Common reasons that patients quit treatment (patient perspective):

1. consider “treatment to be inappropriate”
2. sufficient progress
3. not enough freedom
4. group therapy is too difficult
5. worried about work / school consequences

I can’t help but think that some of these tidy explanation are really code for a different (possibly disordered) thought. Here’s my take on what each of these mean:

Consider “treatment to be inappropriate”
Read: “I’m not sick enough”
I wonder if this is completely different from the “I’m not sick enough” idea. It makes sense — during the course of treatment, not only are you (likely) gaining weight, decreasing behaviors, and getting better overall, but you’re also experiencing the admission of new and sicker patients. At some point you start to feel like you don’t belong there.

Sufficient progress
Read: “I’m bored”
Treatment gets boring after awhile, and I think that “I’m ready to discharge” often gets confused with “this is getting old and I want to discharge.” Plus, at some point the initial challenges aren’t challenging anymore. That IS the goal, right? Anyway, when you get tired of treatment, you start thinking “I’m doing well enough to discharge….”

Lack of freedom
Read: “I’m tired of being treated like I’m five.”
It’s crazy how one day you are in the real world and can do whatever you want, and the next day you can be in treatment and have to ask permission to go to the bathroom. Not only can you go stir-crazy from not being able to leave the treatment facility, but it can be frustrating to feel like you always have a babysitter.

Group therapy is too difficult
Read: “I don’t want to talk about this in group.”
Unless it’s some triggering trauma group, I think the most difficult part of group is the fact that it’s a GROUP — not an individual session. There are things that are too hard to talk about outside of your therapist’s office. Having to try and discuss tough things in a group setting and be okay with that is really hard.

Work / school consequences
Read: “I’m screwing up my real life.”
It’s not easy to leave school or work and put your life on hold to go into treatment — however necessary it may be. And, unfortunately, it doesn’t always work out so well either. Often people do lose their job (I know legally they can’t fire you on medical leave, but you’d be amazed how many ways around this stipulation there are!) or have to withdraw from the semester. You need a life to go back to when you do discharge.

Maybe I’m just less honest than all the patients in the study, but I feel like I’ve used every excuse in the book before, and usually they are not as straight-forward as they seem.

Before proceeding, I should probably define medialization, per Simone Rodder’s article, “Reassessing the concept of a medialization of science: a story from the ‘book of life’“:

“The concept of medialization is used to describe the centrality of the media for the communication in society and processes of an orientation of social systems toward the media.”

She then breaks down the concept of medialization into two aspects:

1. increasing media attention for scientific issues
2. increasing orientation of science towards media

This was interesting to me, since you hear a lot about journalists sensationalizing science to produce an interesting story, but not so much about the scientific community distorting their findings to gain more press. There’s another great article — “The media’s and health scientists’ perceptions of strategies and priorities for nurturing positive scientist-media interaction for communicating health research in Uganda” (link to full pdf) — that further explores this scientist-media-society interaction:

“The most common errors in science journalism include omission of critical information and context, misquoting, simplification or sensationalization of headlines.”

“The mass media (radio, television or newspapers) plays a central role in provision of timely and reliable information to the public, fellow scientists and policy makers. The mass media is ofted cited as a primary source of health information.”

Anyway, given all of this information, my next thought is: so what about the influence of social media? Blogs, facebook, twitter, etc.

I think that social media is creating a new kind of medialization — one where you don’t have that intermediary between researchers and the public. Sure, I retweet news articles all the time, but I can also talk to psychologists, doctors, and researchers directly. Now, I wouldn’t consider twitter “a primary source of health information,” but it is a growing medium for all kinds of information… and I do think it’s going to influence this dance between science, media, and society.

How social media affects medialization:

1. Increased specificity of information — either you search for someone well-versed in exactly what you’re curious about or you ask a specific Dear Abby-ish question. The info can be so highly-personalized.
2. Decreased scientificness (I know that’s not a word) of information – aka: more “professional opinions” — Even if the info is way more relevant and interesting than a journal article, it’s not necessarily scientific.
3. Increased availability and variety of information – with the ability to connect to people directly, you have an unlimited number of sources from which to get information. You’re not relying on CNN to interview Dr. Sanja Gupta… you can ask whoever you want. And hey, maybe it’s a doctor… or maybe it’s a yoga instructor.
4. Information is dynamic and interactive – social media conversations are much more interactive than static news articles. In some instances, you’re mixing a few professional opinions with many non-professional opinions.
5. Scalability and/or reach — when you have a large article in the Times, that particular story is popular because a million people are reading it. However, when you have a trending topic on Twitter, a million people may be tweeting about it but only a dozen are seeing each tweet.

The influence of new social media does eliminate many of the barriers to communication that were outlined in the perceptions of strategies article, such as “lack of knowledge by scientists about how to disseminate research” and “poor working relationship between the health scientists and the media.” However, social media has at least as many problems as traditional media. I’m sure that you can take any of the factors that I’ve listed and identify how they are detrimental. Maybe… the evolution of medialization is just different; not necessarily better or worse.

“By regarding a phenomenon as a psychiatric diagnosis–treating it, reifying it in psychiatric diagnostic manuals, developing instruments to measure it, inventing scales to rate its severity, establishing ways to reimburse the costs of its treatment, encouraging pharmaceutical companies to search for effective drugs, directing patients to support groups, writing about possible causes in journals–psychiatrists may be unwittingly colluding with broader cultural forces to contribute to the spread of a mental disorder.”

“These reflections force us to think about the question whether, by publishing this study, we are part of the social construction of “new” disorders? Perhaps that is unavoidable. With this study we are exploring the borderlands and cross-overs between scientific and popular discourses about health and illness. We are facing an increasing media attention for scientific issues on the one hand and an increasing orientation of science towards the mass media on the other hand. The medialization of science, when applied to medicine, can get intertwined with another powerful process of a two-way relationship between medicine and mass media: the medicalization of our society, of which the dissemination of diagnostic labels is a classic symptoms. The two sociocultural processes, medialization and medicalization, actually culminate in cyberspace. With this study we are, so to speak, participant observers at the crossroad of these processes. By publishing about it in a scientific journal we not only are becoming part of this medi(c)alization but also, unwittingly, we may shape and fuel it!”

I think about that last statement all the time whenever I see media attention on eating disorders. While I don’t really want to promote ignorance, sometimes I think that any attention is negative attention — this blog included! It’s a kind of catch-22: the public needs more information to decrease the stigma of mental illness, but at the same time you are “unwittingly colluding with broader cultural forces to contribute to the spread of a mental disorder.”

How many times have you heard about the influence of culture in the development of eating disorders? Fashion, society’s obsession with thinness, celebrity-whatever, etc. You hear about it all the time. Heck, you have groups about it in treatment! However, given this idea that just “regarding a phenomenon as a psychiatric diagnosis” is enough to influence society in an unhealthy way, then essentially even treatment could be viewed as a perpetuating factor of mental illness. Maybe that seems a little extreme, but it’s something to think about.

In a conversation with my friend Emily, she countered by explaining the following:

“While mental illnesses are to some extent social constructions, the thing about research is that you are creating new knowledge by observing and writing about it. While new diagnoses may be fads, they also are probably worthy of additional study and analysis. It’s only through additional study that scientists can determine if they are worthy of being called an official diagnosable disorder. Since psychology is a social science there is far more grey and societal norms influence what is deemed as being pathological…. and since social media is a growing part of our society, it seems understandable that it would have an influence on pathology and symptomology. It also begs the question as to whether or not the DSM is only reliable as a diagnostic resource in western countries.”

Wow, lots of good points and things to toss around. The social media factor is something that I’m going to blog about tomorrow, so stay tuned….

A recent article was published on “Psychological inflexibility and symptom expression in anorexia nervosa.”  It makes a lot of interesting points on controlling the bodily experience, using verbal rules to deal with fears, maladaptive social scripts, etc, but what really interested me was the distinction between psychological inflexibility and perfectionism.

Definition of pyschological inflexibility (according to the journal article):
The inability to behave flexibly in the presence of difficult thoughts, feelings, and bodily sensations.

Definition of perfectionism (acording to wikipedia):
The unitary combination of a desire to be perfect, a fear of imperfection, and an emotional conviction that perfection (not “near-perfection”) is the only route to personal acceptance by others.  The difference [between perfectionism and striving for excellence] is in the meaning given to mistakes. Those who strive, however intently, for excellence can simply take mistakes (imperfections) as inducements to further learning and work. Perfectionists take mistakes as signs of personal defects that make them less acceptable. Anxiety over potential failure is the reason perfectionism is felt as a burden.

I think this is a great distinction for several reasons:

1. “psychological inflexibility” encompasses more than just perfectionistic tendencies
2. the word “inflexibility” suggests something problematic
3. perfectionism is not necessarily a bad thing
4. perfectionism is a personality trait, which may not change even if someone does completely recover from their eating disorder

By examining psychological inflexibility rather than perfectionism, the study was able to separate perfectionistic thoughts from actions/consequences.  Meaning, you can still have perfectionistic thoughts without reacting to them negatively.  This lead to several great findings:

“Although the frequency of perfectionistic cognitions did not change, adolescents’ reported decreased distress in response to those thoughts.  Importantly, decreased distress was associated with reductions in dietary restraint and lower global scores on a structured interview of eating disorder symptoms when baseline levels of symptoms were controlled.  This is consistent with studies of adults with AN that have reported greated acceptance of negative thoughts and feelings about weight and shape corresponded with ED symptom improvement in the absence of any significant change in the content or frequency of the thoughts and feelings themselves.”

and then

“Lower levels of psychological flexibility distinguish individuals with full syndrome AN from those who are weight restored and health controls, while the ability to engage flexibly with distressing throughts and feelings is associated with AN symptom remission across treatment.  Perfectionism and related cognitions which have long been desribed as part of the phenomenology of AN, do not change in frequency but in impact as a result of successful intervention, suggesting how individuals with AN relate to these thoughts may be of prime importance.”

Maybe one of the goals of treatment, then, is not to eliminate perfectionistic tendencies, but to change your reactions to them.  Distress tolerance.  “It’s not perfect, but I can deal with that.”  I don’t think it’s really the perfectionism that’s the problem, so much as the interpretation/internalization of what a mistake (or being out of control, or uncomfortable emotions, etc.) means.

First WHAT!? moment:

Participants were asked how the decision had been reached to avail of their various treatment options. Most participants had no involvement in any decisions pertaining to treatment.

WHAT? No way, I don’t believe that. I think there’s a BIG difference between treatment not being your idea and having “no involvement in any decisions pertaining to treatment.” I highly doubt that every person in this study was court ordered or dragged kicking and screaming into the treatment facility. Most of the people in the study were diagnosed in adolescence, so okay, maybe they HAD to go then… but the participants also all had “a lifetime history of AN.” As an adult, they CHOSE to get treatment. Even in Intervention (the TV series), you are given a choice — either get help or live a really difficult life where no one in your family will support you anymore. It probably doesn’t really feel like a choice, but it still IS one.

I know I’m fussing over semantics, but not taking ANY personal responsibility for your health / illness / treatment is a pet peeve of mine. I’ve had my fair share of anti-treatment periods, and can definitely separate the times I wanted help versus the times I didn’t, but the reality is that I DID show up for that doctor appointment. Maybe she “made” me go, but I could have immediately signed out. Staying in treatment is a decision.

Second WHAT!? moment:
(when talking about deciding factors for dropping out of treatment)

while for three participants (15%) the fear of weight gain was a major contributing factor to dropout.

Only 15% of patients would say that the fear of weight gain contributed to their decision to drop out / sign out of treatment? That’s just not honest. If everyone created a pros/cons list when considering quitting treatment, I bet that weight gain would be on 75% of their lists. Maybe it’s not in the top 3 reasons for leaving, but probably most patient’s top 10. Personally, I might not admit to my professionals that it’s a contributing factor, because I’d want to sound reasonable, rational, and believable (and definitely not want it to sound like a decision motivated by my eating disorder). Also, maybe I should clarify this is a list for dropping out of treatment — ending treatment because you’re ready or your team is ready to discharge you is different.

Anyway, I encourage everyone (who can get it) to read the article, and have a lot of other thoughts on it, but these few statements really stood out for me tonight.

Take the DSM-IV and add water.

Basically the new system expands each eating disorder category to be more inclusive, therefore reducing the percentage of sufferers in the EDNOS category.

How do they suggest doing this? Well…

1. decrease the specificity of each diagnostic category
2. remove concrete diagnostic criteria
3. rely primarily on clinical judgment for diagnosis

I think that by broadening each eating disorder type, they are creating more heterogenous patient populations.  Isn’t this a major criticism of the EDNOS diagnosis that they are trying to resolve?  I’m all for being more lax on the 85% of IBW rule (your diagnosis shouldn’t change just because you gain to 88%) and the frequency of binge/purge episodes, but as I said in my last post, diagnoses are meant to guide treatment.  Even from just a medical perspective, the anorexia diagnosis implies certain hallmark concerns – anemia, osteoporosis, low blood pressure, refeeding syndrome, etc.  Physicians know what to look for.  Research can be more accurate.  I think there are identifiable types of EDNOS patients and they should be classified as such, rather than getting lumped into another diagnostic category that only kind of fits.

I also take issue with their increased emphasis on clinical judgment:

“This scheme also offers an advantage for diagnosing individuals with eating disorders outside of specialist settings, where a comprehensive psychiatric assessment may not be feasible (e.g.. primary care)”

PCPs already often miss eating disorders… even with defined criteria and many present symptoms!  How will removing guidelines going to help them better diagnose patients?

What else bugged me about the study?  Well…

1. Individuals with a “lifetime eating disorder diagnosis” were excluded from the study
2. Course of illness, treatment approach, and treatment outcome were not considered
3. Anorexia was declared the most serious type of eating disorder, and therefore has the “highest position in the hierarchy.”
4. Diagnoses require significant functional impairment
5. Individuals are lumped into broad categories based on just BMI and functional impairment.
6. No definition of “recovery” or guidelines for when a patient is ready to end treatment.

I feel like this system takes current issues in eating disorder research, diagnosis, and treatment, and magnifies them.  Issues like specificity, chronicity, and the definition of “recovery.”

The introduction contains the best definition for “coping” that I’ve seen to date:

Coping refers to the thoughts and behaviors that people engage in so as to manage, tolerate, or reduce internal or external demands that are appraised as exceeding an individual’s resources and is typically thought of as a factor that mediates the relation between stress and the onset of psychiatrist illness.  Coping is often depicted as a multi-dimensional construct, including task-, emotion-, and avoidance-oriented skills.

The whole article is definitely worth the read (and you can download the whole text for free), but there were two things in particular that I found interesting:

1. The healthy controls had the highest level of avoidance-oriented coping skills
2. Partially-recovered individuals were closer to those with active eating disorders, while fully-recovered individuals coped more similarly to the healthy controls.

The avoidance finding was a pleasant surprise (for me).  I’ve always believed that avoidance is a healthy coping skill to some extent… but have had therapists who insist that it is maladaptive.  The article makes a good point about this:

[Avoidant] strategies can be effective in the short-term for reducing pain, stress, or anxiety, and can include some adaptive strategies (e.g., spending time with a special person or going for a walk…)

The second finding about partially-recovered vs. fully-recovered was also validating to see.  The only distinguishing criteria between fully and partially-recovered individuals was the presence of psychological recovery.  I think that sometimes in treatment, individuals can be deemed “recovered” even when they are still struggling with a lot of the old, destructive thoughts.  Personally, I have found this partially-recovered stage to possibly be the toughest.  You’re not using your eating disorder to cope and you don’t have the level of care and/or support as you did at the height of your disorder, but you’re still struggling psychologically.

There are lots of other great points made in the article, so I highly suggest that you take a look!

Before I go further, I want to make two disclaimers.  First, from the article:

…we cannot infer a casual relationship between the parents’ personality traits and the daughter’s personality or psychopathology.  Moreover, correlational analysis does not define a direction for these relationships.  Nevertheless, some of the parental personality traits were specific to eating-disordered daughters, suggesting that they may be relevant.

Second, I in no way believe that parents cause eating disorders (just want to make that clear before I get any attacking comments).  I do think that parental personalities are significant, though.  Not only do they affect your core beliefs but they also influence the relationships that you have with your parents… which affect all of your other relationships in life.

So, with that said, on to my commentary of the article!

The study used several scales (the Clinical Global Impression Scale, Beck Depression Inventory, Temperament and Character Inventory, and the Eating Disorders Inventory-2) to assess personality and ED symptomology in daughters and their parents.  Among these variables were BMI, overall functioning, disease duration, eating attitudes and severity of ED behaviors, depression, and temperament.  The Temperament and Character Inventory (TCI) was a large part of the study, and previous to this article I was largely unfamiliar with it, so I’ll briefly explain it at the end of the post.

In short, the personality of parents, personality of daughters, and ED symptoms were all analyzed.  Among the results, some of the more interesting were:

1. In AN-R, father’s persistence predicted the daughter’s age of ED onset.
2. Also in AN-R, novelty-seeking, body dissatisfaction, and interpersonal distrust were all affected by the father’s reward dependence.
3. Mother’s self-directedness affected novelty-seeking in AN-P and BN.  The same was not true for AN-R.
4. AN-P exhibited the most severe eating psychopathology.  These girls had the greatest body dissatisfaction, drive to thinness, and level of depression.
5. Women with AN-R were less concerned about body shape than both AN-P and BN.
6. The father plays a larger role in personality-based family dynamics of ED women (especially with AN-R).

There are a MANY more conclusions than just those in the study, but I could probably write a whole series on the findings.  I’m trying not to do that.  There are a couple more things that I want to mention, though.  First, the paper discusses the personality types of the ED-daughters.  If you are a family member and are feeling attacked by this point, you might want to read this section since it’s not very complimentary to those with EDs, either.  No one escapes the article feeling good:

Restricting Anorexics - stubborn, obsessive, self-determined
Purging Anorexics - impulsive, immature, disordered personalities
Bulimics – explorative, disorderly, conflicting
All EDs – frightened by potentially harmful stimuli, immature character, low self-acceptance, low resourcefulness, low self-esteem

Now, what’s the take-home message from all of this?  Well, I think that the article does a good job of explaining the role of family therapy in the treatment of eating disorders.  Specifically:

Counseling or family therapy may help modify specific aspects of the parent-daughter relationship to produce specific changes in eating symptoms.

I like the point about helping the parents in family therapy.  To change your relationship and your home environment, you have to help your parents.  The things that you learn from them are reflections of both their own core values and their personality traits.  When they are struggling with their own anxiety, negative body image, etc,., that translates.  I think that when you (the person with the eating disorder) is in therapy and are being told things like it’s important to take care of yourself, you have to cut yourself some slack, what you think and how you feel matters, you don’t have to listen to the messages of society, etc., that it’s hard to believe these things and take them as truth when the people around you don’t.  Will my dad ever work on his anger issues?  Probably not.  Do I think it would help both him and I?  Sure.  Is my mom ever going to let go of her own disordered eating tendencies?  Unlikely.  Would her being healthy being a good influence on me?  Yes.

There is clearly a link between parental personality, the daughter’s personality, and ED symptoms.  I think that family therapy that helps the parents with their own issues then allows them to form healthier relationships with their daughters, which helps with her ED recovery.

——————————–

The Temperament and Character Inventory (TCI)
Purpose: Instrument used for the dimensional assessment of personality, with four dimensions assessing temperament and three assessing character.

Temperament:

1. Novelty seeking – level of exploratory activity
2. Harm avoidance – efficacy of behavioral inhibition system
3. Reward dependence - maintenance of rewarded behavior
4. Persistence – ability to resist frustration

Character:

1. Self-directedness - view self as autonomous and integrated
2. Cooperativeness – view self as part of society
3. Self-transcendence – how self is integral part of the universe

• The greatest concerns among people living with bipolar disorder are that their symptoms will have an impact on daily life, such as family, relationships, or job (73%), and that they will have long periods of depressive episodes (63%).
• Ninety percent of people living with bipolar disorder said that they have difficulty managing or completing day-to-day tasks due to their bipolar depression symptoms.
• When asked how they felt most of the time, only 27 percent of people living with bipolar disorder said they felt well-balanced and just 23 percent felt their depression was well-controlled.
• The majority of people living with bipolar disorder agreed that bipolar depression causes difficulty in their ability to manage housework (73%), run errands (59%), groom themselves (53%), and pay bills (49%).
• Sixty-one percent of people with bipolar disorder said their depressive episodes last longer than their manic episodes
• Fifty-three percent of people living with bipolar disorder agreed that they would rather feel “less than perfect” than go through another medication switch.

These findings got me thinking — what are/were the most disturbing effects of the eating disorder on my life?  I would have to say….

• Constant preoccupation with food that took away from my ability to concentrate on school / work.
• Low blood sugar and tiredness that further inhibited my school / work efforts.
• Heightened depression, anxiety, and panic attacks.
• Tension among family members due to their frustration/concern and my irritability.
• Avoidance of most social situations in fear of the event involving food.
• Isolation from friends.
• Lack of interest in all hobbies and many relationships, and. the inability to motivate myself to care about the things I once cared about.

I could probably make a list three-pages long, but these are probably some of the most upsetting elements of the eating disorder.  It would be interesting to see a similar survey to the Bipolar Depression Treatment Dynamic conducted for EDs.

Your body requires a certain number of calories to function at full-capacity.  When you chronically deprive your body of these calories, it has to adapt to the calorie deficit to survive.  One of the ways that it does this is to cut out non-essential functions, like menstruation.  However, in recovery, it’s possible to gain weight without really restoring your metabolism (believe me).  If you’re still subsisting on a sub-optimal number of calories, then your body might still not feel like it can spare the extra calories that menstruation requires.  You are only able to maintain that weight on those calories because there are still processes that are being cut out.  This means that your metabolic rate is lower.

Again, this is my unscientific reason, that happens to make a lot of sense in my mind.  Thankfully some researchers came along to actually research this…

From the article:

“The purpose of this study was to investigate a possible mechanism for amenorrhea in adolescents who were  90-130% expected body weight with a history of anorexia nervosa, bulimia nervosa, or eating disorder not otherwise specified.  Using indirect calorimetry, we examined the metabolic differences between participants who were menstruating regularly compared with those who were amenorrheic.  Our hypothesis was that participants with amenorrhea would have a lower REE than those with regular menses.  We also proposed that both groups would have a lower REE than would be expected for age, weight, and height due to their dieting, calorie restriction, and eating disorder behaviors.”

And the conclusion:

“Using indirect calorimetry to assess REE, we showed that a hypometabolic state persists despite weight restoration.  There were significant metabolic differences found in weight-restored participants was amenorrhea as compared to participants who had regular menses.  Participants with amenorrhea consumed a lower fat diet, that a lower REE, and were at a lower mean body weight.”

So… overall, I was on the right track.  However, the article leaves me with several questions:

1. Why do recovered anorexics/bulimics have a lower REE than others their age without an ED history?
2. What is necessary for resuming menses?
3. I have been told by several doctors that often a stint on birth control is necessary to “jump-start” your period.  How does that relate?  And, how does that affect REE?

I think that the situation is a Catch-22.  Weight-restored patients with amenorrhea have a lower REE, so their metabolic rate is reduced and therefore need fewer calories.  However, they are still not getting their period, so do they need to be eating more?  I understand that you need to eat more to raise your metabolic rate and get your period back (in theory), but as a weight-restored anorexic I will tell you that my ED is screaming, “See!  You DON’T need that much food!  Your metabolism is slower!”  I think that it is a particularly difficult spot to be in since you can’t tell yourself “Well, you do need to gain…”  I am waiting for a follow-up study that shows that increasing caloric intake fixes said metabolic and menstrual issues.  Now THAT is a study I would be excited to read.

(Unrelated P.S. – This is the 100th Grey Thinking post!)