It’s now been a couple of months since Michael Jackson died, but the media circus surrounding everything from the causes of his death to his will and the paternity of his children lives on. And of course it wouldn’t be a Jacko story without a little armchair psychiatric diagnosis: http://www.doublex.com/section/news-politics/did-michael-jackson-die-eating-disorder.
The above cited article by Kate Taylor suggests that, if confirmed, Michael Jackson’s death from anorexia* could help raise awareness about the illness: just as Karen Carpenter’s death 25 years ago raised awareness about anorexia in general, Jackson’s could potentially bring attention to the fact that men as well as women suffer from them the disease.
However, it seems questionable whether celebrity ED stories offer a constructive way to raise awareness about these illnesses.
Firstly, the association of eating disorders with the stars masks the unfortunate reality that eating disorders affect people from every walk of like and are in fact pretty common: our friends from the DSM-IV estimate the prevalence of anorexia to be 0.5%-1% and of bulimia to be 1%-3%. Estimates for the prevalence of binge eating disorder range between 0.7%-4% (DSM-IV), while Machado and colleagues found a prevalence of 2.37% for the residual category eating disorder not otherwise specified (EDNOS).
Put all that together and there are a lot of people out there with eating disorders. Given all this, the presentation of anorexia as some shadowy, secretive disease that preys especially on stars lost in a web of loneliness and confusion generated by their fame and success represents a dangerous fiction. What about the millions of people from ordinary backgrounds who suffer from eating disorders, and the thousands of them who die each year?
Secondly, the often sensational tone of these stories means they may be more destructive than constructive in their presentation of eating disorders. It might be different if they reported, for example, X’s account of seeking treatment for bulimia and her efforts to draw people’s attention to the devastating effects of her illness. However, in reality most celebrity ED stories are little more than simple gossip: "Y’s dieting is out of control", "Z abuses laxatives and vomits twice a day etc." Their tone implies that eating disorders are somehow sordid and shameful.
Would one report on the symptoms of other metal illnesses, say depression, in the same way? “Exclusive: X celebrity only sleeps 2 hours a night” or “Shocking truth: Y finds it hard to concentrate or get moving in the morning”. It seems unlikely, and presumably it’s the celebrity shame factor (“She looked like she had the perfect life, but in reality…”) that sells stories about stars with anorexia, bulimia and other eating problems. This is scarcely innocent tabloid fun. The sensationalistic tone of many celebrity ED stories threatens to distort the public’s understanding of eating disorders, to make sufferers feel ashamed, and ultimately to limit their help-seeking.
Thirdly, ED awareness is not enhanced by the presentation of Jackson (or anyone else for that matter) as a potential poster boy for anorexia. Taylor’s suggestion that M.J. might be “spiritual sister to Mary-Kate (Olsen)”, statement that the eating disorder community is rushing to claim him as “one of their own”, and speculation that Jackson may have been "part of this (male anorexic) club, too" are on the one hand just clever lines of snappy journalism. On the other, they are uncomfortably reminiscent of pro-ana websites’ claims that eating disorders represent a lifestyle choice –and the less that we can all be doing to support that dangerous fiction, the better.
And finally, though it is scarcely his fault, Michael Jackson of all people does little to enhance the image of anorexia in males as an established condition that affects thousands of men (about 1 in 10 anorexics are male). Over the last thirty years eating disorders clinicians and experts have moved away from the notion that eating disorders representing some sort of aberration or evidence of extreme personality pathology, and come to recognise that the symptoms and character of eating disorder symptoms in males are strikingly similar to those observed in females. Given the allegations of sexual abuse, the dysfunctional marriages, the sperm donors, Bubbles the chimpanzee et al., it would be extremely unfortunate for a suspected history of anorexia to be presented as further evidence for Jackson's weirdness.
One thing research has shown us is that eating disorders are dangerous and all-too-common illnesses, which present similarly in males and females, the rich and poor, the well-known and the unknown. However, large gaps remain in our knowledge about their etiology and treatment, and too few resources are being put towards filling them. While anorexia has the highest mortality rate of any psychiatric condition, it accounts for a very small percentage of research funding; in 2005, less than 2% of the budget of America’s National Institute of Mental Health was spent on eating disorders (Park, 2007). The lack of money being invested in eating disorder research is mirrored by the paucity of services available for their effective treatment. If Michael Jackson did indeed die of anorexia, the story being told should focus on why it is that this commonly observed and long-recognised disease continues to kill people in such shockingly high numbers (http://www.anad.org/22385/22406.html) and to ruin the lives of millions of others.
* “Death from anorexia” would in Jackson’s case necessarily be a slightly problematic shorthand: the long-awaited and highly controversial coroner’s report may yet confirm that physical complications resulting from emaciation contributed to the singer’s death, but even in Los Angeles it cannot goes as far as providing a retroactive and categorical diagnosis of an eating disorder.
Machado, P.P., Machado, B.C., Gonçalves, S., Hoek, H.W. (2006). The prevalence of eating disorders not otherwise specified. International Journal of Eating Disorders, 40(3), 212-217.
Park, D.C. (2007). Eating Disorders: A call to arms. American Psychologist, 62(3), 158.
Friday, August 21, 2009
Giving Voice to Ana
As part of my initiation into the eating disorder online community, I thought I should probably take at least a quick look at one of the largest sources of internet ED chat: so-called pro-ana websites.
For me, the initial sensation was a little like the time a couple of months ago that a neighbour told me he wanted to show me something on his computer (alarm bells, anyone?), I all-too-innocently agreed, still did not have the good sense to pull out when I saw thirty pdfs on his desktop labeled “Hitler 1”, “Hitler 2”, “Hitler 3” etc., and finally was subjected to a two-minute “Obama is Hitler reincarnate” slideshow (yes, it turns out that the proverbial guy downstairs was one of the ACTUAL guys who helped inspire America’s latest epidemic). Anyway, to get back to my point… the “thinspiration” offered on many pro-ana sites echoes sentiments I have heard from countless patients. However, it is somehow unnerving to read this stuff in the privacy of your own living room, delivered up with that strange combination of broadcast authority, voyeurism and intimacy that only the internet can bring.
What I found most interesting about the pro-ana websites I looked at was the very public articulation of the “anorexic voice”. Many patients experience anorexia as a voice inside them which berates them for their selfishness, greed and laziness, and guides them towards the behaviors associated with anorexia (dieting, exercise, self-negation, obsessive pursuit of perfection etc.) as an antidote to these characteristics. However, typically the voice operates only in the private universe of the sufferer’s brain -articulated in the real-world its inconsistencies and flawed logic risk exposure. In fact, in many treatment approaches, having patients articulate their anorexic thoughts so that they can be assessed and challenged is an important aspect of therapy, and one that many patients who remain ambivalent about recovery fear.
However, through pro-Ana websites the domain of the “anorexic voice” has extended out from the minds of individual sufferers to find recognition and motivation in each others’ illnesses. Within the “safety” of the pro-ana online community, giving public voice to the internal anorexic voice no longer challenges the illness, it validates it. Firstly, it tells sufferers that other people share their thoughts, therefore lending support to the notion that they represent some external truth "e.g. anorexia is not an illness but a conscious decision and a lifestyle". Secondly, it encourages comparison and competition (e.g. "You think you're thin? Well, look at these pictures and see what you think then.") Given that perfectionism is a common personality characteristic among sufferers, the competition to be the "perfect anorexic" is dangerous indeed.
It is perhaps one of anorexia’s most perplexing qualities that it is frequently experienced as an independent entity which has taken control of the sufferer and which is intent on its own survival. To say simply that anorexia is egosyntonic, that is to say consistent with the sufferer’s self-perception or ideal self-image, does not fully describe the extent to which the disorder can appear to have a “mind of its own”, and to make calculated decisions to ensure its own fortification by strengthening its hold over the sufferer. Pro-ana websites provide a dangerous weapon in anorexia’s armory. Until recently each sufferer’s anorexic voice existed largely in isolation, trapped inside her head. However, by amplifying that voice and turning it into a community of mutually sustaining voices, pro-ana websites have changed its quality –giving the voice of the illness a new-found presence outside individual sufferers and in that other, alternative reality represented by cyberspace.
How do people who use pro-ana websites feel about influencing each other in this way? Certainly the sites come with plenty of disclaimers (e.g. “You can’t decide to become anorexic by reading a webite”, “Pro-ana websites do not support anorexia, but people living with it”). The repackaging of the illness as a lifestyle endorsed by the sites has important implications for how sufferers view anorexia. In the past anorectics usually met each other in a treatment setting, where necessarily anorexia was defined as a problem and an illness. By and large patients saw the illness for what it was in each other, if not in themselves: “Everyone else here is sick and deserves help, but the things my voice tells me are true; I’m an imposter and don’t need help”. This meant that supporting other people’s illness was something of a taboo. However, at the point when anorexia is presented as a lifestyle (rather than illness), and legitimized by so many other people who share the same values (rather than symptoms), this for some pro-ana website users is no longer the case.
Clearly, pro-ana websites are a toxic influence on people who are at risk for anorexia or currently suffering from the illness. However, given that they do exist and aren’t likely to disappear any time soon, maybe eating disorder clinicians and researchers might use them to their benefit. Pro-ana websites provide very striking examples of the “anorexic voice” and how it seeks to manipulate sufferers. Moreover, and like the illness itself, they provide some sufferers with a sense of belonging, direction and purpose they are not finding elsewhere in their lives. Qualitative analysis of pro-ana websites might help to identify and better understand anorexic patients’ needs. Finding constructive, healthful ways to fulfill them is a treatment priority.
For me, the initial sensation was a little like the time a couple of months ago that a neighbour told me he wanted to show me something on his computer (alarm bells, anyone?), I all-too-innocently agreed, still did not have the good sense to pull out when I saw thirty pdfs on his desktop labeled “Hitler 1”, “Hitler 2”, “Hitler 3” etc., and finally was subjected to a two-minute “Obama is Hitler reincarnate” slideshow (yes, it turns out that the proverbial guy downstairs was one of the ACTUAL guys who helped inspire America’s latest epidemic). Anyway, to get back to my point… the “thinspiration” offered on many pro-ana sites echoes sentiments I have heard from countless patients. However, it is somehow unnerving to read this stuff in the privacy of your own living room, delivered up with that strange combination of broadcast authority, voyeurism and intimacy that only the internet can bring.
What I found most interesting about the pro-ana websites I looked at was the very public articulation of the “anorexic voice”. Many patients experience anorexia as a voice inside them which berates them for their selfishness, greed and laziness, and guides them towards the behaviors associated with anorexia (dieting, exercise, self-negation, obsessive pursuit of perfection etc.) as an antidote to these characteristics. However, typically the voice operates only in the private universe of the sufferer’s brain -articulated in the real-world its inconsistencies and flawed logic risk exposure. In fact, in many treatment approaches, having patients articulate their anorexic thoughts so that they can be assessed and challenged is an important aspect of therapy, and one that many patients who remain ambivalent about recovery fear.
However, through pro-Ana websites the domain of the “anorexic voice” has extended out from the minds of individual sufferers to find recognition and motivation in each others’ illnesses. Within the “safety” of the pro-ana online community, giving public voice to the internal anorexic voice no longer challenges the illness, it validates it. Firstly, it tells sufferers that other people share their thoughts, therefore lending support to the notion that they represent some external truth "e.g. anorexia is not an illness but a conscious decision and a lifestyle". Secondly, it encourages comparison and competition (e.g. "You think you're thin? Well, look at these pictures and see what you think then.") Given that perfectionism is a common personality characteristic among sufferers, the competition to be the "perfect anorexic" is dangerous indeed.
It is perhaps one of anorexia’s most perplexing qualities that it is frequently experienced as an independent entity which has taken control of the sufferer and which is intent on its own survival. To say simply that anorexia is egosyntonic, that is to say consistent with the sufferer’s self-perception or ideal self-image, does not fully describe the extent to which the disorder can appear to have a “mind of its own”, and to make calculated decisions to ensure its own fortification by strengthening its hold over the sufferer. Pro-ana websites provide a dangerous weapon in anorexia’s armory. Until recently each sufferer’s anorexic voice existed largely in isolation, trapped inside her head. However, by amplifying that voice and turning it into a community of mutually sustaining voices, pro-ana websites have changed its quality –giving the voice of the illness a new-found presence outside individual sufferers and in that other, alternative reality represented by cyberspace.
How do people who use pro-ana websites feel about influencing each other in this way? Certainly the sites come with plenty of disclaimers (e.g. “You can’t decide to become anorexic by reading a webite”, “Pro-ana websites do not support anorexia, but people living with it”). The repackaging of the illness as a lifestyle endorsed by the sites has important implications for how sufferers view anorexia. In the past anorectics usually met each other in a treatment setting, where necessarily anorexia was defined as a problem and an illness. By and large patients saw the illness for what it was in each other, if not in themselves: “Everyone else here is sick and deserves help, but the things my voice tells me are true; I’m an imposter and don’t need help”. This meant that supporting other people’s illness was something of a taboo. However, at the point when anorexia is presented as a lifestyle (rather than illness), and legitimized by so many other people who share the same values (rather than symptoms), this for some pro-ana website users is no longer the case.
Clearly, pro-ana websites are a toxic influence on people who are at risk for anorexia or currently suffering from the illness. However, given that they do exist and aren’t likely to disappear any time soon, maybe eating disorder clinicians and researchers might use them to their benefit. Pro-ana websites provide very striking examples of the “anorexic voice” and how it seeks to manipulate sufferers. Moreover, and like the illness itself, they provide some sufferers with a sense of belonging, direction and purpose they are not finding elsewhere in their lives. Qualitative analysis of pro-ana websites might help to identify and better understand anorexic patients’ needs. Finding constructive, healthful ways to fulfill them is a treatment priority.
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