Balancing seriousness and hope

In a well-thought editorial in the American Journal of Psychiatry, my homeboy Walt Kaye has written an editorial on eating disorders titled "Eating Disorders: Hope Despite Mortal Risk." Besides presenting good information, what I especially loved about this piece was how Kaye balanced the severity of EDs and their potential deadly nature with hope for recovery.

Kaye explains the "vicious circle" of ED behaviors with a nice diagram (below) and this summary:

Childhood personality and temperament traits, which tend to be relatively mild, appear to contribute to a vulnerability to development of an eating disorder (7). Such traits may become intensified during adolescence as a consequence of the effects of multiple factors, such as puberty and gonadal steroids, development, stress, and cultural influences. For anorexia nervosa, there is a dysphoria-reducing character to dietary restraint. In contrast, for bulimia nervosa, overeating is thought to relieve negative mood states. But chronic pathological eating leads to neurobiological changes that increase denial, rigidity, depression, anxiety, and other core traits, so that patients often enter a vicious circle. This results in a out-of-control downward spiral whereby a significant proportion of patients develop a chronic illness or die. Fortunately, a substantial portion of those with anorexia nervosa and bulimia nervosa recover by their early to mid-20s, although mild to moderate degrees of temperament and personality traits persist, often with positive attributes.

Since these personality traits usually existed before the onset of the eating disorder, they likely persist after recovery. The key, says Kaye, is to use these traits for good instead of evil. For many individuals, learning to guide their innate personalities is a major task for ongoing recovery.

But receiving effective treatment in order to reach a lasting recovery is often difficult. Access to care--whether financial, geographical, or otherwise limited--is surprisingly low in many places. Denial of treatment by insurance companies (in the US) poses a major limitation to how effectively a person can be treated.

Writes Kaye:

It is important to emphasize that these individuals—and their families—suffer for many years while symptomatic and, as the Crow et al. study (3) suggests, may be at risk of dying during this period of illness. Still, it is critical that insurance providers recognize that for many individuals, anorexia nervosa and bulimia nervosa do not constitute a black hole of endless treatment costs. In fact, appropriate treatment may keep people alive and healthy during the years that they are symptomatic. Such treatment counteracts the out-of-control spiral, minimizes medical complications, and presumably increases the likelihood of a good outcome. Moreover, many families get burned out during the seemingly endless struggles during the ill state. To prevent families from giving up, it is important to explain to them that many individuals with eating disorders do get better, but only after many years.

One of the next major tasks of researchers is to find ways to decrease the length of time to recovery and reduce the chronicity and mortality rates of eating disorders.

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9 comments:

Cathy (UK) said...

I really like the research of Walter Kaye (et al.) because the findings oppose the common myths that:

1. EDs are 'lifestyle choices'
2. EDs are not serious illnesses and so they do not 'deserve' the same recognition as many physical illnesses.

Within his Editorial it is stated "Unfortunately, a subgroup of patients with eating disorders have a persistent, chronic course and high mortality. Such findings raise the question of whether physiological factors contribute to outcome." Precisely what he means by this is rather unclear (to me anyway).

Is he referring to the possible role of physiological disturbances caused by an ED on outcome - or is he suggesting that specific psychological factors are responsible for chronic EDs?

This interests me because I was once considered chronic and resistant to treatment because of a 30 yr history of low weight restricting anorexia nervosa. Currently I would class myself as being in remission - after a 30+ pound weight gain and maintenance for 2 yrs.

Perhaps what separates individuals with a chronic or longstanding course of anorexia nervosa from those with a shorter course are additional traits that are not mentioned by Kaye et al., but have been highlighted by the likes of Christopher Gillberg, Janet Treasure and Nancy Zucker - i.e. traits on the autism spectrum which make full integration into 'life' more difficult post-ED, and also made life difficult pre-ED?

However, prolonged EDs may exert a 'scar effect' on the brain which alter its function.

And then there's the situation that a person has become so physically disabled by their ED and/or has spent so many years in an ED 'bubble' that they simply don't know where or how to begin to pick up their life?

midoriliem said...

Is there a way to be able to get a better look at the diagram? I can't zoom in and I would like to!

lostgirl said...

I read this study yesterday and it filled me with dread. The idea of chronicity sounds quite hopeless, and as a person with seemingly a chronic case, it scares me that us "chronics" will never get better. They don't seem to have any treatment ideas on how to treat chronic cases.

Anonymous said...

http://ajp.psychiatryonline.org/cgi/content/full/166/12/1309/F1
Link to enlarged diagram and article.
M

Laura Collins said...

This article is a holiday gift to us all!!

Carrie Arnold said...

Cathy,

How I interpreted that quote by Dr. Kaye was that there may be underlying physiological differences between the people who have a shorter, milder course of ED, and those who have a longer, more chronic course of ED.

Lostgirl,

I'm not positive what exactly Kaye means when he says "chronic." I know many people who would certainly fit that label (myself included) who have gone to make incredible strides towards recovery or to recover completely. Dr. Kaye is right when he says we don't have any empirically-supported treatments for people with chronic EDs, but I don't think any treatment provider worth their salt would give up on someone just because they've been sick for years. It makes recovery longer and more difficult, but far from hopeless.

I've been labeled "chronic" and "treatment-resistant," but most people with EDs are resistant to treatment. And the chronicity stemmed (in part) from ineffective treatment--and also in part from my bad anxiety and depression, which makes recovery more difficult.

You are still here and still fighting ED- that's reason for hope. Take pride in all you have accomplished in spite of ED and all the progress you have made in your fight to recovery.

Sarah said...

Best part of this post: tie between the awesome logic model and you calling Walter Kaye your homeboy.

I'm going to start referring to Dr. Cynthia Bulik this way...just kidding.

Laur said...

You should come to Pittsburgh and work with Walter Kaye in person!
;-)

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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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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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