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Posts Tagged ‘truth about eating disorders’

This reprinted here in full, making it easier to read. Thank you to Helen Razer for putting it so well and so correctly about eating disorders and the current ‘DIS’ campaign. To read her original please go to: http://www.crikey.com.au/2015/05/07/were-making-ourselves-sick-with-the-publicity-of-eating-disorders/

I will follow in a while with my own post and thoughts on where Butterfly are and aren’t heading and the damage they do because they heavily mix body image campaigns with eating disorder awareness.

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To survive the current calendar, health advocacy groups must claim a month and shake it. January starts with glaucoma and thyroid conditions, and the year ends with Alzheimer’s and AIDS.  This month is given over to a number of health campaigns with notable new May player The Butterfly Foundation currently raising funds and awareness for eating disorders (ED).

Theirs is a well-regarded organisation providing outpatient services to ED sufferers who, in the case of an anorexia nervosa diagnosis, face what is estimated to be the highest standardised mortality figures of any psychiatric disorder. The help they offer is practical and based in firm research. But, like so many other advocacy groups, the public messages broadcast are entirely theoretical and based on flimsy hope.

With the achievable aim of funding itself and the rather more incredible one of stopping ED at its source, the foundation has launched Don’t DIS My Appearance campaign. Let’s set aside the antique hip-hop language that had passed its best before date before Snoop Dogg had packed his first bowl. Let’s also overlook the decision to ask ambassadors to display a middle finger, which I imagine may seem less like a moment of cheeky defiance than a bleak reminder of the toilet bowl to those who suffer from bulimia. Let’s look instead at how this organisation, and others, can so easily extinguish the very awareness they seek to create with crude messaging.

We spend much of the year in a tangle of awareness ribbons and there are those who reasonably argue that we’re bound to stop noticing the meaning of such decoration at all. But even if a public health campaign is good enough to cut through all this shiny bunting, it may achieve the terrible opposite of its intention.

In a study undertaken to assess the effectiveness of the famous breast cancer pink, researchers unexpectedly found that the women have become both more likely to underestimate their risk of the disease and less likely to donate to charities. The marketing professor who undertook the study concluded that in an effort to make the matter of breast cancer seem less taboo, organisers had also drained the matter of its urgency. After all, it’s pink like Barbie.

In a literature review on gender-based violence awareness, authors found that such campaigns can end up describing a standard of behaviour. If audiences believe that violence is very prevalent, as they reasonably might when viewing such ads, the message can license “violent behavior rather than activating behavior to reduce [it]”. In other words, violence is normalised through its depiction.

The Butterfly Foundation runs a similar risk of normalisation with its campaign. It’s a high-profile, celebrity-studded effort that posits EDs as normal and as prevalent enough to ask us all to change our behaviour in order to prevent them.

The thing is, though, this campaign is really not aimed at anorexia patients.”

Of course, all reasonable people would like to see a reduction in the incidence of anorexia nervosa. This disorder, which has a lifetime prevalence of between 0.3% and 1.5% in females and between 0.1% and 0.5% in males, is horrifying. That treatment, if accessible, promises a very high rate of recovery would seem to make the task of “awareness raising” all the more urgent.

If we can save a few lives by making death and extreme disordered eating seem a lot more common than they are — and the campaign absolutely does this by conflating EDs, a diverse group of mental illnesses, many of which have no extreme physical side effects, with anorexia in stating they collectively “kill more Australians than any other psychiatric illness” — then what of it?

The thing is, though, this campaign is really not aimed at anorexia patients. Professor Susan Rossell, a highly regarded expert in EDs with qualifications and associations too several to cite, sees “awareness” of this type aimed chiefly at people with “super anxious body consciousness” rather than an actual illness.

Rossell says that campaigns that demand an end to bullying might have some benefit for some ED patients. But the at-risk anorexia patients whose mortality statistic is used as a call to action are unlikely to be rescued by the injunction not to “dis”.

While there are accounts of anorexia patients who suffered chiding for overweight in early life, this is just one tiny potential element of a complex range of influences, including biological and genetic ones, which can provoke ED. While some patients may report bullying as a factor in their disease, others may report endorsement. Just as the so-called “Pro Ana” and “thinspiration” online community of extreme dieting normalises anorexia, campaigns of the Butterfly type can do exactly the same. To the potentially anorexic mind, the “everybody’s doing it” nature of this campaign is as much of a catalyst as a “dis” or a size 4 pair of skinny jeans.

Scholars in anorexia and all ED commonly use the biopsychosocial model to explain this disorder range. While it might be nice to end the “dis”, it might be also of great benefit to legitimate patients, as opposed to the simply body conscious, to understand that their disease has more of the “bio” and less of the “social” than most of us suspect.

“All eating disorders have a strong biological component,” said Richard Newton, Austin Health’s medical director of mental health and board member of The Butterfly Foundation.  When I suggest that the foundation’s newest campaign continues to situate ED entirely in the realm of the social, he explains that the illness-shaping or “pathoplastic” effects of the culture can switch the disease on. There are, he says, historical accounts that describe anorexia some 3000 years old. The “Holy Anorexia” of ascetic women who sought to become pure through fasting was, says Newton, “apparently epidemic in the Middle Ages”. The culture can turn this genetic predisposition on and off.

But what this awareness campaign does not give us is any indication that the disease may be genetic. Researcher in risk factors for ED at the University of Melbourne Isabel Krug rattles off a list of studies on potential endophenotypes, heritability, genome wide association and other data that we lay people can trust to mean that these disorders, particularly anorexia, involve a genetic predisposition.

There are even emerging biomarkers for anorexia, and Rossell was lately involved in a study on a particular eye movement called the “square wave jerk”. It is my lay understanding that imaging for anorexia shows more evolved promise than for those in the study of all other psychiatric disorders. It’s odd that common wisdom, and a great deal of general medicine, treats a common mental illness like depression as a case of “chemical imbalance” or genes, and anorexia as purely the result of social factors like bullying or super-skinny ladies in magazines.

Depression, despite its lack of biomarkers and clear prevalence among those poor in social capital, is read as biological. Anorexia, despite great evidence of its biological basis, is read as social and The Butterfly Foundation certainly overplays this by recommending being nice to people as a cure for death.

I asked Rossell about our willingness to see anorexia as an entirely manufactured disorder and she said: “It’s because it occurs so often in young girls”. She is unwilling to elaborate much further but when I asked her if it was due to the assumption that young women are empty vessels whose untainted bodies just wait to be filled by the culture she makes an ambivalent noise.

She is not ambivalent, however, on the enduring refusal to study and describe anorexia as having a biological basis. “There are papers I have tried to publish and these have been refused on the grounds that I am trying to overly medicalise anorexia,” she said. “Of course the biopsychosocial model is one that should be observed. But if you continually refuse to acknowledge the ‘bio’ in that complex, then you will end up with no idea of how the different elements interact.”

With medicine so reluctant to commit itself to an explanation for ED, it’s hardly surprising that groups like The Butterfly Foundation would follow suit. But even if we agree that it’s better to take the potential social catalysts for EDs out of the picture, the “dis” campaign fails miserably on that score.

Let’s even allow that the foundation’s normalisation of extreme ED and selective mortality statistic will do no harm and just think about the phrase “don’t DIS my appearance”. Given that the most at-risk ED sufferers are those who are underweight and gain at least as much momentum from the compliments their tiny silhouettes routinely attract as they may have from an early life “DIS”, perhaps “don’t praise my appearance” might be a more effective tactic.

Approbation is, perhaps, even more hazardous to ED patients than condemnation. As Rossell suggests, many public conversations that purport to address ED patients are really just intended for gals who feel like they might be a bit unattractive. And even if making the super body conscious feel a bit better about their flab is considered a good outcome, the “don’t DIS” edict doesn’t even really work here.

If women, both those who suffer an ED and those who just feel a bit shit about their bodies, want to be liberated from the primacy of the image, then surely an obvious solution is to detonate the power of the image.

Here’s my campaign, free of charge, to The Butterfly Foundation next May. How about you try “completely DISregard my appearance”? And instead of using attractive ambassadors and expensive manicures to underscore the lack of importance of the image, try a picture of me after 24 straight hours of researching EDs in my pyjamas. I’ll show you just how visual perfection has very little currency in one adult human woman’s working life.

 

 

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This is worth repeating again, thank you to PEDAW and VanCityBuzz

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Online chatter these days often illustrates there is a long way to go before many people fully realize what an eating disorder truly is: a mental illness, or a disease of the brain.

On February 2, we published an article detailing the struggles of a 21-year-old B.C. woman who has resorted to crowd-funding to treat her severe eating disorder. Some of the publicly posted responses highlight the common misconceptions about eating disorders, so we thought we’d take a look at the kinds of misinformation that gets in the way of the good work being done to help those struggling with eating disorders.

While many of those who responded to our story were supportive of the woman’s endeavors to receive help, another fair share could not understand why her disease warranted help, let alone a news story.

The issue is complex.

But those without the education, life experiences or personal struggles that create compassion for and understanding of eating disorders will continue to criticize the publicity of this disease. They will mumble under their breaths something like “just eat a hamburger” or whisper to their friends “she doesn’t look anorexic.”

And that is where a direct response to these comments is needed. For eating disorders to receive the support they need, the stigmatization needs to be removed and the harsh reality of the disease needs to be learned.

Here are some common misconceptions and comments made about eating disorders, along with responses to the issues from professionals:

1. Just eat if you’re anorexic.

“Having an eating disorder means having neurological or neuroanatomical organization of your brain that creates enormous barriers to eating normally. These barriers include visual and sensory distortions, impacts on reward centers and executive organization of the brain, distortions of senses of fullness and hunger, and over evaluation of body size and shape, in addition to other issues that may be present. The combination of all of these things makes eating incredibly hard to do.”

Dr. Mark Warren, Cleveland Center for Eating Disorders

2. Just smoke weed, then you’ll get the munchies!

“We definitely want individuals to eat and digest food in order to heal their physical bodies. This being said, balance is key, so optimally they will work with supports to find ways of eating without using other substances that further promote numbing out to their present experience.”

Natasha Files, Individual and Family Therapist, Looking Glass Foundation

3. It’s more important to donate money to underprivileged children who can’t afford to eat.

“Suffering takes many forms. I have worked with individuals from all socio-economic realms, with some people having money for food and others not. Please choose to donate money to what moves you, but know that eating disorders are an illness cloaked in shame and secrecy. Many individuals do not get help unless their loved ones encourage them to do so, meaning that asking for support takes significant courage.”

– Natasha Files, Individual and Family Therapist, Looking Glass Foundation

4. #firstworldproblems

“There have been many reports about eating disorders in Western countries in the late 20th century. It has been claimed that those with eating disorders have mostly been white women and that few cases have been seen in non-Western countries other than Japan. Recently, eating disorders have been reported in non-Western countries, such as the Middle East and the People’s Republic of China.These recent studies suggest that the prevalence of eating disorders has been rising among non-Western countries as well. However, eating disorders may present differently in different cultures, and diagnostic criteria based on Western norms may not always be appropriate.”

– Makino, Maria, Koji Tsuboi, and Lorraine Dennerstein. “Prevalence of Eating Disorders: A Comparison of Western and Non-Western Countries.” Medscape General Medicine 6.3 (2004): 49. Print.

5. There are people fighting cancer who can’t eat, and other people far worse off. Stop being so selfish and just eat.

“These kinds of statements just increase the guilt and shame of a person suffering from an eating disorder- which can lead to an increase in coping behaviours designed to avoid those uncomfortable feelings… cue the binge purge cycle or restriction!”

Trixie Hennessey MSW, RSW, Individual and Family Therapist

6. Anorexia is a serious disorder… but it’s not as bad as cancer or AIDS. We should focus on helping those people.

“Categorizing eating disorders as less deserving of support than other illnesses proves the ongoing struggle with stigmatization in our society. One outcome of struggling with an eating disorder is death. Eating disorders are the third most chronic condition among adolescent females (after asthma and obesity), yet have significantly less funding towards research and treatment.”

– Natasha Files, Individual and Family Therapist, Looking Glass Foundation

“Actually, more people die from eating disorders (350,000) than from breast cancer (approximately 40,000) every year. Females aged 15–24 are 12 times more likely to die of an eating disorder than any other cause of death. More people die of eating disorders than any other mental/behavioral disorder including depression.”

– Atlanta Center for Eating Disorders

7. You don’t look anorexic!

“Being the most lethal of psychiatric illness, eating disorders come with a number of serious health consequences, even if the individual looks “okay”. Low blood sugar, blood abnormalities (electrolyte imbalances), enamel erosion, dizziness/confusion, esophagitis, arrhythmias, acrocyanosis, edema, growth retardation in children and adolescents, and sometimes death. Eating disorders affect every system of the body, meaning that glancing at someone’s body shape does not determine the level of physical impact.”

– Natasha Files, Individual and Family Therapist, Looking Glass Foundation

8. You should be grateful you can afford to feed yourself. If you knew real hardship, you wouldn’t have this problem.

“Individuals who develop eating disorders are usually very sensitive.  They are physiologically more sensitive from birth than the average person. They are very in tune with the feelings of others and have a strong drive to want everyone around them to be happy. This often leads to perfectionism as they try to reduce any negativity that they or others will experience. As the disorder progresses they become caught in a vicious cycle where their attempts at being the best that they can be actually does cause others negative feelings — but at that point they can’t just stop. The attempt to be perfect is primarily a way to ensure that nothing about them will cause anyone else any distress and to ensure that others will not find fault in them, something that they are very sensitive about.”

– Atlanta Center for Eating Disorders

9. Starving yourself to death is a choice, just like taking drugs or drinking too much.

“There is no choice when it comes to an eating disorder. There is a choice to start out with behaviours such as dieting, exercising, fasting, etc… but there are many people that diet, exercise and overeat that do not have an eating disorder. There are many people unhappy with their weight and shape who do not have an eating disorder. Eating disorder treatment is complex and an intense process. I would encourage you to question this assumption, as I feel it perpetuates the stigma and feelings of shame that keep people from reaching our for help if they need it.”

– Trixie Hennessey MSW, RSW, Individual and Family Therapist

“Someone can make the choice to pursue recovery, but the act of recovery itself is a lot of hard work and involves more than simply deciding to not act on symptoms. In most cases, the eating disorder has become a person’s primary way of coping with intense emotions and difficult life events.  In order to heal from the eating disorder, a person needs appropriate treatment and support regarding medical monitoring, nutritional rehabilitation as well as learning and practicing healthier ways to manage stress.”

– The Center for Eating Disorders

 

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This post is from the dads-ed blog. He nails the psychology of anorexia  very well and has made the effort to understand what it has done to his daughter. It is how I have felt and talked to myself about this illness and is there in my posts on the psychology of anorexia. It is also how our dietitian talks about how anorexia interacts with the person.

10 Reasons I Hate You      

Even though I don’t really know you, ED, based on what I have seen and experienced of you, manifested through my daughter, here’s a short list of only 10 of the innumerable things I do know about you and that make me hate you with all my heart and soul:

  • You’re a sneaky son-of-a-bitch.  You took over my daughter’s life without warning, slowly, stealthily, and in many disguises so neither she nor I even noticed it until it was too late.  Way too late.  But we’re on to you now.
  • You’re a coward.  You preyed on my daughter when she was in her most vulnerable state.  You want to fight fair?  Prove you’re strong?  Come on…see if you can take over my life.  Any time, any place, buster.
  • You lie.  Somehow and in ways that are beyond my comprehension, you convinced my daughter you were her friend.  Someone who would comfort and console her when all you really wanted to do was control her, make her miserable, and eventually kill her.
  • You cheat.  Well…of course you cheat.  You cheated my daughter out of what should have been some of the most wonderful, fulfilling, happiest, and most joyful years of her life.  You cheated our whole family out of the joy and pleasure we should have been sharing with her during that time and turned those years into years of tears, fighting, arguing, anguish, and heartache.
  • You lurk.  My daughter is getting better right now I think.  I believe.  I hope.  She’s learned what an evil, nasty s.o.b. you are and is fighting like hell to get you out of her life.  But I know you’ll lurk.  As she’s getting stronger you’ll still be slinking around.  Sneaking. Waiting.  You’ll let her think she’s gotten rid of you, but you’ll still be lurking.  Waiting for her to have another tough time in her life when she’s feeling weak and vulnerable.  When her self confidence is ebbing.    When her self image is deflated.  When she feels out of control of her life.  You’ll still be furtively skulking around there hoping to get back into her life.  To take over her life. But be on notice, ED.  I’ll be there, too, this time.  So be prepared because you’re going to have your hands full.
  • You’re greedy.  You want my daughter all to yourself. I’m her dad and I’m not greedy with her, so why in the heck are you?  I don’t expect her to love me and me alone.  Or to spend all of her time only with me.  I want her to have friends…you alienate her from her friends.  I want her to love and spend time with her sister and mom and other family members…you want her to worship you and you alone.  I want her to find a soul mate to share her life with if that suits her…but you, you greedy bastard, want to have everything exclusively in your power to capture, control, and keep her all for yourself. It ain’t gonna happen any more.
  • You’re cruel.  Not only did you willfully and knowingly cause my daughter unimaginable mental and physical pain and suffering, but I think you enjoyed the distress you caused.  And worse, you made her act in such deceitful and hurtful ways towards those she loves the most, that her actions and attitudes caused us indescribable pain and suffering, too.  And I’m sure you took great pride and enjoyment from that collateral damage, didn’t you?  Never again, however.  We’ve got your number now.
  • You’re evil.  I’m not saying you’re Satan, but perhaps you are.  If so, I wouldn’t be surprised.  At least some manifestation of Satan because while in your grasp and control you turned a sweet, kind, loving, honest young woman into a lying, deceitful, unpleasant, angry, and very unhappy person.  Drinking alcohol to excess.  Hiding food.  Destroying her health.  Ignoring her friends or mistreating them.  Lying to me, her mom, and her sister quite regularly.  I think only evil in its purest form could have done that to my sweet daughter.  I know it wasn’t her.  But she’s coming back.  She’s recovering.  So watch out.
  • You’re manipulative.  I really, really hate you for this. You’d never talk to me or those close to my daughter directly or even honestly.  You never showed yourself to us.    Rather you manipulated her so your words and your actions came through her.  You manipulated her like she was your personal puppet.  The part I hate most about that is that although you were the cause, she’s the one who had to suffer the consequences.  While all the while you sat back laughing and having a grand old time, huh? She’s the one who I scolded and lectured about lying. She’s the one who had to put up with my constant harangues about getting control of herself and getting her health back.  She’s the one who had to clean the sides of the highway for days on end after you and your cousin alcohol got her in trouble for driving under the influence.  She’s the one who you manipulated right to the very brink of death by starvation.  She’s the one who had to go into treatment isolated and alone where her bathroom visits were monitored and she woke up every day to a scale and blood pressure cuff.  She’s the one who lost privileges when you manipulated her to “accidentally” knock food off of her plate.  It was her arms that were riddled with needles for innumerable blood tests.  It was her throat that was raw from the feeding tubes.  It was you who made her “accidentally” cough those feeding tubes out of her body more than once – and lie about it.  But we’re ready for your manipulative tactics now.  She and I are ready.  And the rest of the family, too.  More aware.  Better informed. Better armed.  Stronger.  United.
  • Generally, you’re disgusting.  Before you came into my daughter’s life she was quite delightful in every way. You, on the other hand, are monumentally disgusting in every way.  Your devious and immoral ways are detestable.  You literally sicken those whose lives you enter, like my daughter, both physically and mentally, and you also sicken and cause revulsion in those whose lives they touch when under your influence.  Although those under your spell may think they want to keep you in their lives, once they grasp how disgusting you really are, they can’t wait to get rid of you.  And we dads and moms and all the others who have loved ones that you’re influencing can’t wait to get rid of you either and we’re willing to try anything to get your disgusting presence out of and away from our daughters, sons, sisters, and brothers.  Anything.

http://dad-eds.com/blog/ – July 6 2009

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