...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!

As I have promised, I'm going to do a few posts on some of the things I learned while at the AED conference last weekend.

The best session I went to was called "Who's Who in the Brain?" and it looked at what neural systems malfunction in anorexia.  To try and summarize the talk would be ludicrous, especially since the best part was interactive.  Basically, session leaders Bryan Lask and Ken Nunn had us get into groups of 8 (since most of the participants were MDs or PhDs, there was a little bit of eye rolling at this suggestion) and we each took on a role of one of the neural systems profiled, from the nucleus accumbens (the pleasure center) to the prefrontal cortex (PFC, the "executive" or decision-making part of the brain).

We were given the task of trying to decide where to meet for dinner.  We each had to play the part of the brain part we were assigned (I was the basal ganglia, which is involved in movement/exercise, precision, and also malfunctions during OCD. I'm pretty tight with my basal ganglia...) in deciding where to meet for dinner.  As the basal ganglia, I needed to know exactly where and when to meet, like give me some GPS coordinates, people, and exactly how much money did we have to spend?  So perhaps a little neurotic, but I was bound and determined to get us there on time.

The other five group members also provided their feedback, and the insula carried all of our messages to the prefrontal cortex, who made the final decision.  We were going to meet at the hip Asian joint down the street at 6:45 pm for drinks and sushi. Ta-da! Decision made.

Then, we had to make the same decision in a malfunctioning anorexic brain.  As the basal ganglia, I couldn't find the "perfect" restaurant or the "perfect" entree or be sure that everyone else in the group would agree.  The prefontal cortex was also malfunctioning, and pretty much left the five brain parts to rule in anarchy.  The insula was simply missing in action and none of the brain parts could talk to anyone else.

Our decision?

Skip dinner.  All around the room, the groups returned with the same verdict: no dinner.  With a malfunctioning brain, the decision was just too complicated, and so the "brains" defaulted on not eating.

Our group decided we'd get tattoos instead (there was some sort of inside joke there--it was tremendously funny at the time, but I can't exactly remember why). Another group went to the gym.  Mostly, people retreated to their rooms and spent a socially isolated evening on their own.

Sound familiar?

Lask and Nunn referred to this conundrum--an endless shouting by the various parts of the brain while the prefrontal cortex merely shrugged its shoulders and the insula had long since left the building--as analysis paralysis.  Wikipedia defines it as:

over-analyzing (or over-thinking) a situation, so that a decision or action is never taken, in effect paralyzing the outcome. A decision can be treated as over-complicated, with too many detailed options, so that a choice is never made, rather than try something and change if a major problem arises. A person might be seeking the optimal or "perfect" solution upfront, and fear making any decision which could lead to erroneous results, when on the way to a better solution.

Figuring out where to go for dinner seems like a pretty simple decision.  It's not like figuring out where to move or whether to take that job or how much to invest in your 401(k).  It's just dinner.  Yet the decision making process, though it can happen lightning fast, is also very complicated.  If the brain can't share and process information--if the insula isn't working properly--the brain gets stuck on the simplest of decisions, like a scratched record or CD.

The insula is known to malfunction in anorexia.  Starvation reduces blood flow to the brain, which makes other areas of the brain malfunction as well.  Soon, the simplest questions cause paralysis and the brain defaults to a simple answer: no.  I already ate. I'm not hungry. I'm busy. No thanks. I'd rather not. No. No. No.

It's our way of avoiding analysis paralysis.  Our brains, Nunn said, are rather like Congress.  Lots of bickering, lots of going back and forth, and without strong leadership, nothing gets done. Actually, even with strong leadership, things don't always get done in Congress, but I digress.  Even if the insula alone isn't working properly, the entire brain is affected, and it gets stuck in analysis paralysis.

The solution is for other people to step in and act as the insula and prefrontal cortex of the person suffering from anorexia, whether it's parents, caregivers, friends, or therapists.  It's often too complicated to decide what to eat, and so it helps for someone else to do a bit of the decision making, sometimes in the form of making all food choices, or giving guidelines in others.  Eventually, the brain regains enough function to begin to take over those decisions, and being able to easily make decisions is a sign of recovery.

I'll plead guilty--I've thrown around the phrase "brain disorder" in my time, even here on this blog.

But what the hell does this term even MEAN?!?

Here's the problem: there's no consensus.  Not in the field of eating disorders, not in the field of psychiatry, not in mental health.  Obviously, the idea of "brain disorder" means that biology is involved, which, for this trained biochemist anyways, is pretty darn obvious.

In a recent email, my friend Sarah Ravin said this:

I conceptualize a brain disorder as a disease or disorder that originates in the brain and influences mood, thinking, learning, and/or behavior. So EDs, autism, bipolar disorder, OCD, Alzheimers, and most of the DSM would fall under this category.

To me, “brain disorder” does NOT mean:

• Environment does not play a role in its development
• Environment does not play a role in recovery
• It is 100% biologically based
• It can only be treated by physician or with a pill
• Psychological interventions won’t help
• The patient can’t do anything to influence the outcome

In fact, I don’t know of any physical disease or medical condition in which any of the above is true.

I think this is, bar none, the best explaination of what a "brain disorder" is that I have ever read.  I think that if professionals can be more clear about what they mean when they say "brain disorder" then people can start understanding and integrating biology into their picture of what eating disorders actually are.  Understanding the biology of EDs has actually left me far more hopeful than any other explanation.  No, biology doesn't mean that I'm hopelessly f*cked, but it does help me approach recovery from a more realistic standpoint.  Even if/when I resolve all of my ED issues, I will remain vulnerable to relapse.  That doesn't mean I will be tortured by AN thoughts, or even have them at all, but that it's also smart to be cautious.

I've written on my life as a "high functioning anorexic" before--indeed, for much of my eating disorder, I was almost certainly functional. I finished college and completed two master's degrees. Outside of a seven-month treatment stay and several brief hospitalizations, much of the past 8 years was spent living as an otherwise "normal" person.

See? My eating disorder really isn't that big of a deal!

The problem wasn't just that I peddled such drivel to friends, family, and therapists (I'm fine! I'm not that sick!), I also began to believe my own bullshit. If I wasn't that sick, then why would I need to worry about getting better? I had a full-time job, I was in school, I was just fine, DAMMIT.

The problem is that "high functioning" is a bit of a myth. How well you are functioning isn't always a measure of illness severity; sometimes it's a measure of how well you can hide just how awful things are. My heart was whacked, my digestion non-existent, my body shutting down, and yet I was maintaining a straight-A average in college. Several professors didn't understand how I could be leaving school "when I was doing so well!"

Many times, when exactly how bad the eating disorder, anxiety, and depression really were came out into the open, it usually wasn't because they were suddenly worse. Rather, things started to appear really bad because I began to lose my ability to compensate for my illness. I carefully constructed my life around my eating disorder so that I could protest with all wide-eyed innocence that everything was fine. Sure, I had no life outside of my job and the gym and the online calorie counting guides, but I got to work everyday. No one knew my dirty little secret that I had once been locked in the loony bin, that I had come perilously close to starving myself to death.

Blogger Meggy Wang writes:

Bipolar disorder* is considered a “severe mental illness,” however, and in order to protect myself from feeling like a nutcase, I still call myself high-functioning. As in, yeah, I started having hallucinations when I was a senior in college, but I also graduated with a 3.99 from Stanford.

But lately I wonder whether my own insistence on calling myself high-functioning is both a defense against self-stigma and a defense against perceived external stigma... To define myself as high-functioning, then, is my way of separating myself from what I do not want to be. By doing so, though, I suspect that I’m playing my own major role in stigmatizing mental illness, as people with mental illness get a bad enough rap without divisive factions within. I'm thinking about people of color stratifying via skin tone from dark to light. It's hard enough to be a member of a stigmatized group without having other members claiming to be "better," more "normal," more like the majority. Even if the majority is what I often wish I could be.

Obviously, our mental illness significantly affects our ability to function--if it didn't, we wouldn't have a mental illness. Certainly there are degrees to which a mental illness will affect our lives, and often an increase in illness severity corresponds to a decrease in functioning. Yet being high functioning doesn't indicate a lack of illness severity, either. It just means that you, like me, could compensate really well for the internal havoc of your mental disorder.

Those times when my life crumbled down around me, when I could no longer compensate for the madness and obsessions and compulsions, those were the times when I felt relief. Finally, I thought, I will get the help I need. I can stop hiding just how bad everything really is. Of course, the severity of the situation simultaneously humiliated me, which is why I didn't say anything in the first place.

In the end, we can be united by our common diagnoses and neuroses, or we can use that to split ourselves into a group of the "sick" and "not-sick." This isn't to say that we are our diagnoses, but that whether you're an anorexic sitting on a park bench or Park Avenue, you share the same struggles as me and so many others like me.

Although the research isn't that new, there was a wonderful write-up on Walt Kaye's brain imaging research in the Psychiatric Times (creatively titled Anorexia and Brain Imaging).

A short excerpt:

...insights into the ventral (limbic) and dorsal (cognitive) neural circuit dysfunction, perhaps related to altered serotonin and dopamine (DA) metabolism, may help explain why individuals with anorexia often report that dieting reduces their anxiety while eating increases it and why they worry about long-term consequences but seem impervious to immediate gratification and unable to live in the moment.

Many women diet in this culture, but relatively few (0.5%) have anorexia, Kaye told Psychiatric Times. “Why is that? Well, you pretty much have to have a certain temperament and personality in childhood to be vulnerable for . . . an eating disorder,” said Kaye. “Not everyone who develops anorexia has all these traits in childhood, but most have one or more of them,” he said. “These traits include harm avoidance, anxiety, behavioral inhibition, difficulty with set shifting [easily moving from one mental set to another], a tendency to focus on details rather than the big picture, and perfectionism.” Even after recovery, these personality and temperament traits persist, pointing to underlying neurobiological factors.

...Kaye said that evidence from imaging studies suggests that disturbances in the serotonergic system might contribute to vulnerability for restricted eating and behavioral inhibition as well as a bias toward anxiety, particularly excessive concern with consequences. Meanwhile, DA dysfunction, particularly in striatal circuits, may contribute to altered reward, decision making, stereotypic motor movements, and decreased food ingestion.

The article isn't simple--the magazine is aimed at psychiatrists, not otherwise clueless neuroscience geeks like yours truly--but it's written very clearly, and Google helped me figure out what terms I didn't know. If you ever want a good handout on up-to-date information on anorexia for medical professionals, this would be a good one to print and keep on hand.

I was watching the second episode of "This Emotional Life" tonight, and in the middle of one of the segments, the narrator, Daniel Gilbert, said something that I wish everyone could have heard. He said:

Mental illness is the same as a physical illness, except a mental illness causes psychological symptoms.

That's what I wish more people understood, that the "illness" part is very real, and so is the suffering. It's not a matter of willpower, or a character flaw, or a sign that I just need Jesus. I'm not making this up, and I can't just snap out of it. Trust me. I've tried. Having people understand this doesn't make the suffering from anxiety, depression, or anorexia any smaller, but it makes it just a little bit easier for me to get on with my life and getting better.

I ran across a fantastic article in The Atlantic, titled The Science of Success, which examines the genetics of mental illness. Writes David Dobbs:

Of special interest to the team was a new interpretation of one of the most important and influential ideas in recent psychiatric and personality research: that certain variants of key behavioral genes (most of which affect either brain development or the processing of the brain’s chemical messengers) make people more vulnerable to certain mood, psychiatric, or personality disorders. Bolstered over the past 15 years by numerous studies, this hypothesis, often called the “stress diathesis” or “genetic vulnerability” model, has come to saturate psychiatry and behavioral science. During that time, researchers have identified a dozen-odd gene variants that can increase a person’s susceptibility to depression, anxiety, attention-deficit hyperactivity disorder, heightened risk-taking, and antisocial, sociopathic, or violent behaviors, and other problems—if, and only if, the person carrying the variant suffers a traumatic or stressful childhood or faces particularly trying experiences later in life.

This vulnerability hypothesis, as we can call it, has already changed our conception of many psychic and behavioral problems. It casts them as products not of nature or nurture but of complex “gene-environment interactions.” Your genes don’t doom you to these disorders. But if you have “bad” versions of certain genes and life treats you ill, you’re more prone to them.

Recently, however, an alternate hypothesis has emerged from this one and is turning it inside out. This new model suggests that it’s a mistake to understand these “risk” genes only as liabilities. Yes, this new thinking goes, these bad genes can create dysfunction in unfavorable contexts—but they can also enhance function in favorable contexts. The genetic sensitivities to negative experience that the vulnerability hypothesis has identified, it follows, are just the downside of a bigger phenomenon: a heightened genetic sensitivity to all experience.

(emphasis mine)

Dobbs explains that there are two differen types of children: "dandelions," those children with more reslient genes who will grow no matter where they are planted, and "orchids," those children who will wilt if neglected but will bloom magnificently in the right greenhouse.

"One lesson that geneticists know," writes evolutionary biologist jerry Coyne, "is that 'genetic' does not mean 'unchangeable.' "

Indeed it doesn't.

I stumbled across an interesting article in The Behavior Therapist, published by the Association for Behavioral and Cognitive Therapies, titled On the Brain Disease Model of Mental Disorders, by Brett Deacon and James Lickel. The "brain disease" model holds that mental illnesses are biologically-based and are the result of underlying alterations in neurochemistry. I have used the terms somewhat interchangeably, and probably will continue to do so, although the semantics of the two terms are different.

In this article, the authors contend that the brain disease model has some drawbacks, namely:

We are concerned that the enthusiastic promotion of the brain disease model by NIMH and other prominent sources (e.g., National Alliance on Mental Illness, the pharmaceutical industry) has far outstripped the available scientific data and may actually be increasing the stigma associated with mental disorders.

For starters, they say, there are no diagnostic tests for mental illnesses based on abnormal brain circuitry. Secondly, although the acknowledgement that a mental illness is a brain disease decreases how much the sufferer blames him/herself, it also tends to make them view their situation as more hopeless. Furthermore, increases in our biological knowledge and understanding of mental illness have not yet resulted in better biological interventions.

...the intervening decades have not witnessed the expected advances in biological technology for diagnosing, preventing, treating, or eliminating common problems like mood and anxiety disorders.

...the notion that “mental disorders are brain disorders” represents an eliminative reductionistic perspective in which higher-level psychological processes such as thoughts, emotions, and behaviors are entirely explained by their putative biological causes. From this point of view, an association between biological variables and mental disorder symptoms may be interpreted as demonstrating the disease process that caused the disorder. This perspective leaves little room for the possibilities that apparent biological abnormalities might be the result of a mental disorder, a consequence of chronic psychotropic medication use (Leo & Cohen, 2003), confounded by affect-induced physiological changes during the biological test (Whiteside, Port, Deacon, & Abramowitz, 2006), or reflect a vulnerability for developing a mental disorder without directly causing it.

The authors do raise some important points, but many of the issues they raise have less to do with the brain disease model and more to do with our understanding of biology in general and the brain in particular.

Let's start by comparing neuroscience to physics. We've known from the time of Newton the forces that cause a planet to orbit a star, or a moon to orbit a planet. These rules have been the same for hundreds of years, rules that even today guide our ability to launch a satellite that enables me to Twitter on my Blackberry. Newton could have told us how to do it, but he wouldn't have been able to launch the satellite. Why? Technical difficulties. He simply didn't have the equipment and probably couldn't imagine the equipment. But that doesn't mean that his theories of gravity were wrong or that we were never going to send satellites into space.

Something similar is going on here. Just because we can't yet diagnose mental illness based on abnormalities in brain functioning doesn't mean that this differences aren't there. It means we can't measure them. Maybe we never will be able to measure them. But the evidence is pretty consistent in linking underlying neurochemistry to mental illness. The authors are right in pointing out that we don't know everything about these neural differences, and whether they are diagnostic, indicate increased risk, or are a scar from previous incidences of this mental illness. It's likely that a single brain scan looking at one single thing isn't going to be diagnostic of anything. Rarely does a single factor diagnose any disease, mental or otherwise. Usually, it's a combination of factors that lead us towards disease.

As much as we like to think of there being a "gene for" depression, bipolar disorder, eating disorders, schizophrenia, diabetes, obesity, cancer, that's just not how DNA works. It's not an on/off switch; rather, genetic risks function a lot like a dimmer switch. And determining how bright that light is also needs to account for the ambient light in the room, those environmental factors that interact with genes to help increase or decrease risk. If the room is dark, even a dim light will be obvious. At high noon, however, you might not even notice that the bulb is on.

We accept (however unwillingly) these biological complexities in illnesses like cancer and diabetes. There's a general understanding and acceptance that there will never be a "diabetes gene," that our treatments have improved over the past several decades, but we're still a long way from anything that could be called a "cure." That doesn't change the fact that diabetes is an endocrine disorder.

The other main issues that Deacon and Lickel raise has to do with an increase in the amount of hopelessness one feels when they are told that their illness is the result of biology. And perhaps the earth felt hopeless after they told it that it was no longer the center of the universe, but that doesn't make it any less true. Understanding science is a major issue in America, so it's no surprise that the more science-based explanations of mental illness have resulted in some misconceptions. Maybe it's because I have training as a biologist, but I found the knowledge that my eating disorder was the result of biology to be tremendously hopeful. I had plenty of insight, but I still wasn't getting better. I wasn't "choosing" recovery somehow. I thought my difficulties in recovery were my fault, rather than the result of a pernicious illness.

There is tremendous freedom in accepting the fact that, as far as ED biology goes, I'm f*cked. It's true. Dieting or even skipping a meal ends very, very badly for me. And if we're looking for treatment of mental illness to fundamentally change who we are as people, we're all f*cked. We can't do that. We don't know how to do that, and there's no reason that we should.

From a biological standpoint, my brain is high anxiety. I worry. A lot. I get depressed. A lot. Excessive exercise and starvation are strangely rewarding. There isn't much I can do about this. In fact, I've stopped trying. What I am doing, however, is learning how to live with my biology in the best way I know how.

Last week, a fantastic special on mental illness aired on PBS called Minds on the Edge that addresses many of the legal and ethical issues that people with mental illness (and their loved ones!) will face.

Although the whole show was fantastic (and is worth watching), it was the hypothetical story of "Olivia" that really caught my attention. While a college student, Olivia begins developing symptoms of mania, causing her friends and professors to worry. Olivia, however, thinks she is just fine, dammit, and wonders what the fuss is about. Her parents come for a visit and find her mental and physical state so disturbing that they bring her to the emergency room.

Except that's not the end of the tragedy, as it might be with a broken leg; it's just the beginning.

I couldn't embed the videos on the "Olivia" segment, but you can watch it yourself here:

Part One
Part Two
Part Three

Although this segment doesn't really mention eating disorders, I think it raises many of the issues that our medical and legal system fail to address in illnesses that are anosognostic. We are very used to assuming that people are aware and conscious of their own choices--and most of the time, we're right. But when we frame life-threatening brain diseases as just a series of tragic but stupid decisions, we're ruining lives.

There is no easy fix--one of the panel participants in this program called the mental health system the definition of insanity (though no doubt insurance companies would consider this a pre-existing condition). But we can't start with the fix until we start reframing how we think about all mental illness, eating disorders included. These illnesses aren't about unresolved conflicts or boundary violations, and although the behaviors frequently make sense to the sufferer and do have an adaptive function, they're not just a poor coping mechanism.

Be sure to explore the rest of the Minds on the Edge website and share your thoughts in the comments. There are also audio and transcripts available if you want to listen on your iPod or if you'd rather read it.

I was out to coffee with two of my friends from DC this morning (L was visiting me, C--my very first friend EVER--was home for the weekend, so all us DC peeps were together in the Midwest) and we got to discussing health care reform. Part of it was shop talk of people who live in DC, and part of it was related to C's job at a non-profit advocacy group that works on health care reform. Although I didn't talk specifically about how this would relate to eating disorders--both L and C know about my history and current relapse--I did think about it.

A little while ago, I read a new paper from the International Journal of Eating Disorders titled "Service users' views of eating disorder services: An international comparison" that really seemed to drive home many of the conundrums I think about with respect to both health care reform and eating disorders. In this debate, the UK's National Health Service is either held up as a good example or how Satan would provide health care, depending on your political persuasion. It is, of course, more nuanced than that, especially in terms of treating eating disorders.

The study concluded the following:

Both samples identified the following as essential aspects of care: good therapeutic relationship, holistic approach, individual psychotherapy/counseling, specialized treatment, client-centered care, and support. In the US sample, the main concerns involved lack of financial accessibility to services and problems with insurance coverage. In the UK sample, lack of and inequity of availability of services were highlighted and three main barriers to accessing care were identified.US and UK service users' views suggest that neither country provides early intervention and comprehensive care for EDs at present, although due to dissimilar health care systems the barriers to care differ.

My own personal opinion is that neither system does a good job of treating eating disorders. The labyrinthine system of insurance coverage and treatment options (most of which aren't covered by insurance) in the US is almost impossible to navigate and just as impossible to pay for. If you have an eating disorder, you rapidly learn the meaning of terms "not medically necessary" and "out-of-network" and how to meet your annual deductible by the third week of January. Options, yes, if you can pay for them, but precious few are evidence-based. In the UK, you face year-long wait lists and draconian criteria for hospitalization. Yes, everyone gets care, if you can survive long enough to get seen.

Both systems have their advantages and disadvantages, but the plain fact of the matter is that we, as a human race, suck at treating eating disorders in particular and mental health issues in general. I don't know of any shining examples out there. No one has all the answers. But I know that some of the answer lies in developing evidence-based treatments and insisting upon their use. Because giving treatment to everyone won't do much good if most of those treatments have no proven efficacy.

A recent op-ed piece in the UK's Guardian suggested that counselling and psychotherapy should be state-regulated. The argument presented in the article asserted that one of the major needs for external regulation was to prevent misconduct and abuse. These are both legitimate concerns and need to be addressed, but my thoughts on more stringently regulating therapy* are related to using the most effective methods possible.

Finding a good therapist is a total shot in the dark. The leading ED "expert" in my metro area when I was first diagnosed was old-school psychotherapy. Yes, there was a couch, and yes, there was the "tell me about your mother." Not that I don't have issues with my mom (my current therapist can tell you that our relationship is very good though definitely not perfect), but discussing them didn't help my ED recovery.

Even in my last ride on the therapist merry-go-round, after I moved to DC, was frustrating. Although she said she used CBT, we didn't really address anything related to eating, which was why I had gone to see her in the first place. The clincher was when she asked, "So did you always feel a need for control or did it start later?" I realize I could have educated her, true, but I was also sick and tired of educating my medical providers. If I knew as much as them, how were they going to help? I don't resent being honest about what I need to work on, but I do resent having to educate "experts" about ED basics (it's a brain disease, it's not "about control," here are some good evidence-based treatments).

Therapy can be a powerful tool that changes the brain, just as do SSRIs and other psychotropic medications. Though I remain skeptical of the FDA's ability to weed out every last one of the bad eggs, the regulation is there. To be certified as a therapist in the US, you need to work under a licenced psychologist for a certain number of hours after graduating from your degree program. You also need to pass the board certification exams. All of which is well and good, but there is still no guarantee that a therapist will be up on the latest tools and research, the latest tests and diagnoses, the newest evidence-based treatments. With MDs, the expectation is much more omnipresent.

Medicine contains aspects of art along with science- I don't deny that. But working with people's brains and lives is a tremendous privilege that should be accompanied by certain responsibilities. I don't want to just feel better after therapy, I want to be better. After so many of my early therapy sessions, I "felt better" because I managed to avoid the hospital and avoid changing my behaviors. I could vent about my horrible, controlling parents, and I could discuss other things as well. But sometimes now when I leave therapy, I don't always "feel better" because I know I'll need to eat more food or start being accountable to myself or any number of things that just plain suck.** The difference is that I'm getting better, which makes me feel better.

Maybe this is less about regulating the actual therapists and more about regulating the types of therapies provided. I'm not looking to create a horde of Mr. Robato therapists- professional judgement is a powerful thing. But just because riding ponies is fun and enjoyable doesn't necessarily mean its effective (no, "research" from Remuda Ranch on equine therapy saying it's effective doesn't count). Nor does reliving your childhood trying to find out what first grade playground event "caused" your eating disorder. Discerning where I got some of my less-than-helpful ideas is useful, true, but the work doesn't stop there. Insight ain't action. I want someone to tell me what approach they're going to use, the reasons that it works, the evidence supporting it, and how the think it will help me.

I would love to hear everyone's thoughts on this, especially therapists (sending flares in your direction, Dr. Ravin!). What are the advantages to better regulation of psychotherapy and mental health providers? What are the disadvantages?

*The article focused on the UK's system, about which I know very little. Nonetheless, I do realize that in the US, anyone can call themselves a "therapist," though there are certifications and boards and internships, etc, to be formally licensed.

**For the record, I do feel better much of the time because I feel I have actual tools to begin combating ED.

We know a lot more about eating disorders than we did ten or twenty years ago. But with that knowledge comes the rather sobering fact that we still don't know a whole lot. At Lobby Day 2008, Dr. Cindy Bulik said that we lacked even basic epidemiology on the prevalence of EDs in the general population. People have extrapolated and guessed, but that's kind of like saying you live in the US somewhere west of NYC and east of LA. It doesn't exclude a whole lot.

Besides the epidemiological data that we lack, there is also the problem of how to define and diagnose eating disorders. The gold standard is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition* which basically describes each "mental disorder" as a syndrome. That is, the DSM doesn't go into detail as to what causes the illness, which is unlike many other medical conditions (i.e., the definition of tuberculosis includes the identification of the causative Mycobacterium tuberculosis), but instead just describes signs and symptoms that can be identified by doctor and/or patient. The Wikipedia entry on "syndrome" says that the word

is most often used to refer to the set of detectable characteristics when the reason that they occur together (the pathophysiology of the syndrome) has not yet been discovered.

In simple parlance, we don't know a whole lot about what causes the disease, but we can identify it. Although we know a lot more about what causes eating disorders, we don't know the exact sequence of events, nor do we know what factors are necessary to result in the development of an eating disorder.

Which is why I think that the recent paper titled "Clarifying criteria for cognitive signs and symptoms for eating disorders in DSM-V" is so important. If we can't find a specific bulls-eye to diagnose an eating disorder, then we can at least make that bulls-eye as small as possible so that people who have eating disorders can receive a proper diagnosis.

The researchers, led by Anne Becker at Harvard, took on some of the most profound and disabling aspects of eating disorders: the underlying cognitions.

The literature supports several reasons that individuals with an eating disorder may not endorse cognitive symptoms, despite their presence. These include limited insight, minimization, or denial, as well as intentional concealment related to perceived stigma, social desirability, or investment in maintaining behavioral symptoms. We also identified reasons that the word "refusal" in AN criterion A may render its application problematic.

In my opinion (and this is getting back to A's excellent comment on yesterday's post), it's the cognitions, not the weight, that ultimately delineates people into having anorexia or not.** Not that the behaviors are irrelevant--far from it. But thoughts and behaviors exist in this enormous feedback loop, and both must be changed for ongoing and lasting recovery.

Even using cognitions to define EDs can be problematic due to the prominence and prevalence of dieting and food phobia in our culture. We need to get better at making these distinctions, since I doubt our obese-o-phobic society is going anywhere.

*This was on my list of recommended books on Amazon the other day, causing great laughter and hilarity on my part.

**I am less familiar with how this might apply to bulimia, and I am also tired so I won't tackle it in this post. But I think the frequency of binge eating and purging is important- one episode is definitely problematic, but how can we say that it's a disorder? Daniel LeGrange's group found an actual clinical difference between adolescents with full-blown BN or sub threshold BN. How significant that is, I don't know.

I love it when a seemingly little insight can yield so much understanding. In this case, the insight isn't from therapy or thinking, but instead from research (and a cleverly worded press release).

Why Anorexic Patients Cling to Their Eating Disorder

This has been a topic of much conversation and consternation in therapy for me. My one therapist, Dr. G, would always ask me what I was getting out of the eating disorder because "there had to be something since I kept on starving myself." It's true that my eating disorder had an adaptive function, but in those moments when I could recognize how ill I was, I usually wanted to rid myself of the eating disorder, not cling to it. But Dr. G and I discussed things like control and mothers and feelings and some of it was useful and some of it was simply a time suck.

Many times, I didn't really have an explanation for my behaviors. I didn't necessarily understand them myself, and when an understanding did dawn on me it rarely resulted in real, lasting behavioral change. A lot of times, the ED behaviors were just a part of my routine. I woke up, I did X. At "lunchtime", I did Y. After work/school, I did Z. I ate the same breakfast every day for almost two years because choosing a different cereal was overwhelming and I had planned my meals around this one particular type of cereal so I kept on eating it.

The recent paper from the American Journal of Psychiatry titled Neural Correlates of Impaired Cognitive-Behavioral Flexibility in Anorexia Nervosa, found that my experience with a need for routine and inflexibility was common to many AN patients. In fact, the researchers hypothesized that anorexics "clung" to their disorder because they had difficulties in developing new behavioral patterns.

“In this study, we confirmed that anorexic patients cling to familiar behavioral responses more frequently than healthy subjects, thus suppressing alternative behavior," explained Dr. Hans-Christoph Friederich, head of the working group for eating disorders. The analysis of the MRI images also showed that in patients with anorexia compared with healthy subjects, a certain network pathway between the cortex and the diencephalon is less activated. This network pathway plays a decisive role in initiating and controlling actions under rapidly changing environmental demands.

The results of the study contribute decisively to a better understanding of anorexia. In particular, they make it clear that neurobiological factors are involved and sustain the clinical symptoms. Since psychological and neurobiological factors can influence each other, this may lead to new therapy approaches for anorexia.

"We have developed a treatment program for anorexia patients that specifically targets the flexible modification of behavioral responses,“ says Dr. Friederich. In this way, the researchers hope to improve the success of psychotherapeutic treatment. The MRI examination of the brain could contribute to measure the success of treatment.

(I inserted the links in the above quotes)

It seems odd that I, of all people, would have to remind myself of this. I can (and frequently do) go on hour-long diatribes about the real nature of eating disorders to anyone and everyone in earshot. It makes perfect sense that EDs in other people are mental illnesses because I can see the distortions. I understand how a nibble of a Saltine can seem like "too much food" or how running a marathon can be "too little exercise." I understand it and yet I can see that it's not exactly reality.

My problem is that when I'm thinking these things, they seem perfectly rational. If I had vowed not to eat lunch, and then had a nibble of a cracker, I would have griped about how much I ate. Because a nibble is more than nothing, I clearly ate too much. It doesn't seem distorted in the least. It seems normal and (dare I say it?) sensible.

This is where I have problems. I have a hard time understanding that MY distorted thoughts are symptoms of a mental illness.

I can compare my ED experiences with those I've had with depression and anxiety. I became inured to the mild depression and anxiety that characterized my life, to the point where I kind of stopped noticing it. But when I get really depressed or really anxious, I don't feel like me. I've never been high-energy, but when I don't even want to get out of bed, that doesn't seem like me. It's not pleasant. Taking a shower and going back to bed might be the actual best I can manage, but it's still not pleasant. When I first developed OCD in high school, I thought I was going crazy. I knew that my touch probably wouldn't cause someone to die of AIDS but I was so terrified it might that I washed my hands and tried not to leave the house if I could avoid it. I didn't know that this was , in fact, a mental illness called obsessive-compulsive disorder, but I was able to recognize that something was wrong. More than that, I was aware that other people knew that this was very bizarre behavior.

The anorexia was very, very different. Basically night and day different. Eating less and exercising more seemed very normal and rational and common. I got compliments about how "good" I was being. No one complimented my freakishly clean hands (thanks, Clorox and Ajax!) even though they were freshly scrubbed. No one complimented my ability to stay in bed all day or scream and cry and throw things at the drop of a hat. I had excuses for all of my odd ED behaviors. I had excuses for all of my other odd behaviors, too, but with the ED, I actually believed my own bullshit.

I seriously began to believe that a sip of water would make me fat, that I just "didn't like eating," that I worked better on an empty stomach, that I simply adored the treadmill. There were definitely OCD moments when I believed I was a death- and disease-spreading machine, but these moments also passed. The AN delusions didn't.

Although I continued to lose weight, I wasn't able to see it in the mirror. The number on the scale was different, my clothes were looser, but I still looked the same. Ergo, I must actually look the same. I could tell when other people had cut their hair or lost weight, so the same must be true for me, right? So if my mom is telling me I'm way too thin, I'm emaciated, I'm dying, and I can't see it, it must not be true. I mean, I know what I look like...don't I? I will eat, I told myself, when I see that I'm too thin. Oddly, this is the same trap I fell into on this latest relapse- I couldn't see a difference in how I looked in the mirror despite my almost hourly trips to the bathroom scale.

When I am really depressed or really OCD/anxious, I can tell a difference between those states and my "normal" state. When I am into the ED, it's much harder. I feel almost more like myself--more intense, more driven, more on top of things, in a sense, I feel like a better version of myself--when I slide back into the AN. I can't point to a difference. My mom can. My boss probably could. But if I feel the same and look the same and am just freaking fine, dammit then how in the HELL could I be sick?

How? Because the illness I have, this pernicious eating disorder of mine, makes it very very hard to understand that I am sick. It's one of the symptoms of the illness, this inability to understand that you are ill. Laura Collins introduced me to the term anosognosia and I love that word. Can't pronounce it, but I love using it. The depression and OCD aren't anosognostic- I knew damn well that something was up even if I didn't have a name for it and didn't know that it was a mental illness that could be treated. Anorexia is very anosognostic and it will probably be my Achilles' heel. Not so much the illness itself, but the difficulties in recognizing it.

However untalented I may be at recognizing my own eating disorder even when the evidence is literally staring me in the face, it doesn't change the fact that EDs are mental illnesses. Including my own.

In March of this year, I saw a new PCP for the first time in a while. I used the student health clinic while in grad school or have just continued seeing the same specialists (ie, psychiatrists). I told the doctor flat-out that I have epilepsy and osteopenia, that I struggled with anxiety and depression, and was in recovery from anorexia. We then did a standard family health history, in which I was asked about heart disease, cancer, and diabetes in my close relatives.

The PCP didn't ask about mental health issues in any family members, even though these were the main issues I was currently having (the epilepsy and osteopenia being, of course, secondary to anorexia). Even though, more importantly, that all three conditions (anxiety, mood, and eating disorders) have a substantial genetic component, and that a person is probably going to present to their PCP with one of these issues first, especially since I need a referral to see a specialist.

Recent research titled "Predictive Value of Family History on Severity of Illness" from the Archives of General Psychiatry examined how a family history of anxiety, depression, alcohol dependence, and drug dependence was related to age at onset, recurrence, impairment, and use of health services. The researchers found that family history was significantly associated with recurrence, impairment, and service use, though not age of onset, in each of these four disorders.

The authors conclude that "family history is useful for determining patients' clinical prognosis and for selecting cases for genetic studies."

So why have general clinicians shied away from asking directly about family history of brain diseases? They ask about Alzheimer's or brain cancer, but not depression and anxiety. Terrie Moffitt, one of the authors of the paper, gave two reasons in a recent press release. The first was the stigma attached to mental illness: even if doctors asked, would the patients respond honestly? Or would relatives even know about anxiety and depression in a close family member?

The second reason was related to the DSM itself, the Diagnostic and Statistical Manual of Mental Disorders, the so-called "Bible of Psychiatry," makes no mention of family history. At all. Whether this changes or not in the upcoming Fifth Edition has yet to be determined, but I think it's about time we simply started asking about mental health issues. Many risk factors are well-known, even if not well-understood. Even just by identifying those at highest risk, we can more quickly identify or even prevent some illnesses.

This presentation by Walter Kaye was filmed in March of 2001, before I was even diagnosed with my eating disorder, yet no one ever told me about it or mentioned it. It explains EDs so clearly and succinctly, without blame or psychobabble, that I am astounded no one bothered to let me know this great information.

The New Biology of Anorexia and Bulimia Nervosa: Does Dieting Help People with Eating Disorders Fit Into Their Genes?

You'll need QuickTime to view- I didn't have much luck, so let me know if you can see it.

Otherwise, just click here to view the slides. There's one gratuitous skinny person picture, but it's not too bad.

Then again, I don't know why I'm surprised no one told me about so much of the great information out there. I did find it, yes, which makes me lucky enough to be tech savvy to know how to search and inquisitive enough to go looking. But I shouldn't be the person doing the research to learn all about my own illness. I wish someone out there had told me such great information, right from the get go.

Am I bitter? Maybe.
Has it fueled my passion? You better believe it.

Okay, this sounds pretty basic. I know my eating disorder is not me, and that I am not my eating disorder. I know that I didn't choose to become anorexic and that it wasn't my fault I got ill. My disease was the result of genetic predisposition, a culture of avid dieters and thin-is-in, and some really bad luck. I get that. And yet, I still feel almost no emotion towards having had anorexia. I feel plenty of emotion towards ME for being short-sighted enough for starting down that primrose path turned sewer, but not towards the illness.

I mean, my eating disorder has made a mess of my life, and I still can't get angry at my illness. Me, yes. Ed, no.

Which is why a blog post titled "Hating the illness, not the afflicted" likely struck home with me. Christine Stapleton writes:

It has taken years, and many raging swings of a foam bat against a pillow, to separate the disease from the nasty words, neglect and embarrassment caused by my own alcoholism and the alcoholics in my life. I think of my parents’ cancer, and how easy it was to hate their cancer and not them. But I hated my father’s alcoholism - and sometimes I hated him. I wish with all my might that I had been able to separate his alcoholism from him, the father who loved me immensely - the very best he could.

Today, as I wade through the wreckage of another alcoholic in my life, I will try to separate the disease from the person. Alcoholism is an explanation, not an excuse. I will carefully walk that line between allowing myself to be hurt and hurting the still sick, and suffering alcoholic. And I will pray that I can see that line today and stay on it.

Separating yourself from an illness that seems like you but isn't, that causes you to behave irrationally, to distance yourself from loved ones, won't be straightforward. Because the eating disorder? It seemed like me. It was me. A sick me, but still fundamentally me. Now, it's a recovering me, the same me that was sick and demented and angry and irrational.

I haven't forgiven myself for my eating disorder, and maybe it's about time.

There was a lovely essay in yesterday's New York Times called "A Guy, a Car- Beyond Schizophrenia," about moving on after 20 years of schizophrenia. Harry, the patient, had been unable to drive for years and now that his disease was in remission, he wanted to learn how to drive.

The author, a psychiatrist, had this to say about the illness:

For decades, the condition was thought to have an inevitable downhill course, much as we still see with Alzheimer's disease. Even during my residency in the early 1980s, most of us were gloomy about schizophrenia.

We now believe that schizophrenia comprises several different disease processes and often has a more benign course. We have begun to speak not only of remission, but even of recovery — and hope.

Hope is what Harry presented to me at his most recent appointment — along with a request that raised the hairs on the back of my neck. He wanted me to sign off on his application for a driver’s license.

Suddenly, I was caught between two conflicting visions: one of my patient obeying some malign voice behind the wheel, with who knows what consequences; and another of a young man yearning to get his life back.

And Harry did learn to drive and did get his life back.

All I can think while reading this is that one day people will write essays about eating disorder treatment filled with such hope. I do believe there is hope for all of us, otherwise I would have given up a long time ago. But so much of what I read in the news is doom and gloom, the grim realities of the struggle, of relapse, of death and despair and pain. No doubt Harry's life had these factors, too, and no Ferrari can ever make that suffering "worth it." But it can help us endure, help us keep moving forward until we can get our driver license and move beyond the eating disorder.

The need for specialist care took center stage in a news story about Scotland's first anorexia unit that is opening soon. Although I could comment for quite some time about the need for urgent, appropriate intervention for ED treatment (whether or not the patient is ready), that's not what struck me in this article. What really gave me pause for thought was this one sentence:

A major criticism of the present system is that patients with eating disorders are often kept in wards with those suffering from more extreme forms of mental illness.

Because...anorexia isn't extreme?

There are arguments both for and against treating EDs on general psychiatric wards. Though I have been in residential treatment for my eating disorder, the times I was in the hospital was on a general psych unit (under the care of an ED specialist psychiatrist). The system wasn't perfect; cheating was rampant. One of the units I was on tended to be a holding tank for geriatric patients waiting to get into nursing homes.

The one benefit of being thrown in with addicts and people with schizophrenia, bipolar disorder, depression, anxiety, you name it, was that it drove home the point that my eating disorder was a mental illness. I wasn't just a stupid girl who wanted control and if I could stop being so damn stubborn and just eat already, then I could bust this joint.

People who are hospitalized for eating disorders are generally so phobic of food they would rather die than eat. They cannot perceive their body accurately. They cannot perceive hunger and fullness. They cannot stop exercising or bingeing or purging or starving. They cannot function in day to day life. They cannot. It's not a matter of will or choice or any of that. It's an illness over which the sufferer has almost no control.

There are lots of good arguments in favor of specialist ED units. But one of them is not because eating disorders aren't "extreme" mental illness.

Just ask me.

I cheered a little when I read this op-ed piece in the New York Times today: To fight stigmas, start with treatment

Writes Sally Satel:

Altering public attitudes toward the mentally ill depends largely on whether they receive treatment that works. This, in turn, sets in motion a self-reinforcing momentum: the more that treatment is observed to work, the more it is encouraged.

We see this in some of the more recent trends in treatment promotion: Psychiatric medications are routinely advertised on television. The military is taking meaningful steps to make treatment for combat stress standard. And last fall, President George W. Bush signed a law that prohibits health insurance discrimination against patients with mental illness.

Antistigma campaigns are well-meaning but they lack a crucial element. No matter how sympathetic the public may be, attitudes about people with mental illness will inevitably rest upon how much or how little their symptoms set them apart.

We talk a lot about stigma and eating disorders at conferences and meetings, amongst families and professionals. Research has shown that biological explanations of eating disorders help reduce stigma, yet most of the time, people still blame anorexics for their "behavior."

I'm not going to say that the less-than-optimal treatment outcomes, especially for adults with eating disorders, are solely to blame for the stigma against EDs. Eating disorders have a wealth of sociocultural baggage to carry as well. However, Satel raises a good point that isn't often broached when the discussions about stigma arise: we need better treatments. It's too easy to see someone with mental illness as "damaged" or "defective." That their illness is permanent- not to mention that it might be a character flaw instead of a real disease.

If we can start seeing eating disorders as treatable--if we can start actually developing and applying those treatments to sufferers--maybe some of that stigma would start to evaporate.

(Read all of Satel's article- it's worth it.)