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Posts Tagged ‘eating disorder awareness’

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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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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What I won't share

 

To all those who want information for school projects, media blogs, uni projects:

I will not share or comment on:

  • my daugher’s lowest weight
  • pictures of her at her worst
  • a detailed state of her fingers nails, hair or other physical attributes
  • how eating disorders affect your looks
  • my daughter’s detailed list of safe foods or fearful foods
  • BMI weight for either my daughter or make suggestions for your BMI
  • the words healthy, beauty, inner beauty, protein diets, fresh diets
  • dieting or food tips
  • what are better foods or healthier foods to eat

why:

  • it takes the focus of just how dangerous and devasting eating disorders (particularly anorexia) are
  • it diminishes eating disorders to the physical and superficial
  • it is not helpful or useful for recovery or media intake
  • sends the wrong message about foods, health, body weight etc.
  • eating disorders are not an illness about food or weight
  • there are far, far more devasting consequences and ill health from having an eating disorder than your nails, skin, hair etc
  • there are no good or bad foods

However, I will share:

  • the real body and mind breakdowns that occur (did you know the uterus thins out to almost paper and only thickens once the body is repaired and periods start – just learnt that)
  • how incidious, manipulative, dangerous and all consuming eating disorders are
  • that it is an illness of the mind that affects all genders, cultural and social areas
  • that physical health and healing comes when a varied and wide food range is eaten
  • the long lasting effects of eating disorders are those under the skin: the mind, behaviours, organs, bones, teeth, reproductive system, endocrine system …
  • what research has been done and how much more needs to be done
  • what resources (including financial) are not being funnelled into eating disorder areas
  • how eating disorders affect families and relationships
  • recovery and healing that encompasses all areas of an eating disorder.

I have met some wonderful people who are creating great stuff, from documentaries, short films, very informative and balanced websites. But others still have a lot to learn about eating disorders. These are the ones I want to grow and stretch in their ideas of what an eating disorder is really all about.

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Although everyone doesn’t fit a model, it is a good indication of what you may feel, see or think as you start your recovery process. It helps you know that what you are going through is valid. It also helps you know what is coming next, however long that may be. Remember the journey back is always yours and yours alone – it is never to be compared to anyone else’s journey.

From NEDC website.

Stages of Change Model

The Stages of Change model can be applied to the field of eating disorders to explain why some people may feel more ready than others to introduce changes that lead to recovery from the disorder.There are generally five stages of change that a person with an eating disorder may go through. Everyone is different and some people may pass back and forth between these stages, especially in cases where relapse is common.

This model seeks to understand a person’s motivation towards achieving change and recovery. From a carer perspective, it can also be used to understand how to approach and care for someone with an eating disorder.

Stage 1: Pre-Contemplation

In the Pre-Contemplation stage, a person with an eating disorder will most likely be in denial that there is a problem.

While others around them may have noticed some of the warning signs, the person with the disorder will have little or no awareness of the problems associated with their disordered eating. Instead, they may be focused on controlling their eating patterns.

A person with an eating disorder in this stage may not be willing to change or disclose their behaviour and may be hostile, angry or frustrated when approached. This is because the person’s eating disorder is currently serving as a way to control or avoid strong and unpleasant emotions. The person may be unwilling or afraid to let go of these behaviours.

To approach someone in the Pre-Contemplation stage:

  • Stay calm and try to see things from their point of view
  • Show compassion and understanding
  • Take the focus off their disordered eating; instead, talk about their interests, goals in life and the things they may be missing out on as a result of the eating disorder

Stage 2: Contemplation

A person with an eating disorder in the Contemplation stage will have an awareness of their problems. They may be considering the benefits of changing some of their behaviour.

However, their attitude may also fluctuate between wanting to change and wanting to maintain their disordered eating habits. This can be difficult and confusing, both for the person with the eating disorder and for their loved ones.

You can manage the Contemplation stage by:

  • Encouraging the person to voice their thoughts, feelings and concerns
  • Demonstrating that you are listening to what they are saying and that you understand their struggle. You can even reinforce what they are saying by repeating it back to them; e.g. ‘I hear you saying that part of you feels like you want to change, while another part of you feels scared of changing…’
  • Showing them you respect their ideas, particularly the ones in favour of change
  • Trying to boost their self-esteem and confidence; this will help them believe they can change
  • Letting them know you are pleased that they have shared their feelings with you and that you are willing to support them through the process of change and recovery

Stage 3: Preparation and Determination

In this stage, the person with the eating disorder has decided they want to change their behaviour and is preparing to make these changes in order to recover. This can be a very stressful and anxious time for the person with the disorder, as well as for others who are supporting them. In most cases, help from a doctor, clinician or eating disorder professional is necessary.

As a carer or support person, you can help by:

  • Being informed. Learn as much as you can about the steps you and the person you are caring for need to take in order to recover
  • Working with the person to identify their goals and develop a detailed approach of how you will manage the changes together

Stage 4: Action

A person with an eating disorder in the Action stage will be taking the first steps towards recovery and is focused on completing the recovery process.
They require strong support and encouragement to get through this stage. The person can move backwards and forwards in their development during this stage and relapse can be common.

Supporting someone in the Action stage often means:

  • Acknowledging how difficult it is to change and recover from an eating disorder
  • Supporting the person through challenges and letting them know you believe in them; this will help build their confidence
  • Focusing on the benefits of change, rather than the difficulties in changing; being encouraging and positive
  • Letting the person know that you are willing to support them throughout this stage and that they are not alone
  • If relapse occurs, explain to the person that relapse is normal and common and assist them in coping with the relapse and achieving recovery

 

Stage 5: Maintenance

In the Maintenance stage, a person with an eating disorder will have changed their behaviour and may be focusing on maintaining their new, healthier habits. They are also learning to live without the eating disorder.

This stage takes time and ongoing commitment, both from the person with the disorder and his/her support network. It is still possible for a person with an eating disorder to relapse at this stage. However, full recovery from relapses and recurrences is also entirely possible.

To assist in the Maintenance stage and help prolong recovery:

  • Work together with the person to identify triggers that may impact their recovery
  • Put systems and strategies in place to help avoid relapse
  • Show care, patience and compassion
  • Remain positive about their recovery

 

Eating Disorders: Be Informed

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the front line:

  •  the GP, general medical doctor
  • school/uni nurse or counsellor
  • parents

what are they missing:

  • the truth/facts about eating disorders
  • how serious they are
  • they are not a passing phase or something else
  • you NEED to act immediately, REGARDLESS!

This month we have 5 new inpatients to our children’s ward, one of which is in the intensive care unit. Why, because local doctors don’t react quickly enough, don’t believe, don’t refer onto appropriate care. The young men and women, then end up so ill that they need hospital care.

Worse parents and sufferers have to find through other means, word of mouth, who to see, what to do to find the appropriate medical assistance.

What does it take to get the message through??? Seriously, do local GP’s just bury their heads in the sand or pretend they know everything!!!!!

Someone asked this week on Tumblr, what happened in the years previous before this enlightened age of eating disorder care. I told her the enlightened age has still not come. Too many are still heading for inpatient treatment because no one will act early enough to help them. Too many are still dying.

 

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Many of us have read the story of Bronte Cullis and her struggle with anorexia. Last night on A Current Affair they showed where she is now up to with her life. The Melbourne hospital she was originally admitted to gave up on Bronte and could not treat – she was 16. They expected her to die from anorexia. Her family got her into a Canadian treatment centre, ACA followed Bronte and her family to Canada from Australia and have kept in touch with her since then. Weep with joy in her recovery, her life joys and know that this goal can be yours.

To support this, I and many others have seen the same side of anorexia with our daughters: painfully thin, possessed, very sick and being tube fed. But we now see daughters, further along the recovery road and they do not resemble that sick girl anymore and are choosing life as best they can each day.

As Bronte says, “it is not a choice to get sick, but it is a choice to live and not to die”.

Anorexia recovery

Bronte’s Joy Watch Video

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