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Archive for the ‘Anorexia’ Category

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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Researchers at the UNC School of Medicine found that people with anorexia nervosa have very different microbial communities residing inside their guts compared to healthy individuals and that this bacterial imbalance is associated with some of the psychological symptoms related to the eating disorder.

The findings, published in the journal Psychosomatic Medicine, provide more evidence that the abundance and diversity of the gut microbiota — the trillions of bacteria that affect digestive health and immunity — could also affect the so-called “gut-brain axis.” This research suggests that gut bacteria could play a prominent role in the debilitating symptoms of anorexia nervosa, a serious eating disorder that affects more than 3 million Americans and has the highest mortality rate of any psychological disorder.

“Other studies have linked gut bacteria to weight regulation and behavior,” said Ian Carroll, PhD, senior author of the paper and assistant professor of medicine in the UNC Center for Gastrointestinal Biology and Disease. “Since people with anorexia nervosa exhibit extreme weight dysregulation, we decided to study this relationship further.”

Read full research article at Science Daily.

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Sophie has been home and gone back to uni. Wow 6 weeks at home just flew. It was wonderful having her for so long. She had the usual depression/anxiety drop down during the peak assignment time, but this time didn’t ring me as much. With her new psychologist she handled it herself. Doesn’t mean it was any easier or less deep, but she made her own decisions and didn’t need to vent to me. I see this as a step forward and wait to see how this semester goes.

This post though is about getting sick. It’s winter here, Melbourne has it’s own strong flu variety this year and lots of other nasty bugs. When http://scu.edu.au/staffdirectory/person_detail.php?person=20601you get sick, it’s normal to cut back on eating. You really don’t feel like food, nor sometimes can you keep it down. If you get the viruses with the killer sore throats or Tonsillitis then you have an extra level added to the pain of eating. You might not eat anything decent apart from some light liquids for anything up to 14 days. It’s the nature of being sick that we all follow.

For those recovered or in recovery getting sick needs extra care. If you are at home or still not fully independent, you then have a team or family support to encourage you to eat. The bottom line for those with anorexia, is you DON’T lose weight. But it’s hard to remember that when you really sick, living independently away from home and figure that you can easily gain any weight loss back or it won’t matter, or being so sick it doesn’t even cross your mind you might be losing weight. Or that it might be an issue if you do lose weight.

After all – if you are fully recovered – you won’t have had any Ana behaviour to stop you eating. You won’t have had any Ana thoughts or heard Ana’s voice either. Your well past that. You may even still see a psychologist, take good care of yourself, see a doctor regularly, have medication for anxiety or other mental health issues. So when you get really sick, you tend to do what we all do – eat when or how much as you are able to.

Sophie learnt her next step in self care and staying recovered. She got the flu and Tonsillitis together – one very sick girl. And she did try to eat and drink. However being unable to eat her normal amount for over 2 weeks, her weight dropped. What it brought home to her, was how quickly during sickness the body can drop in weight. And in the case of a recovered anorexic, weight loss to a certain point can start to bring thinking changes.

As she said, she felt physically ok, and wasn’t anywhere in the realm of Ana thoughts, but her mind ‘darkened’, it was easy to slip back into the habit of not eating a meal or eating enough when getting over the sickness. She found herself a bit defensive about food. Thankfully she was home by this stage, so mother got involved (despite the fact she is now 20 and really beyond me dictating food routines). Yep, I can still be the Food Police. But because she doesn’t want to go back down the Ana path, she drank the sustagen, ate pies, bread, raisin toast, pasta, pizza etc etc. She snacked in-between meals and she brought her weight back up. Not quite as high as I’d like to go back to Melbourne, but still in her good weight range.

It’s a confronting lesson when just being sick can result in weight loss you didn’t plan or want, and the extra strength needed to continue to eat. Whilst recovery teams will tell you that this might happen, until it actually does you don’t plan or really know how you will actually react or be when very sick. Sometimes you learn as situations become a reality for you – rather than a textbook experience. Now she knows.

Third week back in Melbourne she has come down with a similar bug and another round of damned Tonsillitis (sensitive little things once they get sick). This time Soph is more knowledgeable and is eating more and drinking sustagen etc. She also is seeing her psychologist and doctor as well. We are also heading down (we couldn’t do it last semester) for a parent check in of how she is going.

The learning curve can be tricky, sneaky and sometimes ‘left of field’ in recovery, but as long as you take note of the lesson and build toward being strong if sickness happens again, then you have learned another step in the reality of self-care. Getting flu vaccine might also be part of the lesson!

 

 

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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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(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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Research is only as good as the questions it is asked to frame. If you want a certain position to back or fund, then unfortunately research is often commissioned for a purpose. The questions asked frame the answer that can helpfully back up your stance. There is too much old research for eating disorders still around and sadly, too much new research focussed on the wrong issues. Eating disorders are biological and genetic based. They are not developed from body image, media, diet, trauma or anything else. These issues are the trigger so to speak. Everything that we are exposed to from birth correlate with our genes and personality and create – basically – the perfect storm. It is easy for anyone to blame any of these issues, as they are the visible ones, the easy ones to blame. They provide a nice and easy solution to fund, research and form campaigns on. However the easy way out is not the right way, nor the future of understanding how eating disorders really do begin. Any of us with a son or daughter with an ED will tell you it is far, far more than these touted issues. There really is a genetic switch that flips, that in many cases you can actually see when it flips.

This new research below (from Douglas Mental Health University Institute Eating Disorders Program (EDP), in Montreal,) is the direction we need to start taking. Pulling apart more and more the brain, chemical, and genetic structure. Another good research piece is also the Swinburne finds this year on anorexia: http://www.swinburne.edu.au/media-centre/news/2015/01/anorexia-study-reveals-abnormal-eye-movements.html

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Montreal, February 7, 2015 – A study led by Howard Steiger, PhD, head of the Douglas Mental Health University Institute Eating Disorders Program (EDP), in Montreal, in collaboration with Linda Booij, a researcher with Sainte-Justine Hospital and an assistant professor at Queen’s University, is the first to observe effects suggesting that the longer one suffers from active anorexia nervosa (AN), the more likely they are to show disorder-relevant alterations in DNA methylation.

When methylation is altered, gene expression is also altered, and when gene expression is altered, the expression of traits that are controlled by those genes is also changed. In other words, altered methylation can produce changes in emotional reactions, physiological functions and behaviors. A report to be published in the International Journal of Eating Disorders, entitled “DNA methylation in individuals with Anorexia Nervosa and in matched normal-eater controls: A genome-wide study,” is showing chronicity of illness in women with AN to be associated with more pronounced alteration of methylation levels in genes implicated in anxiety, social behavior, various brain and nervous system functions, immunity, and the functioning of peripheral organs.

“These findings help clarify the point that eating disorders are not about superficial body image concerns or the result of bad parenting. They represent real biological effects of environmental impacts in affected people, which then get locked in by too much dieting,” says Dr. Steiger, Chief of the Eating Disorders Program at the Douglas Institute and a professor of Psychiatry at McGill University.

“We already know that eating disorders, once established, have a tendency to become more and more entrenched over time. These findings point to physical mechanisms acting upon physiological and nervous system functions throughout the body that may underlie many of the effects of chronicity. All in all, they point to the importance of enabling people to get effective treatments as early in the disorder process as possible,” adds Dr. Steiger.

Exploring crucial questions

The results of this work imply that epigenetic mechanisms may underlie some of the consequences of anorexia nervosa that affect nervous system functioning, psychological status and physical health. If so, an intriguing possibility arises: Does remission of anorexic symptoms coincide with normalization (or resetting) of methylation levels (and could such effects provide clues to more effective treatments)? Current work at the Eating Disorders Program at the Douglas Institute is oriented toward exploring exactly this question.

 

http://www.eurekalert.org/pub_releases/2015-02/dmhu-an020615.php

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