it can be to buy into a technique or therapy that offers nothing but hope. Many things that help can also harm, which is why we need sound science before any new technique is widely adopted — let alone used as evidence in custody or criminal cases.

It struck me that some ED therapies are the same way: they offer hope, perhaps, but no solid results to back up their efficacy.  And that any treatment can have side effects, even if it's not in pill form. 

Eating can be extremely anxiety-provoking for those with EDs, and that anxiety can be expressed in panic attacks, defiance, self-harm, temper tantrums, and more.  But eating can also be thought of as "therapy" for eating disorders, as a type of exposure and response prevention.  The anxiety is a side effect, and sufferers and families should be warned and prepared for this.

The autism story is also a case study in the fact that therapy can, in fact, actually be harmful to patients and families.  Recently, Becky Henry wrote about how parent-blaming in traditional eating disorder treatment tore her family apart. I know lots of examples of lives stunted or lost, of families wrecked because of ineffective and inappropriate treatment.  Going to therapy isn't something we can think, "Well, it can't hurt, can it?"

Actually, yes. It can. 

Therapists and families need to do their homework before just signing up for weekly psychotherapy to make sure that the therapy's benefits outweigh any potential side effects, and that there's good evidence to show that it will help rather than harm.

Stop the blame game

Last month, I wrote about the death of anti-anorexia activist Isabelle Caro. This morning, I learned that her mother Marie had committed suicide over the death of her child. Grief, guilt, and despair are painful, if normal, responses to loss.  I'm not faulting her mother for these seemingly intolerable feelings.  What I am wondering is how our habit of subtly blaming the parents for their child's eating disorder contributed to Marie's death.

In basically all of the news stories on Isabelle's death, there were comments about her mother, who was portrayed as a sort of Cruella de Ville of anorexigenic mothers.  An AOL story today said that:

Isabelle often spoke about her mother's phobia about Isabelle growing up and gaining weight, as well as her mother's depression. She had a lonely, difficult childhood as a result and had been anorexic since the age of 13. She wrote a 2008 memoir titled "The Little Girl Who Didn't Want to Get Fat."
This story also noted that Marie was especially devastated after a particularly critical article was posted about her in the wake of Isabelle's death.

Was Marie a perfect mother? Nope.
Did she cause her daughter's eating disorder? Nope.

A susceptibility to anorexia was part of Marie's genetic legacy that she bequeathed to Isabelle. Did she comment on her daughter's weight and size? I don't know. Even if she did, that couldn't cause Isabelle's anorexia.

Writes Dr. Julie O'Toole of the Kartini Clinic in a comment on her blog:
Even the most neurotic, dysfunctional, abusive parenting will not cause AN, much less what you have described above. AN is a brain disorder. Such parenting might, however, cause severe disordered eating, a neurotic obsession with appearance, or misplaced values.
In my years of practice I have had two mothers who actively tried to give their daughters anorexia nervosa. Why? Because they were mentally ill themselves. It is called Munchausen-by-proxy, and of course it didn't work. You can't give someone anorexia nervosa, even if you want to, and certainly not inadvertently.
It is likely that Marie was never told she could help her daughter recover, imperfections and all.  She clearly loved her daughter.  And if Marie herself had a subclinical eating disorder (I have no evidence that she did), it could have contributed to her alleged fears of Isabelle's gaining weight.

I remember discussing contributing factors with my mom in therapy.  At first, I believed that all of the unhelpful things she did were a direct cause of my eating disorder.  Anorexia was a rebellion!  A way of getting back!  A way of control!  Now I realize that these unhelpful things were a) inadvertent (how was she to know that getting good grades could be a bad omen?) and b) totally unrelated to my eating disorder.

Marie's death shows that the blame game is deadly--not just for sufferers, but also for loved ones.

Damaged by anorexia

I have seen this ad a number of times on my Facebook page, and it took me a while to figure out exactly why it bugged me.


In some sense, it was true.  I had been damaged by anorexia, yet I really get squeamish about thinking of myself that way.  I don't like thinking of myself as "damaged."  My illness has changed many aspects of myself--some for the better, some not so much.  But as much as anorexia may have altered me, it hasn't damaged who I am.

Yes, anorexia has caused a whole host of damages in my life.  The physical ones are a good place to start; my bone density has improved, but it's still sub-par.  I tend to be a lot more hesitant, wary, and cynical than I was before.  I'm more easily hurt.  These are some of the damages that have been done.

But I don't think of myself as "damaged goods."  I'm battered, bruised, and scarred, but hell--who isn't?  It's called parts of life.  I have way more scars than I'd like to have, and some very interesting stories that probably shouldn't be shared with polite company.  What that means is that I've survived some pretty heady stuff, had some very close calls, and (hopefully) learned my lesson.

It doesn't mean I am damaged.

I damage my car in a fender-bender.  I damage my iPod when I drop it.  I can hurt, harm, wound, and maim other people.  But that doesn't make them damaged.  It makes them victims of my temper and pettiness.  My bones are a victim of my anorexia. 

I suppose that seeing myself as "damaged" would mean incorporating that damage into who I am as a person.  My eating disorder has fundamentally changed me.  It's altered many aspects of myself.  And yet, I'm still Carrie.  Maybe a different Carrie, and older, wiser, and more battered Carrie, but I'm still me.  If anorexia damaged me, then it seems like I'm permanently messed up.  It's one thing to try and fix a damaged car--or even, say, damaged skin and nails.  It's quite another to try and fix a damaged person.

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Negotiations

One of my readers, Renee, asked me this question:

I am just wondering what keeps you from trying to negotiate about your weight. I don't want to go back to where I used to be, scrawny and starving and cold, but there is about a 10 pound difference between where "they" want me to be and where I'd like to be. And I am finding it harder to keep on those last 10. I keep telling myself that this time will be different, I won't lose any more than 10. I am not stupid, I know this is all ED talking. But still, lately it's all I can hear. How do you stay so resolute, even though you feel "fat"?


It's a really good question, so i thought I would answer the question here.

And my honest answer is this: I still haven't stopped negotiating.  Seriously.  At my last session with TNT, I raged for more than a little while about how I wanted to lose weight, that I didn't need these extra pounds, blah blah blah.  And TNT said, basically, that losing weight was not an option, that maybe my weight would go down, maybe it wouldn't, but I wasn't to influence the process.

Here's the thing: It's not your job to stop negotiating.  Of course, yes, acceptance of a healthy weight comes with recovery.  Yes, one of the goals of recovery is to learn to fight these thoughts internally and squash or ignore them.  All of that is true.

It is your treatment team's job to stand firm in the face of your anxiety.  Your ultimate goal is to manage your anxiety about weight and weight gain.  But don't confuse your ultimate goal with staying healthy in the meantime.

A brief metaphor, perhaps.  The ultimate goal for a young kid would be to learn how to cross the street by herself.  But when they're two years old, it's the job of the adult to hold their hand and take them across the street.  As they get older, you teach her (slowly) how to get back and forth across the street as you walk next to them, as you watch, across a slow street, and finally across a busy street (I think it's fairly safe to assume she'll pick up jaywalking on her own).

You're the little girl, your treatment team is the grown-up.  A two-year-old will almost certainly insist that she can cross the street by herself, that she knows best.  There's no point in arguing with her, because she really truly believes she's fine.  That's just what two-year-olds do.

Your eating disorder is making you anxious about your weight.  Of course you're going to try and decrease your anxiety--it's normal.  It makes sense.  Yes, the anxiety does get better, but it can last for a really long time, just like it takes a long time to learn how to dash across a busy intersection.

I'm sure my therapist-readers will be thrilled to hear that I'm advocating being a little argumentative and pugnacious about this.  But by talking about it and being forthcoming and honest, it can help you learn how to better cope with your feelings and anxiety.

Oblivious to the dangers?

Laura's post yesterday on eye damage and eating disorders got me thinking.  When I read articles about the health dangers of eating disorders, I almost have to laugh.  Not because it's funny, but because of the tone of many of these articles, as if these straight-laced doctors can knock some sense into us silly ED patients, then the problem would be over.

Here's the thing: we are often well aware of the dangers.  This isn't that we don't think it won't happen to us, or we've got it under control or we're not that bad, because we do.  At least, I know I did.  I was in the ER numerous times for low potassium from purging and dehydration.  What did I do when I left the ER?  Purge.

Yes, there's a bit of a disconnect.  But in the moment, the dangers are irrelevant.  What I always sensed as far more dangerous than heart failure was what would happen if I didn't purge, if I did drink that glass of water, if I ate that plate of food.  Death was far-off.  The food was right there in front of me.

My ability to ignore the medical issues wasn't a sign of how much I valued thinness--I knew water didn't have calories, but I was tremendously afraid of consuming anything.  It added "weight" to my body, and that totally would freak me out.  I took pathology, physiology, biochemistry classes as an undergrad and grad student.  I knew exactly what was going on.  And yet my eating disorder raged, raged against the dying of the light.

Sometimes, over the very short term, minor health scares would shake me up enough to get me to rein in at least the more flagrant of my behaviors.  But these changes rarely lasted.  They did nothing to arrest my illness.

I do think psychoeducation on the dangers of EDs are important, as is learning to deal with a wrecked body.  I still blame myself for my crumbling bones, my uncertain digestive tract, my history of seizures.  I know that I had an illness.  I wasn't being stubborn or stupid or vain.  Yet the pervading medical culture holds that if only I wasn't so freaking dense, I wouldn't have damaged my body.

I need to take charge of my health from here on out.  I eat plenty of dairy and take a multi-vitamin.  I take calcium chews when I remember.  I keep my weight healthy and I take my Prozac every morning.  I am well, now.  Or at least more well than I was.  Rather than wasting time scolding people, help them stop their symptoms so they don't have to face the health risks.

Remember this: we're not stupid. We're scared.  There's a difference.

Insight and eating disorders

Earlier today, Laura wrote that insight and eating disorders might be overrated. In many senses, she has a point. Often as a patient, therapists and treatment providers would ask me why they thought I was going downhill but made no real move to stop me from going downhill. "What's really bothering you?" they would ask me. "I dunno," I would say. I felt guilty about slacking off on exercise, so I tried to make up for lost time. I felt I ate too much, so I started cutting back. "No, no," they responded. "What's underneath that?" "Um...I dunno." And my task for the next week would be to figure out what was really going on. That, and try to cut back on the exercise.

No kidding.

Often, I had insight--or at least enough insight to start parroting back to my treatment team what they wanted to hear so they would stop asking me such asinine questions. Insight wasn't really my problem. I knew I had issues with depression and anxiety and perfectionism that was a big part of my eating disorder. I could talk to you at length about obsessions and compulsions and neurobiology and all of that. Still, I remained afraid of eating and entrenched in my eating disorder.

No amount of insight would have gotten me better. I wavered between extreme denial and anosognosia (I'm fine, there's nothing wrong) and pretty good insight. But insight is as insight does. I didn't stop being afraid of food until I was forced to eat 5-6 times every day, and do it over and over and over again. I'm still wary around food. But I'm not terrified of it. That wasn't insight. That was eating.

My insight often frustrated me. I knew that starving and overexercising and purging were ruining my health and making me miserable. Yet I also knew that stopping would make me more miserable. I knew that my symptoms were helping me deal with unbearable anxiety and depression. And what of it? I knew all of this, and I had been taught that this knowledge should have been enough. It wasn't. That's where I often got frustrated and gave up.

I'm not anti-insight, though. I think developing insight is a very important part of the recovery process. I haven't found much use in finding insight into why my ED developed--I know that I used my symptoms to self-medicate for anxiety and depression, and that explanation is fine for me. I know others have found such insight very useful, and that's great. What I have found insight very useful for is relapse prevention.

Eventually, I came to realize that very stressful situations--exam time at school, applying for jobs, moving, family issues--were major ED triggers. My brain could only cope with so many stressful things at once. Since recovery was stressful (and, in my eyes, often stupid and therefore optional), it was the first thing to get jettisoned. Enter relapse, stage left. It took me a long time--remember, I have a very thick skull, osteoporosis be damned--to realize that in these times of stress, when I felt that therapy and eating were the last things I had time for, therapy and eating needed to be at the top of my list. (I'm still not very good at this, to be honest.)

Now, with TNT, I'm working on developing insight into the depth of my negative self-talk. I often don't realize that I'm engaging in such self-hatred because it's such a part of my inner monologue that I don't think about it. And then developing insight to see the subtle ways it plays into my ED thinking. If I usually think of myself as a lazy pig, then it's not a hard leap to see how restricting food (negating the "pig" bit) and increasing exercise (negating the "lazy" bit) might make me feel better.

Of course, feeling like a lazy pig doesn't mean I am a lazy pig. I understand how that applies in other people, but I don't have much insight into why that wouldn't apply to me.

So yes, insight. It is useful, and it can be a good goal. But it often isn't enough to get someone over the initial hump of moving towards recovery. For me, it took having no other choice than to eat. Others have found different ways and different motivations. Insight can be a part of that, too. But I have found insight more useful later, after my thinking had cleared a bit, when I can look back at the craziness and be more rational about what the hell I had been thinking.

Anniversary

Today is September 11th. If you live in the US, it's pretty hard to escape this fact. There are memorials and retrospectives and all manner of remembrances.

On September 11th, 2001, I had dropped out of college the week before, too weak to continue my studies. I was miserable, depressed, and hoping to die. My blood pressure was essentially non-existent. I was contemplating entering treatment, but too apathetic to really care. I was at my absolute lowest weight.

I remember wishing I was in those burning buildings and crashing planes because those people probably wanted to live. I remember wondering how many calories I would have burned if I had to run down from the 86th floor, or whether I would have just jumped. Just as the Twin Towers were collapsing, so was my life.

I entered treatment on the 14th. I was trying to decide between Renfrew and Remuda when all of this happened. Since I could easily drive to Philly, I wound up checking myself into the Renfrew Center.

For the first few years after 9/11, the anniversary brought a sense of despair because I had gained so much weight since then. I was no longer skeletal, no longer special, and my pain was no longer visible. I had failed at anorexia, but I hadn't succeeded at anything else, either.

The last few years have been more of a sense of horror, that so many years had passed, and I was still sick. That I couldn't figure out how to get better.

This morning, I looked at condos. And then went to therapy.

I still judge myself for gaining so much weight. I still feel I've failed at anorexia and haven't yet succeeded at anything else.

But mostly, I feel a sense of lingering sadness for all the time that has slipped through my fingers. Time I can't get back.

I wrote this poem three years ago, and I still think it's decent, so I'm pasting it here.

I remember

the jingle of the phone
my mom shaking me awake
"turn on the TV, you
won't believe what's happening."
buildings falling- a bad movie.
no. this is real.

I remember

the people running and the
sick knowledge that I was to weak
to run for my life.
the anorexia had taken over and was
killing me as much as a plane
slamming into a building.

I remember

the hollow falling falling
rush and buzz in my ears
from CNN and starvation.
lost in a cloud of smoke
created by my brain
staggering and brushing away ash.

I remember

the frantic trip to the doctor
where I lacked pulse and blood
pressure. stand up sit down.
wanting to give blood
like everybody else
but I had no blood to give.

I remember

wondering why I cared about
calories in celery when
people were dying alone apart.
wishing I could trade places
with those who had perished
because they deserved life
and I didn't.

I remember

nothing.
everything.

I remember

and I am alive. still.

posted under , | 9 Comments

Doctors, ignorance, and eating disorders

There was an interesting thread I found on a discussion board that was discussing why medical professionals were so obviously not clued in about eating disorders. There are issues of insurance companies (in the US) and national healthcare rules (in Canada, the UK, etc), but that's not exactly what I'm getting at. It's that most medical professionals just don't get it--even, occasionally, those that say they "specialize" in eating disorders.

I can think of several reasons this might be:

1. Ignorance. Some doctors really truly don't have a clue. The more dangerous (and common) situation is where the doctors think they have a clue, but they really don't. We can break this down even further: there are those medical professionals who have no idea that they're out of their league and there are those won't admit that they're out of their league.

It's interesting, because I really respect a doctor who can say "You know, this really isn't my area of expertise, but let me find someone who can help you better." I'm guessing it's hard for someone (a doctor in particular) to admit they don't know everything, but I can tell you that I respect you more because of it.

2. Powerlessness. Many things that GPs and PCPs are trained to treat basically involve telling a patient what to do or giving them some medicine, and then the problem is solved. Even when other chronic conditions aren't quite this straightforward, there's an obvious path to take. First you do A, then you try B, then C. So some doctors will do the old "have a sandwich" routine because it's the kind of thing that works with other illnesses.

But the problem with an eating disorder isn't actually eating the sandwich. It's getting yourself to eat (and digest) the sandwich. Not that EDs aren't frequently accompanied by GI issues, but I can guarantee you that most ED patients have thought about eating a sandwich. It's the fears of what might happen if I eat that sandwich that get most patients, and I don't think that's really understood.

The other thing that I don't think many doctors realize is that EDs really aren't like other illnesses. The reason why?

3. Wrong assumptions. When someone gets sick, they usually want to get better. The problem with eating disorders is two-fold: many patients don't recognize there is a problem. And when they do, there are often serious issues with the follow-through. Sometimes motivation fades. Sometimes you're just lying to get the hell out of the office. Sometimes the patient underestimates just how hard it's going to be. Or they don't grasp the depth of the problem ("My eating disorder really isn't that big of a deal.") Most medical professionals don't get this. They don't understand why someone would engage in ED symptoms. So they assume that you're ready and willing to stop--which isn't always the case.

4. They take the patient's lead. This isn't always a bad thing. I think it's good for doctors to take a patient's lead on interaction style, what types of treatments work best, that sort of thing. But when a patient really isn't all that distressed by something that is killing them, the doctors often figure that it must not be that serious.

(I've had this problem with depression simply because I'm not overly demonstrative of my emotions, and I have a very dark sense of humor anyway. So I can be severely depressed and making smart ass remarks...only I really do mean them.)

5. The media. Mostly when you see EDs in the media, you see the most extreme cases. So when someone comes into your office whose weight isn't as low as that chick on TV last night, or who doesn't binge and purge as frequently, it's much easier (though no less irresponsible and stupid) to write that patient off.

6. Over- and under-reliance on labs. Many people with eating disorders can be severely ill and still have normal labs. On the other hand, people can look rather healthy and have totally whacked out labs. But since their weight isn't really low, it can't be that bad. If their weight is low, but their labs are normal, then they're not that sick.

7. Over-reliance on weight. This one pretty much explains itself.

8. Obesity hysteria. When all the messages you hear are to make sure that your patients aren't too fat, you're probably not looking to see if some of them are too thin. A doctor frequently encourages someone's weight loss efforts because they're thinking "At last! Someone I don't have to lecture about Cheetohs!" Or they overlook weight loss in a growing child because they're not yet "underweight" even though the weight loss is dramatic, marked, and takes the person off their growth curve.

9. They just don't want to deal with it. I'll be the first to admit that I'm probably not the easiest patient to have, especially when I was ill. I'd skip appointments or show up and deliberately blow off your advice. I wasn't aware that I had a problem, and then a crisis would arise and all hell would break loose. I don't envy my doctors and therapists, which is one of the most obvious reason why I don't want to be a doctor/therapist myself. But tough patients come with the territory. It's part of the game, and it's someone's life that you're gambling with.

Why do you think so many medical professionals just don't get it? Share in the comments, but I ask that this not become a comparison to see who was the sickest. You don't need to say how many times a day your purged, or what your weight/BMI was. That's not the point. What I'm curious to see is what have your experiences taught you about why so many doctors are so clueless about eating disorders.

Treatment as training wheels

A week or so ago, I read a mother's thoughts on the ultimate goal of eating disorder treatment. I couldn't find the actual statement, but I remember most of what she said.


"The idea with treatment is to help our kids with recovery until they are strong enough to do it on their own."

The goal of treatment, then, is to help build up our own strength to face ED on our own. In the beginning, it's hard (for me, it was impossible) to do it on my own. At first, I needed someone to do it for me--or at least to insist that I kept on the proverbial recovery bike.

And just like how I learned to ride a bike, I didn't start out on my current mountain bike. I started out on a Big Wheels, and then a tricycle. When I turned five, my parents got me a kids' bike with training wheels. Let me tell you- it was a very slow transition from a bike with training wheels to a bike without. I had my parents take them off, and I crashed. So they went back on. Then I learned how to ride pretty aggressively (considering) with training wheels. I was so scared of crashing and failing again, that I resisted having my wheels taken off.

My second try didn't end up much better than my first try, in that I crashed into a mailbox. The difference is that I had enough skill and confidence to get back on the bike, and it was the start of a long love affair with cycling.

I've used this metaphor before to help explain the need to keep getting back on the "recovery bike" and that crashes/lapses aren't the end of recovery. That's not what I want to stress in this post. What I want to stress is the process: Big Wheels to tricycle to training wheels to kids' bike.

At each stage, I learned new skills and gained more independence. I didn't ride for miles on my Big Wheels- my parents or babysitter was with me at all times. I'm guessing I wanted to go off on my own, but a three-year-old just isn't ready, no matter how ready she might have been at age 8. Just as I was impatient with my difficulties in transitioning from training wheels to a "regular" bike, I have been impatient with my difficulties in transitioning to greater independence in recovery. I felt like I was "behind" all of my friends in losing my training wheels, but the fact remained that I was terrified to go without my supports. I am 30 and just starting out in my career. I feel so much "behind" my friends who have steady jobs, are married and have kids (although I don't really have a burning urge to have children. I prefer the four-legged and furry type of children).

Looking back, I honestly don't think I was ready to leave my training wheels behind any before I actually did at the age of 8. Blame it on anxiety, blame it on my inborn clumsiness. The exact factors don't really matter. In the end, it didn't really inhibit my ultimate cycling skill.

Recovery is a process, too. Time is a part of that- time and maturity and effort. But there's also the matter of acquiring skills and gaining more independence. There's the issue of having people slowly step back as they gain confidence in my own ability. It's a matter of pushing my limits at times and holding back at others. More than that, it's a matter of learning when to push my limits and when to hold back.

Training wheels aren't the end goal, nor is treatment. It's a matter of getting support and help until you can do it on your own.

Image via Martha2Mary

The myth of motivation

Such was the title of the talk given at the 2010 International Conference on Eating Disorders by British clinician Glenn Waller. Dr. Waller had a fascinating talk and, even when I didn't agree with him, I always thought he had a really good point.

In his talk, Dr. Waller looked at the difficult issue of patient motivation in eating disorders. It's a thorny and fascinating issue to many in the field because people with eating disorders often struggle with staying motivated for treatment. This is inherent to the nature of eating disorders: the denial of a problem (or the inability to see that there is a problem). It's one of the reasons eating disorders are so damned hard to treat.

When my illness first started picking up speed in college, I seriously had no clue that there was anything wrong. I was exercising more! I was losing weight! I felt great! What could be wrong? How could this be an illness? Easy: when you're not eating because you're scared of food, and you're health is starting to suffer. Ultimately, the downsides of an eating disorder become more apparent, and the idea is for a therapist to use these downsides to help patients make behavioral change.

The problem is that motivation is often, as Dr. Waller calls it, a manifesto statement: it's what we want to do, rather than what we intend to do (or are capable of doing). He compared these motivation-oriented statements to campaign promises--they don't really mean much until they're followed by action. This follow-through is where people with eating disorders really struggle, much like politicians.

Dr. Waller's response to this was rather eye-opening. He told therapists to stop being a part of the problem in maintaining poor motivation for change by buying into the motivation manifesto. By doing this, the therapist is trusting the anorexia, not the patient. "The anorexia can only be trusted to try to survive," Dr. Waller said, and motivation to attend/be in treatment doesn't equal motivation to change.

The main factor for me was anxiety and fear about changing my behaviors. I was often tired of the eating disorder but unable to push through the anxiety that was keeping my ritualistic behaviors in place. Thus the status quo remained in place. My other issue was that this fear was coupled by my minimizing the issues that my AN behaviors created. They weren't that bad, I could handle it, most people were on a diet- how was my life different? So how could I be motivated to work on a problem that I often wasn't even sure I had?

Researchers often talk about issues related to patient drop-out and premature treatment termination in people with eating disorders. What astounds me is not so much how many people drop out but how and why so many people stick with it. Dr. Waller didn't really address the issue of outside support, and I wish he would have. I found that I couldn't conquer my ED without someone temporarily stepping in and helping me start eating and gaining weight. I needed to have no other option but recovery--and then I was able to slowly start stepping up to the (dinner) plate and taking charge of my recovery.

The issue of motivation is still very relevant to me, even though I'm rather far along in recovery. Dr. Waller said that motivation work needs to continue throughout therapy as a person can be motivated to address certain issues and not others. Furthermore, motivation can wane or disappear entirely, so it's not something that can be addressed in the first session and then checked off.

There were lots of other bits of Dr. Waller's talk that I didn't agree with, such as his belief that patients who don't change are choosing to stay ill. It often looks like that, but the situation is more complicated. Many times, it wasn't as much that I was choosing to stay ill as much as it was that I didn't have adequate support to change. Yet I'm glad Dr. Waller addressed the issue of motivation, and how therapists can better help people move towards ongoing recovery.

The Half-Baked Cake

When I was at the Congressional Briefing following the EDC Lobby Day this past Tuesday, I heard the clinical director of the Renfrew Center in Bethesda, MD speak. Mainly she spoke about how managed care has dramatically changed the treatment of eating disorders--and not for the better. One of her comments really hit home with me, when she said (approximately) the following:

Normally, you look in a cookbook for how long to bake a cake, and the recipe says to bake at 350 degrees for an hour. Managed care operates under the premises that you can make the cake at 500 degrees for 20 minutes and still have a finished cake. The irony is that often the cake looks done on the outside, but the inside is still completely raw. And if you let the cake sit for any length of time, the uncooked interior causes the whole cake to collapse.

The parallels to eating disorders are obvious: as soon as you start to "look" or outwardly seem better (i.e., the outside of the cake looks baked), the heat is turned off, the support is removed, and the whole thing collapses because it can't yet support itself. The analogy transcends issues related to managed care and really has to do with how we view eating disorders.

We need to start seeing the initial phase of weight restoration and normalization of eating behaviors similar to detox from addictions--it's a necessary first step but far far from the last. Furthermore, intensive, ongoing support is still needed after detox and weight restoration so that brain healing can take place and the person can learn how to overcome their tendency towards substance abuse or eating disorders.

Although the Renfrew director and I differ on why care needs to be continued after initial weight restoration (for her, it's the need to address the root cause of the eating disorder, which I think is mostly bollocks; for me, it's the need to allow ongoing brain healing and begin to learn and use better skills to deal with life), I do agree with her on the priority of weight restoration and the need for intensive support long after you start to look "better."

Maintaining a healthy weight is still hard for me. I have made huge strides, yes, and the higher weight has (I think) really helped to start to cement some of my recovery in my brain. (I kind of wish it didn't, but there you have it.) But I still need a LOT of therapy to help me learn to turn off that knee-jerk response of lose weight-restrict-control-control-control that my brain seems to have when faced with basically any kind of stress. My perfectionism is alive and well--perhaps because I can't bury it exactly six feet under. And the body dysmorphia? Well, let's just say that my mom's suggestion of a soak in our jetted tub to recover from Lobby Day was nice but almost laughable because I close my eyes when I shower so I can avoid seeing myself. A bath is totally out of the question.

My cake isn't fully baked yet, no matter how good the outside looks. I don't blame people for getting impatient- heck, I'm getting impatient. But the cake needs to stay in the oven and my therapy and support need to remain in place until the cake is baked.

And then I'll probably have to frost the damn thing.

Finding Effective Treatment

Seeing as I have finally (!) found a new therapist in my new location (who also accepts my insurance and is only an hour drive away), who I meet with on Saturday, and there have been several good posts about finding a good therapist and effective treatment, I decided a blog post would be appropriate.

Dr. Sarah Ravin has a list of five questions to ask a potential therapist when seeking treatment:

In regards to your question, here are the five important questions (in my opinion) that one should ask a potential therapist when seeking treatment for a serious, long-standing eating disorder:

1.) In your opinion, what causes eating disorders?

(Make sure they have a science-based explanation that involves neurobiology, genetics, personality traits, and the role of malnutrition. It’s OK if she mentions societal pressures for thinness as triggers, so long as that’s not the ONLY thing she mentions.)

2.) Describe your philosophy of treatment for eating disorders.

(Make sure she emphasizes full nutrtion and weight restoration to ideal body weight (for AN) and nutritional stability / cessation of binge-purge behaviors (for BN) as the first step in treatment. Make sure she also emphasizes the acquisition of coping skills, learning to eat healthfully and independently, self-care, treatment of co-morbid conditions, and relapse prevention)

3.) Describe your training and experience in empirically-supported treatments.

(Make sure she has some training and/or experience with CBT, DBT, ACT or other third-wave behavior therapies, and/or Maudsley FBT).

4.) How many patients with eating disorders have you treated in the past three years? How many of these patients have fully recovered?

(Make sure she’s seen at least a few other people with EDs, and make sure that the majority of them are fully recovered (or at least well on their way to recovery).

5.) What is your opinion on the involvement of family members and significant others in the treatment of eating disorders?

(If she advocates parentectomies or exclusion of family members, or implies that families cause EDs, this is bad news. If she views family members as potential emotional or nutritional support for the patient, this is good news).
If there is one word in reading about a therapist's history and treatment philosophy that gives me the heebie-jeebies and automatically makes me click "NEXT!" is this: eclectic. I shudder just typing it. To me, eclectic says "I do whatever I feel like doing" or is kind of like commitment-phobia for the potential therapist. You're a professional- tell me what works and why. There's a difference between "eclectic" and "I have been trained in approaches A, B, and C and can help tailor therapy to you and your situation." I have found a combination of CBT, DBT, and FBT to be helpful at various stages in my recovery, so I'm not all-or-nothing about types of therapy. But eclectic? Ick.

The Cleveland Center for Eating Disorders blog "Living With Food" has this advice for seeking evidence-based treatment:

1.Remember that there are very few evidence-based treatments for eating disorders. If you are not receiving cognitive behavioral therapy, dialectical behavioral therapy, interpersonal therapy, or family based therapy, then the odds are very high that you are not getting evidence-based care.

2.Your primary care physician is likely to have experience with patients who have done different types of treatment in your community. Your primary care physician is therefore a critical resource.

3.When you are in a provider’s office and they are discussing care options with you, never hesitate to ask for all of the evidence behind what they are saying. At this point in time, all practitioners in eating disorder treatment should be able to back up what they are saying in a straightforward and understandable manner.

4.Finally, while doing research on treatment for eating disorders, the Internet, while helpful, may not provide definitive answers (and may be more confusing than anything). There are certain organizations that we feel are trustworthy. We highly recommend NEDA, AED, Maudsley Parents, ED Recovery, The Freed Foundation, Are you eating with your anorexic, The F-Word, NAMI, Life After Recovery, and FEAST as reliable organizations and blogs where you can learn about evidence-based care and communicate with other patients and families that may be struggling with an eating disorder.

Off course, point #2 assumes your PCP/GP isn't a total bonehead and doesn't blow off your concerns. Still, they should know something about community resources or have a referral to someone who isn't a total bonehead. When all else fails, go straight to point #4.

There are plenty of other barriers to finding quality ED care, not the least of which are: geography, therapist's availability, insurance coverage, wait lists, finances, you name it.

What criteria do you use when looking for a therapist (or what criteria would you use)? Do you have any words or phrases that are a therapist "turn off"?

Body fat- it's not a bad thing

A new study confirms previous research that a higher percent body fat is associated with better outcomes for anorexia, and that lower body fat percentages are associated with relapse (Bodell and Mayer, 2010). The research isn't exactly groundbreaking, nor is the science--it's a pretty straightforward statistical analysis--but the results bear repeating.

For most of my treatment, I've had clinicians low-ball my weight. They'd use some sort of plug-n-chug formula and tell me what I needed to weigh. Only twice was I asked what I weighed before the eating disorder during these "What should healthy Carrie weigh?" conversations. The second time, I lied because that is what people with eating disorders do when they are terrified of gaining weight and want to avoid it at all costs. Nothing egregiously inaccurate, but still.

One dietitian told me a weight that was about 20 pounds below my pre-AN weight. Another treatment center let me pick what weight I wanted to end up at (I pulled a random number out of the air because I knew I was being discharged in 24 hours and didn't want to jeopardize that). A different treatment center told me my target weight down to the half pound. Even as deeply entrenched in my illness as I was at that point, I found it ludicrous. If drinking a bottle of water can cause the difference between "too thin" and "too fat" or even healthy and not, then your standards are seriously whacked. Not one of them looked at body fat percentage. Not one of them looked at growth charts. Not one of these treatment experiences resulted in a lasting recovery.

I was all too happy to be told these very low target weights because that meant I could keep a bit of the eating disorder. But I also remember this tremendous sense of betrayal, that the people I had hired and was paying my hard-earned money (dude, I was a college student! I'm not paying $100 per 50-minute hour because I have a bunch of spare change laying around that I don't know what to do with!) didn't really have my best interests in mind. I don't think these people were deliberately malicious--they thought they were doing right by me--but they were wrongheaded and rather harmful. Because what I heard when I was told these low weights was that "See, I really was fat. There really was something wrong with my weight. I was right to stop eating and start exercising." If my weight was fine before anorexia, then why wasn't that my goal weight? I was very healthy and athletic and, the depression and anxiety notwithstanding, relatively happy. And if all of these professionals were telling me I would be just fine at X pounds, then why should I struggle through and get back to Y pounds?

I'm not saying that we should be checking percentage body fat every time someone walks in the door. Frankly, I don't want to know my body fat percentage as it's just one more number to obsess over. But it makes no sense to be afraid of it, either. To buy into the ED deception that having a normal, healthy amount of fat on your body is something to be afraid of. It's a tool to help people towards recovery. We know that shooting too low on weights can leave a person very vulnerable to relapse, so I can't quite figure out why we keep doing it.

Barriers to mental health care

"Health care reform" is a huge catchphrase in the US right now, causing an endless array of debate as to what the future of American health care will look like. Within the health care debate, improving access to care is one of the main goals. Access to care can be limited by any number of factors, such as geography (you live out in the sticks), time (treatment providers don't have evening/weekend hours), money (you can't pay for your treatment), and also stigma related to seeking care. For mental health issues in particular, stigma can play a large role in discouraging people to seek care.

Many people are loath to admit they have a mental health problem. And eating disorders in particular carry the stereotype of being a young, white female's disease. Furthermore, eating disorders are egosyntonic, which means sufferers are not likely to seek care on their own. A recent study from the International Journal of Eating Disorders titled "A Qualitative Study of Perceived Social Barriers to Care for Eating Disorders: Perspectives from Ethnically Diverse Health Care Consumers" examined specifically which factors prevented ED sufferers from seeking care (Becker et al, 2009).

The authors note that

Specifically, respondents perceived that social costs related to acknowledging an eating disorder had influenced them to avoid or postpone treatment or limit their disclosure of related symptoms...Respondents perceived that concerns or symptoms had been unrecognized, misinterpreted, or dismissed because of expectations about the presentation of an eating disorder or social norms relating to weight...Finally, additional impediments to accessing care included economic or health insurance constraints as well as suboptimal availability of specialty services.

Another recent study about barriers to care focused on mental health literacy and treatment-seeking for anxiety disorders, from the journal Depression and Anxiety, and was titled "Barriers to treatment seeking for anxiety disorders: initial data on the role of mental health literacy" (ME Coles and SL Coleman, 2009). Here, the problem was less focused on stigma to seeking care and more focused on a person's ability to recognize and label a set of symptoms as a potential mental health problem.

The statistics were not uplifting. Some disorders (such as OCD and social anxiety disorder) were more easily recognized than other anxiety disorders. From the paper's abstract:

Findings showed that social phobia and obsessive compulsive disorder (OCD) were associated with recognition rates that were generally high and similar to depression ( approximately 80%). In contrast, less than half of the respondents labeled panic disorder or generalized anxiety disorder (GAD) correctly. Symptoms of OCD were attributed to mental illness by approximately 50% of respondents, but such attributions were rare for the other anxiety disorders studied (<12%).

In terms of improving mental health care in the US, we not only need to improve access to care, but also help people recognize what mental health issues may look like, that these issues can affect anyone, and that there is no shame for having a problem and seeking appropriate help.

Food: problem and solution

I just noticed this little magnetic notepad that is hanging on the side of my computer. I remember picking it up several years ago at a NEDA conference because I needed to write something down when I was near the exhibit booths. So I picked up the notepad and ultimately stuck it to my computer when I got home. And there it has stayed. I neither thought about it or really used it since.

Today, however, I was on hold and found myself staring at this little notepad, which said:

Food is not the problem, therefore it can never be the solution.

I confess, I'm a little stymied by this. To say that food isn't the problem for someone with an eating disorder strikes me a vaguely ridiculous. Of course food is a problem- either you can't eat enough, or you can't stop eating. Food isn't necessarily at the root of an eating disorder, any more than being sad is at the root of depression. It's our attitude towards food, and our ability to consume and digest appropriate amounts of it that ultimately are the problem.

To some degree, I have found food to be the solution to my eating disorder. Eating is not a cure, not by a long shot. But re-learning how to eat and maintain a healthy body weight has been one of the big challenges of recovery. The rest of recovery--coping skills, emotions, therapy--doesn't mean a whole lot if you haven't addressed the eating part of the eating disorder.

I was always told that my eating disorder wasn't about the food. I'm realizing now that my eating disorder was about the food. It wasn't solely about the food, as a lot of my anorexia had to do with my anxiety and fears around food, as well as perfectionism, etc. Not that clinicians should focus on the food to the exclusion of everything else, but you have to start somewhere.

(On a side note, the other phrase from treatment that still makes me cringe is "fat is not a feeling." Fat is too a feeling--a physical feeling. It's not an emotion, but you can, in fact, feel fat.)

I understand that food (whether consuming it or restricting it or purging it) will never be a solution to emotional problems. I've learned that the hard way. But to say that food isn't a problem, period, and food isn't part of the solution seems a little ludicrous when it comes to eating disorders.

How do you interpret this notepad? What do you think?

posted under , | 17 Comments

Improving therapist interest in empirically supported treatments

There was a brief but interesting research article this past week on Interesting practitioners in training in empirically supported treatments, published in the Journal of Clinical Psychology. Despite a growing recognition of the importance of empirically supported treatments (otherwise known as evidence-based treatments), not all therapists are aware of these treatments or are willing and able to provide them. A good blog post from the Cleveland Center for Eating Disorders explains some of the reasons why.

Of course, all the training in the world isn't useful unless a therapist is interested in receiving that training. Speaking as someone with a research-oriented background, not a clinical one (nor even a psychological one), my first instinct would be to start by showing people the strength of the research base behind the treatment. What this paper found, however, is that most therapists responded more favorably to case studies rather than larger research studies.

Which, when you think about it, does make sense. Most therapists are more oriented towards people than they are towards large research studies (I'm the opposite, which helps explain why I'm not a therapist and never will be). This is neither good nor bad, it's just a general trend I've observed. Furthermore, case studies can provide more practical information in explaining how the therapy is carried out, how the patient responded, and what are some common pitfalls. This isn't to say that case studies should replace large research trials, just that they interest therapists more in empirically supported treatments.

For more information on empirically supported treatments, see both the Psychotherapy Brown Bag blog and this explanation from the American Psychological Association (they have information specifically on empirically supported treatments for eating disorders here).

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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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