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From NEDC Newsletter 2016

Eating disorders are complex mental illnesses. To date, no single cause has been identified. Rather, widespread research suggests that the onset of an eating disorder is unique to the individual and often involves the integration of multiple factors (Culbert, Racine, & Klump, 2015; Rikani et al., 2013). Understanding these known risk factors has the potential to improve treatment methods, determine high risk groups for prevention programs and reduce stigma (Striegel-moore & Bulik, 2007). Current literature explores genetic, psychological and socio-cultural influences.

Genetic Vulnerability

The genetic link to eating disorders has been a consistent focus in scientific literature. Previous findings from family and twin studies indicate that eating disorders have a hereditary component (Trace, Baker, Pe, & Bulik, 2013). In particular, one study found that first-degree relatives of individuals with Anorexia Nervosa are 11 times more likely to develop the illness than relatives of individuals without the disorder (Strober, Freeman, Lampert, Diamond, & Kaye, 2000). This suggests that genetics can influence an individual’s vulnerability to eating disorders.

The onset of eating disorders, specifically Anorexia Nervosa and Bulimia Nervosa, typically occurs during adolescence (Hudson, Hiripi, Pope, & Kessler, 2007; Striegel-moore & Bulik, 2007). The complex hormonal, physical and neural changes associated with puberty increase the likelihood of adolescent engagement in disordered eating behaviours (Klump, 2013). Given such, puberty is recognised as a significant risk period.

Although there has been decades of research exploring the genetics of eating disorders, the biological causes are still not well understood. This may be because the majority of studies involve small sample sizes and are often conducted during the acute or recovery phase of an eating disorder (Trace et al., 2013). The QIMR Berghofer Medical Research Institute in Queensland are currently undertaking the largest international investigation into the cause of Anorexia Nervosa. This study, known as the Anorexia Nervosa Genetic Initiative (ANGI), seeks to identify the specific genes associated with Anorexia Nervosa in the hopes of better understanding the causes and finding a potential cure.

Psychological Factors

A connection between certain personality traits and eating disorders has been identified. Research into Anorexia Nervosa and Bulimia Nervosa has shown that obsessive compulsive personality disorder, low self -esteem and perfectionism are considerable risk factors for disordered eating behaviours and attitudes (Culbert et al., 2015; Egan, Wade, & Shafran, 2011). A recent investigation into childhood obsessive compulsive personality traits found that the presence of perfectionism and inflexibility in early life can predict the later development of an eating disorder (Southgate, Tchanturia, Collier & Treasure, 2008). Personality types are also important to consider when treating an eating disorder, as obsessive compulsive tendencies may continue to drive restrictive and rigid behaviours. Given such, Egan et al. (2011) argues that traits such as perfectionism should be treated alongside an eating disorder, in order to effectively reduce disordered eating symptoms.

The cognitive, behavioural and interpersonal changes that accompany eating disorders can make it difficult to discern the psychological causes from the psychological effects. For example, the co-existence of depression and anxiety with eating disorders has raised debate as to whether such conditions precede or are a direct outcome of an eating disorder.

Socio-Cultural Influences

Socio-cultural influences play a considerable role in the development of eating disorders. Mass media, such as television, magazines and advertising, airbrush and alter images to portray unrealistic representations of the male and female body (Perloff, 2014; Striegel-moore & Bulik, 2007). Predominant images suggest that beauty is associated with thinness for females and a lean, muscular body for males. Individuals who internalise this ‘thin’ ideal and strive for the ‘perfect’ body, are at a greater risk of developing body dissatisfaction, which can lead to dieting and other disordered eating behaviours (Culbert et al., 2015). More recent research has explored the impact of social media on body image and eating behaviours. Andsager (2014) argues that the introduction of Facebook and Instagram has increased our exposure to photo-shopped images and thin ideals. Although a direct link to eating behaviours is yet to be established, the appearance-focused nature of social media platforms has been shown to cultivate body image concerns and reduce self-esteem (Perloff, 2014).

Additionally, there is growing evidence that the ways in which weight, shape and size are discussed in the home have a strong impact on self-esteem and dieting behaviours (Loth et al., 2014). Culbert et al. (2015) propose that environmental and psychological factors interact with and influence the expression of genes to cause eating disorders. Further research into this relationship is needed.

Modifiable Risk Factors

Identifying potential risk factors for eating disorders is beneficial in shaping effective prevention and early intervention programs. Research indicates that prevention programs with the most favourable outcomes are those which focus on reducing modifiable risk factors (Jacobi, Hayward, Zwaan, Kraemer, & Agras, 2004). Low self-esteem, body dissatisfaction, dieting behaviours and internalisation of the thin ideal have been acknowledged as variable factors associated with the onset of eating disorders.

The aetiology of eating disorders is becoming a growing field of research. Although limited conclusive evidence has been recorded, understanding possible influences can inform best practice and encourage effective management of eating disorders.

References

Andsager, J. L. (2014). Research Directions in Social Media and Body Image. Sex Roles, 71, 407–413.

Culbert, K. M., Racine, S. E., & Klump, K. L. (2015). Research Review : What we have learned about the causes of eating disorders – a synthesis of sociocultural , psychological , and biological research. Journal of Child Psychology and Psychiatry, 11, 1141–1164.

Egan, S. J., Wade, T. D., & Shafran, R. (2011). Perfectionism as a transdiagnostic process : A clinical review. Clinical Psychology Review, 31(2), 203–212.

Hudson, J. I., Hiripi, E., Pope, H. G., & Kessler, R. C. (2007). The Prevalence and Correlates of Eating Disorders in the National Comorbidity Survey Replication. Journal of Biological Psychiatry, 61, 348–358.

Jacobi, C., Hayward, C., Zwaan, M. De, Kraemer, H. C., & Agras, W. S. (2004). Coming to Terms With Risk Factors for Eating Disorders : Application of Risk Terminology and Suggestions for a General Taxonomy. Psychological Bulletin, 130(1), 19–65.

Klump, K. L. (2013). Puberty as a critical risk period for eating disorders : A review of human and animal studies. Hormones and Behavior, 64(2), 399–410.

Loth, K. A., Ph, D., D, R., Maclehose, R., Ph, D., Bucchianeri, M., … D, R. (2014). Predictors of Dieting and Disordered Eating Behaviors From Adolescence to Young Adulthood. Journal of Adolescent Health, 55(5), 705–712.

Perloff, R. M. (2014). Social Media Effects on Young Women ’ s Body Image Concerns : Theoretical Perspectives and an Agenda for Research, 363–377.

Rikani, A. A., Choudhry, Z., Choudhry, A. M., Ikram, H., Asghar, M. W., Kajal, D., … Mobassarah, N. J. (2013). A critique of the literature on etiology of eating disorders. Annals of Neurosciences, 20(4), 157–161.

Southgate, L., Tchanturia, K., Collier, D., & Treasure, J. (2008). The development of the childhood retrospective perfectionism questionnaire (CHIRP) in an eating disorder sample. European Eating Disorders Review, 16(6), 451-462.

Striegel-moore, R. H., & Bulik, C. M. (2007). Risk Factors for Eating Disorders. American Psychologist, 62(3), 181–198.

Strober, M., Freeman, R., Lampert, C., Diamond, J., & Kaye, W. (2000). Controlled family study of anorexia nervosa and bulimia nervosa: Evidence of shared liability and transmission of partial syndromes. The American Journal of Psychiatry, 157(3), 393–401.

Trace, S. E., Baker, J. H., Pe, E., & Bulik, C. M. (2013). The Genetics of Eating Disorders. Annual Review of Clinical Psychology, 9, 589–620.

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I’ve written in brief about heart problems with anorexia, but it’s any eating disorder that can also produce severe heart problems. This is the hidden killer for many. I found that not knowing Sophie’s true heart rate until she was in hospital to be a very critical issue. The GP and others treating her before her first hospital admission, didn’t mention heart problems either. Nor did they do a full check on heart rate – lying down, sitting, standing. There was never a moment that they measured drop rate. They also never mentioned the heart rate overnight, when it normally drops. For those with anorexia this is very very critical. Many have their heart rate drop into emergency intensive care zones during this time and never know it. It happened to us and thousands of others. The scary side – heart failure – and not even knowing that it was getting the heart was getting that low.

As we coasted towards our second hospital admission, this time I was more than aware. Our specialist doctor did the proper heart rate tests, but I pushed our GP to do the same (and still struggled for them to understand how important this was). I also took Sophie’s heart rate late at night and in the early morning before she got up. It gave me a very real idea of what her heart was dropping to overnight, it gave me more mileage with the GP and getting her pushed onto the critical admission list.

The article below also outlines the different types of heart problems that arise with eating disorders. I didn’t know that last two and frankly, we should all be told these things regardless when we are in treatment care. I’ve put just the heart information here, but the full article that covers more general information about anorexia is available: http://www.everydayhealth.com/columns/jared-bunch-rhythm-of-life/for-both-men-and-women-anorexia-nervosa-is-increasing-and-the-effects-on-the-heart-can-be-severe/

Anorexia and the Heart

Here are four broad patterns in which the heart is affected with both short- and long-term exposure to anorexia nervosa:

1. Loss of heart muscle. Just like the skeletal muscles in your arms and legs that you can see, the heart muscle loses mass. In patients with longstanding anorexia the heart walls thin and weaken. The heart chambers then enlarge. The pumping function of the heart declines and with it, blood pressure falls. Organs that are very sensitive to blood pressure and blood flow such as the kidneys and liver then begin to fail. Fortunately with weight gain and replenishment of essential vitamins and minerals the heart muscle often recovers.

2. Abnormal heart rhythms. A number of abnormal heart rhythms can occur with anorexia. One is that the heart beats slowly, a pattern called bradycardia. This is a particular problem in people who have weak heart muscles. Normally if the heart function weakens and less blood is pumped with each beat, the heart has to increase the number of beats per minute to maintain the same average blood flow. With anorexia, if the energy stores in the heart are so depleted that the heart rhythm cannot increase to compensate for a weakened heart failure, blood pressure falls more quickly and organ failure develops rapidly.

Another concern is fast abnormal heart rhythms. People tend to be most sensitive to these types of rhythms if they follow a pattern of binge eating and purging. This can result in dangerous shifts and loss of body electrolytes such as sodium, potassium, and magnesium. The electrical aspects of the heart that create heartbeats are critically dependent on these electrolytes. When they fall, chaotic electrical patterns can develop in the lower heart chambers that result in cardiac arrest.

3. Loss of the autonomic regulation of the heart and blood vessels. Our bodies do a lot of things that we are unaware of to help us function. For example, the simple act of sitting or standing requires multiple complex changes in the body. Among these are constricting of the blood vessels to raise blood pressure, and a subtle elevation of the heart rate and contractility of the heart. In people with anorexia these reflexes can be impaired or lost. This can result in profound drops in blood pressure when attempting to sit, stand, or walk. People with anorexia can experience severe lightheadedness, fainting spells, and even cognitive changes.

4. Mitral valve prolapse. The heart valve between the upper and lower chambers on the left side of the heart is called the mitral valve. It closes when the lower heart chamber contracts to pump blood throughout the body. The changes in the heart muscle mass compared the structure of the heart valve can affect the closing of the valve. The mitral valve then can close less tightly and prolapse into the upper heart chamber. In people with anorexia about 20 percent will have mitral valve prolapse. Unfortunately, the heart valve condition appears to persist even after weight gain.

I am seeing more patients with anorexia in my clinic. To a physician, low body weight and in particular the pattern of muscle loss are noticeable signs. Most of my patients with anorexia eat a low to low-normal calorie content in a day, but then exercise excessively. Despite being very underweight they still discuss weight loss goals they hope to attain. More recently, I have encountered a surge in misuse of “natural” therapies to cleanse or purge the colon or work as a diuretic. These therapies are every bit as dangerous when misused as prescription laxatives and diuretics, and can lead to severe mineral and electrolyte depletion a

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With thanks to FEAST for this post. They have spelt it out perfectly. Why add to it!?

Defining Recovery

defining recovery from an eating disorderThe goal of eating disorder treatment is full recovery: living life free of eating disorder thoughts and behaviours. There is always hope, even for patients with chronic illness, but the best path to recovery is early intervention and firm and unyielding progress toward full medical, emotional, and cognitive health. Although they are extremely serious brain illnesses, anorexia and bulimia can be successfully and fully treated.

No patient or patient’s family need ever settle for treatment that isn’t working, is stalled, settles for less than 100% recovery, or stops before the patient is fully self-sufficient.

It is important for parents to know that full physical, emotional, and cognitive recovery is not unattainable or rare. In fact, if properly treated an eating disorder can be short in duration and without long-term medical consequences.

And although it has become common to say that it takes 5-7 years to recover, this is a statistic based on older treatment approaches and drawn from the most severe cases. Recovery is rarely achieved in less than several months, but treatment that languishes or settles for low weight goals should be reexamined.

It is also common to say that one never completely recovers from an eating disorder. This is a disabling and self-perpetuating myth.

FEAST was founded by families who have supported or are currently supporting loved ones through the recovery process. Many of us have seen children and young adults go from gravely ill to full remission of symptoms, living healthy normal lives.

FEAST believes in full recovery.


SIGNS OF RECOVERY
published by Cris Haltom in the EATING DISORDER SURVIVAL GUIDE, May 25, 2006
(adapted from sources below)

1. Eating occurs at regular intervals and is guided primarily by physical rather than emotional hunger.
2. Metabolic rate, if measured, is restored and maintained at a healthful level.
3. The ability to recognize and respond to hunger as a guide for eating appropriately has returned.
4. Weight for height based on age and gender is restored to a healthful range.
5. For females, menstruation is achieved or restored and maintained without oral contraceptives.
6. Skin health, dental health,thermo-regulation, hair growth, and digestion/ absorption functions are restored to normal.
7. Healthy body composition (lean body mass and body fat) is restored and maintained.
8. Caloric and nutrient intake is appropriate for maintaining a healthy weight and body composition.
9. Purging behaviour, e.g., self-induced vomiting and laxative or enema use, is absent.
10. Use of diet pills or appetite suppressants is absent.
11. Excessive exercise is absent.
12. Binge eating behaviour is absent or rare.
13. The ability to tolerate a wide variety of foods so that a good balance of high- quality protein, carbohydrates, fatty acids, minerals, and vitamins is maintained.
14. The ability to tolerate natural shifts in weight (one to several pounds) related to such factors such as hydration changes, illness, and season of the year.
15. The ability to tolerate ‘spontaneous’ natural eating – especially out in public.
16. Weight gain does not deter from eating well.
17. Acceptance of genetically-determined body type, size and shape.
18. The percentage of waking hours spent obsessing about weight, food, and/or body image is reduced to 15% or less.
19. The ability to effectively cope with problems in ways other than through disordered eating behaviors.
20. After physical health is restored, the ability to understand and resolve, other than through disordered eating, the issues underlying and driving disordered eating.
21. The ability to recognize signs of relapse and to seek appropriate help if relapse occurs.
22. Triggers for relapse thinking or behaviours can be identified.
23. The family as a whole has moved beyond food and weight preoccupation.
24. The family as a whole is able to identify, explore, and cope with normal adolescent issues.
25. The family as a whole has created a healthy culture around food and regular meals.

SUMMARY: Understanding what to look for in recovery helps parents recognize signs of improving health. Parents need to be encouraged to hope for recovery, even though statistics about recovery can be discouraging. Recovery may take many routes and may include setbacks and unexpected turns. However, all the evidence suggests that recovery should remain the desired destination and the hope for the future.

REFERENCES Coutier, J. and Lock, J. What is remission adolescent anorexia? The International Journal of Eating Disorders. 2006, 39:3, 175-183.    Hudson, J. I. et al as reported in Eating Disorders Review, “BED: A chronic or temporary condition?” 2005, 16:6, 7.     Peterson, C. and Mitchell, J.E. Self-report measures. In Mitchell, J. and Peterson, C. Assessment of Eating Disorders. 2005, 98-119. New York: The Guilford Press

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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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All of these are early signs, none of them alone mean much, you may see any combination of them. Most of these comments and behaviours can seem innocent, teenage behaviour. Mostly though they are out of character for your child. They will be a departure from their normal personality and family routines. Watch, ask, challenge. Don’t let any of these go unnoticed or uncommented about. Keep watching, keep asking, keep challenging.

If you do, if you have any suspicion at all, bring your child to the doctor and insist, insist and keep insisting.

early signs of an eating disorderThings they say

I just want to eat healthier
I want to be a vegetarian
My stomach hurts
I am not hungry
I already ate
I think I am allergic to….
(foods they never had an issue before or diagnosed allergy)
I don’t eat this
This is not organic or gmo
I just don’t like this any more
I am so sick
What’s in this food (nutrients)

Things they do

Disappearing after meals
Checking out the nutrition labels
Increased exercise
Pushing food around plate
Cutting food in tiny pieces
Chewing food forever
Stop making plans with friends
Taking forever to make it to the table for meals
Frequent showers (especially after meals)
Spending forever in the bathroom after shower – body checking
Sleeping at meals time
Watching cooking shows, reading cook books none stop
Cooking/baking obsessively without eating it
Going to the grocery store and reading all labels
Buying expensive foods that go uneaten
Frequent body stretching and movement
Wearing baggy clothing (despite temperature)
Refusing to go out with friends if meals are involved
Writing calorie/meal/fitness journals
Taking a lot of body checking selfies
Picking fights at meals so they can be sent to room, or storm out
Eating only low calorie foods
Spitting food into napkins
Having to exercise even when injured or sick
Spitting food into napkins
Having to exercise even when injured or sick
Notice the calories in everything
Dissect the ingredients of a meal
Interested in high metabolism foods
Lots of gum chewing
Taking ice baths
Very emotional response if any of the above is mentioned
Skin picking

Things you can observe

Over dressed in summer, under dressed in winter
Blood shot eyes after meals
Social withdrawal
Unnatural seating positions
Constant foul mood especially at meal times
Weight decrease – A child should never ever lose weight
Anxious, distracted, avoidant behaviour at school
If pets, notice if the dog/cat is seating closer to your child
Cats will gravitate to someone with an illness
Dogs will gravitate for food being dropped
Increased perfectionism, rigidity, ritualistic behaviour
Increase in anxiety, depression, OCD if these are already part of your child’s character
Cold hands and feet
Bad breath or personal smell
Small sores on body which take a long time to heal and can bruise easy
Blue finger nails
Obsessive body checking
Thinning and failing hair
Soft down on skin particularly chest, neck and upper back
Loss of menstruation
Panic attacks out of nowhere
Weight gain despite exercise due to B/P or binging
House plumbing issues from: purged food, hair lumps.

With thanks to The Dirty Laundry Project with additions from me.

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C0uldn’t word it better. Most sufferers of an eating disorder self-harm at some stage. Some just flirt with the behaviour, others become entrenched. The self-harm can start before the ED develops, it can start during or be part of the recovery process.

Thank you to PsychCentral: http://psychcentral.com/blog/archives/2015/06/12/11-helpful-tips-from-the-parent-of-a-self-harmer/

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Caring for self-harmersHere are 11 tips that I discovered along the way to help any parent going through a similar situation.

  1. Do not ask why. When someone self-harms, they don’t have words to describe their pain. The self-harm is an outward display of their inner emotions. Asking why will not give you the explanation you are looking for. Your child doesn’t have the answer, and this line of questioning will only make him or her feel uncomfortable and ashamed. Instead, ask if there is anything you can do to help him or her feel better.
  2. Talk to your child about first aid. By inquiring if bandages, antibiotic ointment, or any other type of first aid is needed you are starting a dialogue. This may open up an opportunity for your child to show you more of their injuries or tell you something about their pain. It is important that your child knows that they should wash their wounds with soap and water and continue to keep them clean to avoid an infection. Explain the signs of an infection and the importance of seeking medical attention if needed.
  3. Ask if he or she is safe or can keep him- or herself safe. If your child has hurt him- or herself, then they are in emotional as well as physical pain. Self-harm usually isn’t a suicide attempt, but suicidal thoughts can accompany the self-harm. There is a strong link between previous self-harm and suicide. Do not ignore it. Speak to a professional if suicidal thoughts are involved.
  4. Validate your child’s feelings. Validation is one of the most important elements to learn before parenting any child. You are acknowledging your child’s emotions, not diminishing them. You don’t have to agree with his or her feelings, you just have to be supportive. Everyone deserves to be accepted without judgment. Validation helps your child feel heard, acknowledged, and understood.
  5. Find a counselor, therapist, or psychiatrist. Your child needs to talk to an experienced and competent professional. Do not be afraid to interview them and make sure they are the right fit. Obtain referrals from physicians, friends, or family members.As the caregiver, you need to talk to someone just as much as your child does. Take time to nurture yourself.
  6. Do not punish your child for self-injurious behavior. Self-harm is not an act of rebellion or attention-seeking behavior. Your child is hurting him- or herself because he or she is in a great deal of emotional pain. Don’t make their pain worse. Love them, nurture them, and listen to them.
  7. Remove obvious items that can be used for self-injury. If your child has to go to the effort of finding something to self-harm, rather than grabbing a knife from the kitchen drawer, it may give him or her time to think about what he or she is doing and change his or her mind. Lock sharp items away, take them with you or hide them, but don’t leave them out for easy access.
  8. Research self-harm and healthy coping skills. This is a time when you have a lot of questions. There are many helpful sites about self-injury on the Internet.Learn about Dialectical Behavioral Therapy (DBT). This type of therapy combines standard psychotherapy with skills training. The patients learn healthy coping skills to combat self-harm triggers. DBT works best if the parent also learns about the therapeutic method, so he or she can be supportive and encouraging.
  9. Do not minimize self-harm. When a child self-harms on a regular basis, a parent can get into the habit of thinking that this behavior is “not so bad.” This is dangerous; every incident of self-harm is significant and should not be minimized. Remember there are links between self-injury and suicide.
  10. Be honest, not disappointed. Your child doesn’t want to be in emotional pain or self-harm. Part of the healing process will involve setbacks. Be prepared for these. Never tell your child that you are disappointed in him or her for self-harming. This will only create a barrier in your relationship. Remember to validate. You don’t have to agree, you just have to listen.Honesty can create a bond between you and your child. If you don’t know what to say or do, be truthful and tell your child that you don’t know how to help him or her. They are likely to accept this, because he or she doesn’t know what to do, either.
  11. Don’t say “but.” But is an invalidating word. For example, if you say “I’m proud of you for telling me that you cut yourself, but next time talk to me before this happens,” the only thing your child will hear is that they weren’t good enough. Instead say, “I’m proud of you for telling me that you cut yourself. How do you feel now?” Have a dialogue and then later ask, “What can we do to help you talk to me if you are having these feelings or urges again?” Your child doesn’t listen to everything you say; make sure everything you say is worth hearing.

Overcoming the addictive hold self-harm has on your child will take time, patience, and effort. Offer your help and guidance. Be the parent your child needs during this difficult time in his or her life.

 

APA Reference
Larsen, T. (2015). 11 Helpful Tips from the Parent of a Self-Harmer. Psych Central. Retrieved on June 14, 2015, from http://psychcentral.com/blog/archives/2015/06/12/11-helpful-tips-from-the-parent-of-a-self-harmer/

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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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