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Archive for the ‘eating disorder recovery’ Category

For anyone who saw the ‘DIS’ campaign or participated, this survey is critical. It is not only about the campaign and advertising ‘wins’ or ‘loses’.

It is about getting the correct information about eating disorders out to the public, sufferers, medical professionals and making sure the EDucate is clear and not ambiguous.

Eating disorders are NOT body image developed. 60-80% of all ED’s are genetic/biology based and this is being proven as more research is done, and the percentage pointing to genes rises. The remaining percentage is then a mix of many complex issues of which body image is ONLY ONE of these. 

Most sufferers will say body image is the reason for their ED. In most cases the ED thinking and behaviour is ALREADY in residence in the brain and body image is a symptom not a cause.

The same goes for the ‘diet’ caused my ED. By the time the diet choices start the ED is already in residence in the brain. Again the diet choices are a symptom not the cause.

Please take the time to complete the survey and make a start to build better communication and collaboration with Butterfly so we can better diagnose, intervene, treat and care for sufferers.

https://www.surveymonkey.com/r/dontdismyappearance

 

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The Dirty Laundry Project (DLP)

Dirty Laundry ProjectAt the DLP we celebrate, recognize & honor those whose actions are breaking the eating disorders & mental health “Stigma wall.”

Beating Eating Disorders (BED)

There is so much more to eating disorders than the way someone looks.
Eating disorders are a seBeating Eating Disordersrious mental illness. This disease affects millions of people all over, and has the highest mortality rate of mental illness. Often times, people with eating disorders are afraid of being judged due to the stigmatism and for that reason keep it a secret. Would you keep the diagnosis of cancer a secret? NO!!! This mental illness deserves the same kind of attention and respect as every other medical/mental diagnosis.

Eating Disorder Parent Support (EDPS)

Eating Disorder Parent SupportEating Disorder Parent Support (EDPS) is specifically and only for adults who care, or have cared for a loved one with an eating disorder. We are here for peer-to-peer sharing, support, education, guidance, encouragement, and to offer HOPE as we support our loved ones toward recovery. We welcome parents, spouses, and adult siblings, who are involved in the care; however, we are not a site or a support network for sufferers themselves.

Website: http://eatingdisorderparentsupport.weebly.com/
Facebook: https://www.facebook.com/groups/EatingDisorderParentSupport.E/

International Eating Disorder Action (IEDAction)

International Eating Disorder ActionInternational Eating Disorder Action is a coalition of parents, carers, survivors, sufferers and others, established so that members can take ACTION on issues relating to Eating Disorders (EDs).   We have members in over 15 countries and address issues globally.

Our goals:  1) to increase awareness and knowledge of EDs as treatable, biological, brain-based illnesses that that are neither the fault of, or chosen by sufferers, nor caused by parents; 2) to advocate for national Eating Disorder strategies and treatment systems that use evidence-based services; 3) to demand legislation and funding parity; and 4) to address groups/companies overtly or inadvertently fuelling Eating Disorders by glamorizing them or profiting from them.

Website: http://iedaction.weebly.com/
Blog: http://internationaleatingdisorderadvocacy.blogspot.com.au/
Facebook: https://www.facebook.com/groups/IEDAction/

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Butterfly, with respect your constant body image campaigns and it’s all about looks ideology heavily promote to the general public, medical people, parents and kids of all ages that eating disorders come from body image, dieting or models. You do not separate the issues enough nor do you promote campaigns that clearly state what an eating disorder is – they are genetic/biology based with a very complex mix that trigger the development. Just because you struggle with your body image or you diet does NOT mean you are seriously opening yourself to an ED. Otherwise there would be millions with an ED. Those who develop an ED do so because of a genetic/biological predisposition. Your campaigns do not indicate this and in their simple, trivial body image design muddy what is the truth. You also confuse disordered eating with eating disorders. The two are VERY different and are not the same. Disordered eating can sometimes lead to an ED but again ONLY if your predisposed that way.

If you are the most public spokes group for EDs in Australia then do so without the body image stuff being too closely associated with EDs. We desperately need early intervention, and diagnosis and treatment centres. Yet you spend grant money on silly, superficial campaigns. There is no research at all that says these type of campaigns work in preventing EDs and these have been done world wide. In fact research show they don’t help. Research does however show that early diagnosis, intervention and full on treatment does work. Yet Australia DOES NOT invest in this. Instead we do best practice which in the end ends up worst for the patient. We still cannot even get GPs, psychologists, psychiatrists to even be trained correctly to clearly diagnose an ED or provide correct treatment and therapy. What the medical profession here tells sufferers is appallingly wrong and old school.

Your ‘dis’ campaign makes a joke of my daughters serious (almost deadly) illness and long recovery, as it was never ever about body image nor dieting nor media related. She herself will tell you your campaigns miss the mark. Many others will tell you that. And because people keep pushing the body image barrow, of course sufferers think they can blame their poor body image. They aren’t told of the truth of how an ED develops so of course they blame body image or diets. It is so much more complex and deeper and your campaign does not go that deep. It remains shallow, superficial and unlinked to the reality of an ED. Thankfully my daughter had a decent, highly ED educated medical team who explained what EDs really are and worked far beyond the silly body image idea. Her recovery is a testament to the fact they totally understood EDs, early diagnosed, heavily intervened, used high level therapy and long term treatment.

The campaigning for better body image alludes that this is the key to prevention. This naturally then follows the idea that you can then choose to get an ED or not. By choosing better body image then you can prevent an ED occuring. This is a very wrong concept and not achievable and in the end this type of thinking lays blame at the doorstep of sufferers. They could have ‘chosen’ better, ‘done’ better. You cannot choose to give yourself an ED, you cannot do superficial body image external caring that will prevent an ED developing. By pushing the external body image line, you also make is sound so simplistic and easy to either get the ED and worse, to remove the ED in your life.

You CANNOT prevent an ED. It is wishful thinking and taking the easy/wrong road out to say that good body image will prevent an ED. Complete crap. As parents of sufferers we are so over the body image linkage, the half naked women, and all that goes with this. It does nothing more than send the wrong message, not provide what is needed nor address the gaps in care. We see our children develop EDs, we see the generic and biological trigger set off and we can tell you very very very clearly that if our children had been exposed to your campaigns it would NOT have made any difference. There are and have been for years many such school based programs and self esteem stuff – it made and makes no difference. US research are proving this, they have been at this body image campaign longer than Australia has. It isn’t working for the prevention of EDs.

Research in this country is either suppressed or not valued for the medical side, and obviously not funded. The push is for quick research, popular topics and public opinion. Research is only ever as good as the questions it fields and the frame it has surrounding it. The research touted often aligns to a purpose or campaign and the real research with the truth and guts of eating disorder development is ignored or not done. The strong alignment with genetics, biology, neurology, personality etc are not marketed. In doing so we hide for longer the real truth and we hamper any decent forward progress we can make toward this illness.

Many clinicians in this country do not understand EDs fully nor do they keep up to date with latest findings. They are many of them, still in old school format. Thousands of parents can testify to this hard cold fact when we seek treatment for our children. Our country is very out of date and has a severe limitation on diagnosis and treatment. The parent body is a critical aspect you have ignored and forgotten. We are the frontline of care, we seek, fight and get so frustrated with the lack of knowledge, treatment and care. We are ignored but have far more ability than your experts. In most cases it is us who sees the the real ED, it is us who save our kids by doing refeeding and fighting for correct care because our health system fails us. We can tell doctors far more about this illness, it’s reality and development and yet we are classed as sub-people. Other countries have realised the value of the parent body and utilise them. Australia and its ED areas still ignore our input or only ever include us after all the ‘experts’ have decided what is best. Time to change and start to listen to what is needed and what could be better approaches.

Don't 'DIS' our eating disorder recognition and recovery

Further information:

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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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One of the best resource links on the website for eating disorders.

Gurze Ed Catalogue

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Hope you all had a lovely Christmas with your families and friends. Granted this time of year can be an utter minefield of surviving the family and meals – and that’s just those of us who are healthy! Whatever the day brought I hope you came through in one piece.

It’s update time on how my two are going – thanks for the reminders all. It has been quite a while since I did this. lol, just realised too how out of date my Tumblr profile was, so have updated that too.

Soph, despite the weight loss, is really good. My fears of her being perhaps compromised by the anorexic voice are so far unfounded. She eats widely and varied, flexible and with seemingly no barriers. Her weight loss comes from actually doing some activity instead of sitting in her room on her computer, 24/7, lol. Through all the refeeding, weight stabilisation and long term monitoring with no exercise her body hadn’t ‘repositioned’ the gained weight. Now it has. Normal activity, like walking, has put her right where her body needs to be and the ‘fluffy weight’ is now fully distributed. Her body stores would also be complete. What is now important is for her to not let go of the therapy net around her and continue to monitor and be vigilant about her health. She has a new psychologist for next year, who specialises in ED’s and is on the medicare funding – great for uni students. This combined with the normal uni counsellor (who focuses on Sophie’s personality and emotions) should help her through. LOL, though I think total breakdown towards the end of each semester is on the cards, with mum as first point of call.

Will, is ok. Look really don’t know what else to say. He is surviving and getting through each day. Has dropped out of school (read frustrated mama), but does have goals. As he said, “it still hurts and nothing has changed that way, but I do have goals now”. To me that is huge and maybe he will be alright. As for the new psychiatrist grrrr. Enough time to oversee medication, hand over a new script and ‘see you in two months time’. Oh and sorry this appointment is only for 1/2 hr. Only special asking will get you more time with me!! Seriously!

And there you have it. This last post of this year, compared to my others done at this time of year, is the most positive we have had. 🙂

Thank you to all for the emails of telling me your stories, of where you are, of what it means to live with the eating disorder in your life or your child’s life. Thank you for being part of my world and letting me share in a small part of yours. It is indeed a privilege. To all may the New Year bring you hope, may change happen in a positive way and there is movement forward. xx

Finding hope

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Up front, there is no preventing an eating disorder, nor can you give someone or yourself an eating disorder. It is genetic based and then a complex list of high risk characteristics, culture and environment that may or may not help the genetic tendency. Evidenced-based research has not been begun or done enough to show an eating disorder can be prevented by loving your body and having a good self-esteem. Eating disorders are a mental health illness and like all the other mental health illnesses are genetically based, and education is not going to stop you developing one.

There are lots of words buzzing around at the moment that are used in different ways, different meanings and evoke an emotional response from many. Preventative is one of these words. It’s the buzz word for the Body Image, Self-esteem, Healthy Diet industry which has touched down into eating disorder territory. Taken on a responsible level, some websites and organisations don’t say that good body image and self-esteem will prevent an eating disorder but its worth talking about. Taken though from some others, who only want ‘media click rate’ or sensationalised reporting, they do say that prevention is possible and achievable and only report one viewpoint.

Using the word preventative has responsibility attached to it. You have to have evidence to back up what you say. You have to not give false hope and misleading information. You can have no definite in an area which has so far proven to have none.

When someone uses the word preventative attached to their own personal meaning, then the listener can take offence as the meaning of preventative does not match their personal understanding of the word preventative.

The word preventative has 3 contexts in regards to eating disorders.

Preventative 1. Preventative measures in regard to body, mind and health taken to stop an eating disorder ever developing. It stems from the ideal we can educate ourselves out of developing an eating disorder. Mainly aimed at youth and the self-hate body talk, body image, diet and lack of self-esteem in our young people. Some are so strong on this, it becomes their main/only message and has strong language that makes it sound this type of prevention will work. Others get in on the new media buzz word and pay a level of homage to body image. Its about getting in on the band wagon. There is after all money to be made for some of these organisations. Others take a more reputable approach and mix this new preventative message as a ‘maybe’ but make sure the real truth of eating disorders is in their information.

Preventative 2. Preventative intrusion to stop relapse in early recovery. This is an approach taken by pro-active treatment teams to hopefully head off a nose-dive into relapse in early to mid recovery. It might take the form of admission into hospital or treatment centre, it might be a change in medication or more doctor/dietitian visits. It’s aim is to try and stop the impact of starvation on the body and mind, hopefully stopping further or more damage. It also aims to continue therapy recovery not to go back to medical recovery.

Preventative 3. Preventative life behaviours to stop an eating disorder returning. Those who have fully recovered have written and talked about how stress, life changes, traumas, tragedies, lack of self-care can suddenly put them back on an eating disorder behaviour pattern. Some find being always aware of their body and mind health can have a lot of benefits in preventing an eating disorder creeping back into their lives.

One word but 3 meanings depending upon whether you are before, during or after the eating disorder. Perhaps the industry-standard usage of the word preventative might need looking at. Maybe a better word to describe what we are all trying to do, a word that suits each as a separate area.

We grasp for hope. That is human. If there is a chance that preventing a person from a bad body image and loving their God given body shape, might stop an eating disorder from developing we will follow it. The illness is so tragic and destructive, those who have suffered or cared for or watched someone with an eating disorder, will try anything to stop it happening. In a world where there is no cure or magic pill for stopping or treating an eating disorder, of course we are going to explore other areas. Research tends to catch up with the social and cultural buzz. There will be research done. Having said that sometimes research gets it wrong too. Look how many research outcomes have been turned around in recent times. We need to be careful not to rely too heavily on one industry area alone.

As parents/carers/advocates we need to be discerning in all we read. Take note of where the article comes from, learn the respected names in research, what internet sites are objective and truth related, make sure we read every side so we can weigh up for ourselves how to help our loved one. Don’t take someone’s strident view, or just the fact they wrote a book or blog, started a company or their name seems famous. None of these gives any of us the authority to say we are right. My view of genetic based development didn’t come from just reading authoritative ED sites and research. They were honed and refined through reading personal blogs, stories, articles, and our own anorexia journey. I read the false hope, flakey edge stuff. I am thankful it was there. It helped and made me discerning and far more wise. It gave me the fuller and wider picture.

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