Severe and Enduring Eating Disorders - Another Look

Update:  August 28, 2019
In addition to adding a section on case management and a link to a Team Approach, I have also updated the HIPAA document.   This document explores elements of the full-range of possibilities.   I am attempting to keep this document parent/family oriented or even parent/family/patient oriented rather than clinician oriented.  Early on several adults diagnosed with eating disorders accessed my blog and remarked upon it.  This document is for them, as well.


Overview:  More attention is being paid to adults diagnosed with eating disorders who now are living with chronic illness.  This post takes a look at this development, relevant publications and our family's journey with the goal of providing information for others.

It should be noted that, in general, many with eating disorders whose illness becomes entrenched are also dealing with multiple diagnoses such as depression, anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance abuse and become addicted because no pill exists (yet) to stop the disease.   All aspects need to be treated concurrently.  They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!) and therefore have given up on treatment, regarding themselves as failures.  They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or short term hospitalizations over many years to stabilize.  And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level too soon.  Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized and instead, the person demands to be discharged thereby potentially and usually losing the ground they gained while hospitalized.   As a consequence they have many times become poorly motivated, socially isolated, chronically ill, are filled with despair, lack trust that anything might work and have carried on this way for more than 10 or more years.

Anorexia carries the highest death rate of any mental illness.

Where the concept of SEED began:  Several years ago I came across a book authored by Dr. Paul Robinson titled Severe and Enduring Eating Disorder (SEED) - Management of Complex Presentations of Anorexia and Bulimia Nervosa (John Wiley and Sons, 2009).  Because my family member (referred to as FM) at that point had been struggling with anorexia subtype bulimia for about twenty years, I bought it.  FM had just completed yet another course of treatment (this time for more than six months!) and immediately, upon release at a weight, again, above FM's comfort level, stopped eating and over the following year returned to a dangerous pre-admission weight.  I was overwhelmed by despair but held on to the hope that something might be done to interfere with the insidious control of the eating disorder.  Few in the field were focusing on people with a severe long-term eating disorder; in fact, one might justifiably state that they were being neglected, and myths as well as misconceptions  about eating disorders continued to circulate.

Instead, and understandably so, the emphasis was and continues to be on early diagnosis and immediate treatment with the goal of returning the individual to a full, recovered life.  Yet, few understood what eating disorders were all about.

During a relatively short period of time since 2010-11, much has been accomplished in the fields of for example neurobiology, biology/genetics, nutrition and psychiatric care and a plethora of journal articles and books has been published, conferences for both researchers and parents/families/individuals have been held, the internet has helped to speed up the process of dissemination and many more individuals and their families have managed to overwhelm the disease process through early diagnosis and treatment including Family Based Treatment (FBT).

Robinson's book was an excellent first step and remarkably (in the sense of deserving high praise) contains detailed explanations and suggestions re how to treat people who have had the diagnosis of an eating disorder for a very long time.  Dr. Robinson notes that he was the person to coin the classification "Severe and Enduring Eating Disorder" or "SEED" in 2006.  He wrote (p 5) "We have two groups of patients therefore, the acutely ill young patient with a short history of Anorexia Nervosa and not much else and the chronically ill patient with a long history of Anorexia Nervosa with physical, psychological and social complications.  The acronym SEED applies only to the latter."

The Table of Contents partially explains this book's importance to the field and Robinson investigates the topics at length while using patient cases to illustrate his points.

1. Introduction
2. SEED, Psychiatric Considerations
3. Medical Aspects of SEED [this is comprehensive]
4. Social and Occupational Aspects of SEED
5. Family life with SEED
6. Care Programming in SEED [immensely valuable discussion re the role of case management]
7. A Pilot Case Series Using Qualitative and Quantitative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder (Anorexia Nervosa)
8. A Comparison between SEED and Chronic Schizophrenia [to be clear, the point of this chapter is to "use the extensive experience gained in the development of the rehabilitation field in schizophrenia and begin to appy it to SEED" - a remarkable and important step to inspire hope, I think.]
9.  Research Ideas - [this chapter is amazing and includes long lists of ideas to look at related to each chapter discussion and includes a suggestion for a symposium, as well.  The section on care or Care Program Approach - CPA - is quite useful.]

Our Family's Experience:  In retrospect, FM finally had had the advantage of a multifaceted team [there is a link to a post about team composition and roles later in this post] from one of the mental health services here that addressed many of these points and wonderfully, at the same time, the team was  welcomed by the residential treatment centers (2009 and beyond except for the State hospital in 2012) at which FM was a patient so all could work together to overcome FM's already entrenched behaviors.  I wrote of my experiences and of the knowledge I had gained in posts here on my blog (and have continued to update them).

In 2015, after FM once in 2012 had been court ordered and placed for almost a year in the state hospital as a last gasp measure to literally keep FM alive and from which FM emerged having gained enough weight to take advantage of services but over the next two years and ongoing has been unwilling to do so, I came across the open access  editorial/article written by Drs. Stephen Touyz and Phillipa Hay titled "Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm" that appeared in the Journal of Eating Disorders (2015) 3:26.  The authors note, "We need to rethink our treatment strategies by drawing upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong with them'." 

I also attended a conference on eating disorders at UCSD in 2016  (also described in a post listed in the Index) that brought me up to date on much of the research being done and new avenues of therapy.  I shared much of this information with the lead doctor at the time (who was very knowledgeable about eating disorders) at University Medical Center Banner Behavioral Health South and with FM's mental health service psychiatrist, as well.

Since then, also in 2016, I took on the role of Court Appointed Legal Guardian with mental health authority on the advice of FM's team psychiatrist in order to help FM with FM's desire to sustain life and have worked closely with the psychiatrist and with FM's PCP in order to do that.  My previous post re Emergency Department visits reflects only part of this journey.  I have never lost the sense of hope.  This effort has been all-consuming yet from a carer perspective, I've also steadily sought the help of a therapist who has coached me to seek outside activities and to maintain healthy relationships with others including my husband, extended family, and friends.  Her assistance has been exemplary.  Here's a link to ideas for self-care.

FEAST SEED Focus:  Not one to give up, on March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City.  Several presenters at ICED came to provide summaries of their presentations.  During the discussion, the concept of severe and enduring eating disorders was discussed and I offered to initiate a discussion that will hopefully generate a usable body of knowledge - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  This project is now underway and I have contributed this post.  There hopefully will be a link to stories written by family members and those either in recovery or working towards recovery.  I am unable to participate in this project at this time because my family member again is losing ground because she again was discharged too soon at too low a weight.

Having read several papers, I am arbitrarily suggesting that a long time (enduring) be defined as more than 10 years of ongoing treatment.  Others suggest 7 years.  I began my blogging at the marker of 20 years in FM's case.  As is outlined in the first paper of Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide (see below for the reference) titled "What Do We Know About Severe and Enduring Anorexia?" by Anna C. Ciao, Erin C. Accurso, and Stephen A. Wonderlich, defining SE-AN or SE-ED continues to be an issue.

Blog Linked Resources re Anorexia in Adults:  Here are some resources with suggestions to continue that conversation building on what I have posted on my blog previously and learned as time has gone on (and provided links to above and in the Index of my Posts).   I recommend a look at:
First Steps if you suspect your loved one has an eating disorder;
Tips for Parents of Adults with an ED; and
Team Approach - A suggested way to keep recovery going. This provides the reader with suggestions for team members.
You may also find the post Financial: how/where to get help to pay for treatment helpful as well as the posts about a
recovery coach  and, importantly,
HIPAA and your right to call your loved one's treatment provider, ask to speak with her/him and state you would like to share what you believe is important information about your loved one.  More details are in the HIPAA document.

As I have noted on my blog, "This site is only for informational purposes.  Posts do not represent medical advice.  Readers should not base any personal medical decision on information posted on this site.  Any health concerns should be discussed with your personal physician, psychiatrist, or therapist."

Recently Dr. Jennifer L. Gaudiani published her book Sick Enough: A guide to the Medical Complications of Eating Disorders (Routledge, 2019).  From the book's cover:  "Patients with eating disorders frequently feel that they aren't "sick enough" to merit treatment, despite medical problems that are both measurable and unmeasurable.  They may struggle to accept rest, nutrition, and a team to help them move toward recovery.  Sick Enough offers patients, their families, and clinicians a comprehensive, accessible review of the medical issues that arise from eating disorders by bringing relatable case presentations and a scientifically sound, engaging style to the topic.  Using metaphor and patient-centered language, Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture.  Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders...." 

FM and FM's PCP at El Rio Medical Center have read this book cover to cover.  I learned last week that others within the PCP's extensive practice are also reading it.  I have distributed copies of this book to the local Tucson  Crisis Response  Center, to social workers and psychiatrists at University Medical Center Banner South campus and to all members FM's treatment team. 

I believe this book should be required reading as part of the curriculum for all medical students, especially those who go on to psychiatric practice, for this knowledge and what goes on in the minds of those with eating disorders is not understood by many in the field here in Tucson nor is adequate treatment available here, either, especially for those with long-term eating disorders.

In addition, BioMed Central provided, in 2017, open access to several articles relevant to the discussion of SEED.  These include the original editorial written by Dr. Stephen Touyz and Phillipa Hay mentioned above and linked in the "Of Note" section of my blog and also articles and reviews titled (see the link also in the "of Note" section for full acknowledgements) Examining a staging model for anorexia nervosa: empirical exploration of a four stage model of severity; Applying neurobiology to the treatment of adults with anorexia nervosa;  Neurobiological Model of the persistence of anorexia nervosa, Case Management at an outpatient unit for severe and enduring eating disorder patients at Stockholm Centre for Eating Disorders - a study protocol; Avoid hospitalization for severe and enduring anorexia nervosa by personalizing your care; Listening in the dark: why we need stories of people living with severe and enduring anorexia nervosa; Predictors of therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa.  

One of our keynote presenters during the F.E.A.S.T. of Knowledge conference in March 2019 was Laura Hill. Ph.D., LLC, Assistant Clinical Professor, Department of Psychiatry, The Ohio State University, and formerly with the Center for Balanced Living.  The research article "Applying Neurobiology to the treatment of adults with anorexia nervosa" that she co-authored with Stephanie Knatz Peck, Christina E. Wierenga and Walter H. Kaye (also present at the conference) describes the treatment written about by Carrie Arnold titled and linked here  "Treatment for Adults: A Grown-up approach to treating anorexia."

Neurobiological Approach: While the concept of staging I believe is beneficial for the overall understanding of eating disorders, I believe family members may be looking for more specific tools and the why behind the tools.   Using neurobiological descriptions to explain treatment, the role and value of case management, the role and value of treatment modalities, and discussions about how to increase trust and build a therapeutic alliance between and among a person's team members would seem of great value not only to the patient and his/her family members but also to the team members as well as professionals treating the person in a medical and/or psychiatric setting.

The neurobiological aspects of eating disorders are being researched heavily.  We have learned that the brain can learn new behaviors - literally rewire to shift neural pathways that are sort of like roads in the brain leading to certain behaviors.  The goal is to override learned habits and substitute new ones.   This can be done!!!!!

In May of this year, Tabitha Farrar published a second book titled Neural Rewiring for Eating Disorder Recover: for real and meaningful mental freedom.  See below regarding her first book along with a link to her blog.  She is a recovery coach.  I personally endorse this book because I know from my own recovery experience that re-wiring as she explains the process is critical to recovery.  Re-nourishment is only part of the process and re-wiring takes longer.

Care Planning:  Robinson addresses "Care Planning" [Chapter 6, p. 95].  His view of  a "care manager" and their role is very important.  I address this at length at this link.  This role can be filled by a parent, especially for those working with a therapist trained in FBT, who continue to have the energy and are building knowledge about eating disorders and how to help their loved one get into recovery.  For adults diagnosed with a long-term eating disorder and for their family members, I am recommending that they and  those in the field of eating disorders as well as insurance companies explore the possibility of hiring (and having insurance pay for) a professional case manager, perhaps one who is a psychiatric social worker with extensive clinical eating disorder training.  Those of us, like myself, who are now in their late 60's or 70's, may need help.

Palliative Care:  Sometimes, especially when our loved ones adamantly quit trying, the subject  of palliative care comes up.  As Allan S. Kaplan and Amy Miles note in their paper titled "The Role of Palliative Care in Severe and Enduring Anorexia Nervosa" published in the Touyz, Le Grange, Lacy and Hay volume, Section 14, it is important to get beyond the early definition and to this instead:  "...However, as the palliative care movement has developed, so too has its scope.  As conceived today, palliative care encompasses the provision of multimodal, highly personalized treatment designed to improve quality of life when symptom-based approaches have proved ineffective or otherwise undesirable."  Some are learning to live with their illness rather than continue to fight it.
Also take a look at the article "Eating Disorders and Palliative Care" linked below in the resources section.

Dr. Gaudiani, in Part V - Specific Populations also brings relevant discussions to this conversation about SEED with the topics, "Older Patients","Substance Use Disorder", and, critically, "Caring for the Patient Who Declines Treatment: The Spectrum from Mandated treatment to Hospice Care "(pp. 220-242).

As a skilled therapist once told me, "Hope for the best yet prepare for the worst."  Remember, some have recovered.  It is possible.

On that note, Managing Severe and Enduring Anorexia Nervosa - a Clinician's Guide includes, Document 17 pp. 273-285, an essay by June Alexander who introduces herself by saying "I regained by self from anorexia nervosa (AN) in 2006, 44 years after developing the illness.  My story adds to the pile of evidence that recovery can be achieved at any age...."

Resources listed include:

Sick Enough: A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani, MD, CEDS, FAED, Routledge, NY, 2019

Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide edited by Stephen Touyz, Daniel Le Grange, J. Hubert Lacy and Phillipa Hay (Routledge, 2016)

"Eating Disorders and Palliative Care" by Patricia Westmoreland, MD and Philip S. Mehler, MC, FACP, FAED, CEDS published in the Gurze-Salucore Eating Disorders Resource Catalogue, January 27, 2019.

Tabitha Farrar, a recovery coach, has recently published Rehabilitate, Rewire, Recover! - Anorexia recovery for the determined adult.  I am reading this now.  For more information about Tabitha Farrar, her coaching, her valuable podcasts, and her book go to this link.  As noted above, she has just published a second much shorter book titled Neural Rewiring for Eating Disorder Recovery: for real and meaningful mental freedom.  This is not a quick fix.  The process takes work.

Kathryn Hansen published Brain Over Binge - Why I was Bulimic, Why Conventional Therapy Didn't Work, and How I Recovered for Good.  I discovered this book while taking a psychology course offered by the University of Arizona's Humanities Series that included neurobiological aspects of the brain.  Since I, too, am in recovery for more than 40 years from anorexia/bulimia, I read the book and believe it offers a possible useful course of action for some mired in this diagnosis.  Here's a link to a review I wrote.

And, remember, Food is Medicine.  The recent (Routledge, 2018) book How to Nourish Your Child Through an Eating Disorder - A Simple, Plate-by-Plate Approach to Rebuilding a Healthy Relationship with Food by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD will help.  FM who has had countless sessions with nutritionists over the years has been using and recommends this volume.

This post will continue to include newly discovered resources and other contacts.

Treatment for Adults: A Grown-Up Approach to Treating Anorexia by Carrie Arnold published in Mosaic Science 3/29/2016

I am very excited to share this article that was published today by Mosaic Science (3/29/2016) along with the ability and HTML text to republish it here. By going to the link I have provided above, readers can also pick up the article, share it on Facebook,  email it to friends and colleagues and even email it to their favorite publications. Finding appropriate treatment for an adult with anorexia is difficult. Getting it is even harder. So much information is in here including historical background, the latest understanding about this disorder, what happens in the brain of those with this disorder, how this disease affects the behavior of those with this disorder, and so forth. Embedded in the article are important links including Carrie Arnold's personal experience with anorexia (How I Manage My Eating Disorder). Carrie Arnold reveals what I, as a person who is in recovery from anorexia (first) and bulimia (later) for more than almost 40 years know: that is, the tendencies continue to be there due to genetics and environmental triggers. Understanding what is going on is an important clue and motivator to want to pursue recovery. This article by Carrie Arnold and the work of Dr. Walter Kaye and Laura Hill, PhD, opens that door.

************

Heather Purdin had run out of options. Aged 33, she had been suffering from anorexia nervosa for more than two decades and her weight had plummeted to that of a small child, an all-time low for her. Her case worker, out of frustration and desperation, suggested hospice care as a way to spend her remaining days in relative comfort. But for the first time in years, Heather was sure of one thing: she desperately wanted to live.

Treating anorexia, which is characterised by self-starvation and an inability to maintain an adequate body weight, seems absurdly simple on the surface: just eat and gain weight. It’s something Heather and the millions of others afflicted by eating disorders have heard countless times. The problem is that it’s never that simple. Heather has long since lost track of the number of times she has been admitted to hospital for low body weight, electrolyte imbalances caused by starvation or self-induced vomiting, or thoughts of suicide. In hospital she gains weight, but as soon as she is discharged she promptly returns to her old ways and loses what little weight she has gained. And so for more than 20 years, she has remained hopelessly, incurably, stuck.

Up to one in five people with chronic anorexia may die as a result of their illness, either due to the direct effects of starvation and malnutrition or due to suicide, making it the deadliest of all psychiatric disorders. Although scientists have made tremendous progress in decoding the underlying biology of eating disorders and in finding ways to intervene in cases of teenage anorexia before the disorder becomes chronic, this hasn’t translated into effective treatments for adults like Heather.

A chance posting on Facebook last fall, however, brought Heather the first breath of hope she had felt in years. In Ohio, there was an experimental five-day intensive programme to help adults with anorexia. What made this one different was that it used the latest neurobiology research to mould its goals as well as how its treatment was delivered. And since research confirms that most patients struggle to make changes to their entrenched behaviours on their own, patients also had to invite up to four support people to join them on the residential programme. Heather asked her father and her sister, and began raising the funds to fly them all to Ohio.

“I need this to work,” she said. “I have nothing else to try.”

Despite its reputation as a quintessentially modern disorder, anorexia is nothing new. Historians believe that many of the ‘fasting saints’ of the Middle Ages had anorexia. The first medical report of the illness appeared in 1689, written by London physician Richard Morton, who described it as “a Nervous Consumption” caused by “Sadness and anxious Cares”.

Even as recently as the 1970s, anorexia remained something of a clinical oddity – a disease that doctors rarely saw, let alone had a clue how to treat. When psychologist Laura Hill saw her first anorexia patient at a university counselling centre back in 1979, she had never even heard of the disorder: “Her father was in the science department there and I had to ask him what anorexia was,” recalls Hill. “He told me she was unable to gain weight, afraid of food.”

Rates of anorexia had been steadily climbing since the 1950s, but it wasn’t until the death of singer Karen Carpenter in 1983 that the disorder became a household word. She died from heart failure due to anorexia nervosa, and all of a sudden newspaper stories and after-school TV specials began to feature teenage girls “dying to be thin”. Besides highlighting the spectacle of a healthy, attractive young girl’s determination to starve herself, the storylines usually focused on the family dysfunction that psychologists believed lay at the heart of the disorder. Parents were told not to be the food police, that anorexia was a misguided search for control. Only when they let their child be fully in control of their own life would the anorexia resolve.

Psychiatrist Walter Kaye wasn’t convinced. Despite not having done research into eating disorders before, he had been asked to help finish an anorexia study for the US National Institutes of Health in the early 1980s. While talking with the participants, he noticed something unusual.

“I was just kind of struck by how homogenous the symptoms were,” he says. Because the patients seemed so similar in terms of symptoms and temperament, he believed there had to be something in their biology that was causing anorexia – and he dedicated himself to finding out what it was.
In the early 1980s, anorexia had been seen by the medical community as a deliberate decision by a petulant teenage girl: she was selfish, vain, wilful. Since she had chosen to become ill, she simply needed to choose to get better. She needed to become a fully formed individual, to separate from her family and rebel against the cultural ideal of thinness at all costs.

How I manage my eating disorder

Scientific research by Kaye and others, however, exploded every aspect of this stereotype (not least that anorexia only affects girls) and completely changed how we think about the condition. Psychologists like Laura Hill had to rethink their whole approach: “Many times, I want to call up all my old patients and apologise for getting so much backwards,” she says.

Hill began to keep a file full of notes about what she thought was causing anorexia, what her patients believed, what seemed to work and what didn’t. After a few years, she entered a PhD programme to better help her patients. But even with several research articles to her name and, ultimately, decades working at the forefront of treating and researching eating disorders, she realised that the treatment advances weren’t reaching adults with anorexia. She wasn’t the only one. Across the field, psychologists, psychiatrists and dietitians have noted that treatment outcomes for adults with anorexia remain abysmally low. Less than half recover fully, another third show some improvement, but the rest remain chronically ill.

“They go for many years, and they’ve relapsed over and over again, and they have the highest risk of dying,” says Kaye. “I think all of us are feeling that this is a serious, often deadly disorder for these people, and we don’t have good approaches, and we don’t understand enough about the causes.”

For adolescents with anorexia, a ground-breaking treatment developed at the Maudsley Hospital in London in the 1980s called family-based treatment (FBT) has significantly improved short-term recovery outcomes. It puts parents temporarily in charge of making food and exercise decisions for their child and places a priority on normalising weight and eating habits. In a randomised clinical trial published in 2010, around half of teens treated with FBT met criteria for full recovery after a year, compared to 23 per cent of teens receiving standard treatment.

Nothing has been remotely that successful for adults with anorexia, and there’s no easy explanation as to why. One reason may be that adults have simply been sicker for longer, says Angela Guarda, Director of the Eating Disorders Program at Johns Hopkins University: “The longer you have anorexia, the more anorexia creates physiological changes in the body and the brain that then create a self-sustaining cycle. You do it today because you did it yesterday, no longer because you decided to go on the Atkins diet when you were 15 or because your coach said something to you or you broke up with a boyfriend and you decided to lose weight. It’s no longer about that.”

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As well, many people with anorexia don’t grasp that they are, in fact, sick. While parents generally sign their children into treatment, that power vanishes when the child turns 18. Adult patients can also stop treatment if it gets too difficult – and it often does, because challenging the behaviours associated with eating disorders can create tidal waves of anxiety. A long-term, chronic eating disorder often ends up alienating friends and family, the very people who tend to push their ill loved one into treatment and support them through the recovery process.

Clinicians, like their patients, are desperate for something better, some way not only to help adults with anorexia normalise their eating and gain weight, but also to help them stay well. “In anorexia, you get their weight up and they go home straight from inpatient [where] they’re fed from a tray, and they’re expected to know how to eat in a restaurant, eat in a cafeteria, eat in social settings, when they haven’t been eating with anyone for a decade,” Guarda says.

On a warm spring weekend in 2006, Laura Hill stopped in the middle of mowing her lawn. She had spent the morning reading one of Walter Kaye’s articles on the neurobiology of anorexia, and was familiar with how Kaye and his colleague Stephanie Knatz were beginning to use neurobiology in designing new treatments for adolescents. It occurred to Hill that she could do something similar for her adult patients.

She dashed inside to grab a pad of paper and a pencil, where she scribbled a few notes before returning to her lawn. Several passes later, she had another insight and again stopped mowing to add to her notes. This went on all afternoon. It took until dusk to finish the mowing, but by then, as well as a neatly cut lawn, Hill also had the outline of a new type of adult anorexia treatment that would harness the strengths of people with the disorder and try to compensate for their weaknesses.

She continued to work on the outline, asking her patients at the Center for Balanced Living in Ohio for input on what they found helpful. A few years later, she teamed up with Kaye and Knatz, who further refined the idea based on their experiences at the University of California, San Diego. There, they had had remarkable success with a five-day intensive FBT programme for adolescents. Rather than seeing someone once a week, which might not be enough to be effective, or taking them away from their family and putting them in an artificial environment for a residential programme, they had insisted that the family come and stay too. Encouragingly, some young adults – living at home or supported by their parents – had also taken part, suggesting that this format could work with an older crowd as well.

“As opposed to having people step in for an hour and talk about what happened over the week, we’re actually seeing what happens live, in vivo. That gives us the possibility to intervene in vivo, as opposed to coaching people on what they should do ‘when circumstances come up’,” says Knatz.

In 2013, Hill, Knatz and Kaye applied for a grant from the US National Eating Disorders Association to fund a pilot study of what they called Neurobiologically Enhanced With Family/Friends Eating Disorder Trait Response (NEW FED TR). Every aspect of the programme was based on what researchers understood about what happens in the brain of someone with anorexia, the goal being not just to improve treatment but also to reduce blame and guilt among sufferers and families. To that end, NEW FED TR would involve care givers and loved ones as an integral part of treatment, creating a team that could work to fight the eating disorder together. Responsibility for recovery would remain firmly in each client’s hands, but some aspects of recovery that tend to be sticking points for adults with anorexia could be outsourced to their support people as needed.

On an unusually mild Monday morning in December 2015, Heather Purdin was fiddling with the ponytail securing her dark brown hair, just as she always does when she’s nervous. It was a short drive from the hotel, across the freeway interchange to the back of a wooded business park. Her body mass index (BMI) was very low now – all muscle and softness stripped from her body, leaving only sinew and bone. A baggy shirt and scarf couldn’t conceal how ill she was. But she was not on her way to a hospital or a hospice. Flanked by her father, sister and best friend, she entered the Center for Balanced Living to take her place on the successfully funded pilot of the NEW FED TR programme. And despite all her fears, a giant grin lit up her face.

It looks like any other kitchen. Long, grey countertops line one wall and an island; there’s a large stove, a sink and a fridge. Beau Barley, a tall, thin 20-year-old with bleached blond hair and a two-day-old beard, is cooking an omelette for breakfast while his parents prepare their own meals. It could be breakfast at any home in America, except that Beau is at the Center for Balanced Living, on his second day of the NEW FED TR programme.

“Okay, clients, check in with your supports to make sure you’ve got enough to eat,” calls the programme’s dietitian, Sonja Stotz. She listens in as Beau shows his meal of eggs, toast, butter, milk and fruit to his parents.

Like around half of those with anorexia, Beau suffered from obsessive–compulsive disorder (OCD) as a child, having to turn off lights in a certain way and avoid all the cracks on the sidewalk. Every time he heard a siren, he had to call his mom because he thought she had been in an accident because he didn’t do one of his rituals right.

Always sporty, his anorexia started with a simple desire to be a better runner on his high school cross-country team. He amped up his mileage, running longer and longer each day and eventually training year-round. The sport he loved became a compulsion. But overtraining eventually took a toll and he was sidelined by a severe stress fracture. His only thought as his leg was being X-rayed in the hospital was that he needed to cut back on his food if he wanted to stay in shape for next season. As his mother pushed him out of the emergency room in a wheelchair, she asked him what he wanted for dinner. “A salad,” he replied.

From there, Beau became more and more obsessed with eating ‘healthy’ and returning to running. At first, his weight was stable. But as his running obsession returned, his metabolism kicked in. Always somewhat slender, his weight plummeted. In the summer before he started university, he went through his first formal treatment programme at the Center for Balanced Living, attending group therapy during the day, eating his meals at the centre and returning home every night. Things started to look up, but Beau relapsed during his first year at university. Over the past summer and fall, he has tried to make progress against his eating disorder, but the exercise compulsion is cemented in place. When his mother called the centre to see if he could return, they recommended NEW FED TR. Beau eagerly signed up and now here he is, showing his parents what he has cooked for himself this morning.

“Are those all your exchanges?” his mother asks. NEW FED TR uses a meal plan that assigns each individual a certain number of choices or ‘exchanges’ from each food group for every meal and snack.

He indicates that it is, telling her how the food on his plate adds up to his prescribed meal. Satisfied with his choices, Stotz moves on to assist one of the three other families in the kitchen. Beau’s family sit down at the table and, as breakfast begins, Hill and Stotz suggest fun games to play as a distraction, to decrease the anxiety all of the clients feel around eating. The less anxiety they feel, the more likely they are to successfully complete the meal, which serves as their medication.
Stotz points out that her job is selling her patients on the idea that they need to eat more and exercise less, the very opposite of what most dietitians do. “I should go into sales,” she laughs.

In the morning sessions, Hill gives the clients and their families a crash course on eating disorder neurobiology. Eating disorders typically begin in adolescence, and anorexia is no different. Although the exact circumstances that trigger the onset of anorexia aren’t clear, nearly all cases begin when a person fails to meet their energy needs, placing them in a state of what researchers call negative energy balance – burning more calories than they eat. For some, a weight-loss diet precipitates the eating disorder; for others, it’s increased sports training, a growth spurt, an illness, decreased appetite from stress, even new braces.

For most people, being in a negative energy balance is profoundly uncomfortable. That’s why dieting often makes people impulsive and cranky, ‘hangry’ even. But those with a predisposition for anorexia have a completely different experience. Starvation makes them feel better.

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Kaye’s work with women who have recovered from anorexia nervosa found unusually high levels of the neurotransmitter serotonin in the cerebrospinal fluid that bathes the brain, and he believes these levels were likely also present before the onset of anorexia. Although low serotonin levels are linked to depression, high serotonin levels aren’t good either, as they create a state of chronic anxiety and irritability. As many as three-quarters of those with anorexia had suffered from an anxiety disorder before their eating disorder began, most commonly social anxiety and OCD. It is this anxiety that Kaye believes makes some people much more vulnerable to anorexia.

The body synthesises serotonin from the amino acid tryptophan, which we get from our diet. Eat less food and you get less tryptophan and hence less serotonin. For people predisposed to anorexia, therefore, starvation reduces the anxiety and irritability associated with their high serotonin levels. Mission accomplished, or so it seems. The problem is that the brain fights back, increasing the number of receptors for serotonin to wring every last drop out of the neurotransmitter that is there. This increased sensitivity means that the old negative feelings return, which drives the person to cut back even more on what they’re eating. Any attempts to return to normal eating patterns wind up flooding the hypersensitive brain with a surge of serotonin, creating panic, rage and emotional instability. Anorexia has, in effect, locked itself into place.

Heather Purdin and her team see this first-hand as Hill asks the different groups of clients and supports to use yarn, taken from Hill’s massive collection of weaving supplies, to wind the client’s hands into place. Heather’s team rapidly pin her hands and arms in front of her face. This, Hill says, is the anorexia in action. Heather is now as stuck physically as she is mentally. Getting her functioning again means weaving her supports into her mental ‘loom’. Here is where the team struggle, especially when Hill asks Heather what she is going to do differently. In sheer frustration, she slams her knotted hands onto the table in front of her
.
“It’s not working,” she wails. “I can’t change.”

The tears start and it doesn’t seem they will ever stop. It is, however, her lightbulb moment.
“I realised I wasn’t completely crazy,” Heather says later. “It was a huge relief. It is real and I’m not making it up and I’m not a complete loser.”

Recovering from anorexia, Hill says, is like learning to navigate around landmines. They can be deadly, and they can derail recovery. One of the biggest struggles for people with anorexia is making decisions: a first-year university student on the programme, who asked not to be named, admits that she can stand in front of the fridge for hours trying to decide what to have for lunch. Frustrated, she often shuts the door without eating anything.

Hill rounds everyone up and asks them to toss their treatment binders into the centre of the room. One by one, the clients are asked to close their eyes and walk across the room without bumping into anything. Not surprisingly, no one can do it. But when they ask a family member to guide them, they get safely to the other side. In real life, this could mean the university student asking one of her parents to pack her lunch for her if she becomes too anxious to make a healthy decision.

“People with eating disorders have many amazing qualities, and like anything it has both positives and negatives,” says Hill. The goal of the programme is to make these traits work for an individual as much as possible, and to enlist loved ones to fill in for the parts of the brain that might not be working properly.

The exact details of this are hammered out by each family throughout the week in the Recovery Support Agreement. Skipping meals or snacks or not gaining weight as appropriate could result in consequences that are agreed in advance, like leaving university or eating more meals with supports.
“It’s helpful for people with anorexia because they like rules, they like structure, they don’t like the unknown, so they have a pretty good idea of what’s going to happen if they’re not able to eat and gain weight. And our data is suggesting that may be a useful approach,” says Kaye.

A 2003 study identified five personality traits that increased the risk of developing an eating disorder: perfectionism, inflexibility, having to follow the rules, excessive doubt and caution, and a drive for order and symmetry. Other studies have found links between anxiety, perfectionism and anorexia. Adults with anorexia get stuck on details and have trouble zooming out to see the big picture, which can make it difficult to make decisions. As well, they have difficulty mentally switching from one task to the next.

For too long, says Hill, eating disorder professionals have been focusing on these traits as weaknesses when that’s not true. To succeed at scientific research, for instance, obsessionality and attention to detail is almost a must. Since people with anorexia use rules and routines to ‘succeed’ at their eating disorder, they can also learn to use them to succeed at recovery. It sounds like a small shift, but for anorexia sufferers like Heather and Beau, it makes all the difference in the world.

“Make your quirks work,” Heather quips with a smile.

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“Ew, don’t eat that,” says the mother of the first-year university student. She isn’t providing feedback at mealtime now but playing the role of the insula, a region of the brain that is sensitive to disgust. Other participants role-play other regions in a re-enactment of how the brain makes decisions around food.

In healthy individuals, determining what and how much to eat is controlled by a variety of factors, including what’s available, how much it’s liked and how hungry the person is. Not so in anorexia. Kaye’s work using functional magnetic resonance imaging (fMRI) of the brain has teased out other important details. Unlike most people, whose brains respond strongly to rewarding things such as sweets, people with anorexia are generally far more sensitive to punishment (the removal of something pleasant) than reward.

Another study found that the brains of women who had recovered from anorexia responded significantly less to sugar water than healthy controls, and they found sweets less rewarding when hungry. Kaye says these results may indicate how they are able to continue starving even while food is plentiful, since people with anorexia find food less rewarding and thus have less motivation to eat. Tests also showed a preoccupation with future harm at the expense of what might be needed in the present moment.

“One reason that people with anorexia are able to starve themselves is that when they get hungry, the parts of the brain that should be driving reward and motivation just aren’t getting activated,” he says.
So when it’s time to role-play the ‘anorexia brain’ considering whether or not to take a bite of banana, those people playing brain regions responsible for reward (the feeling of ‘yum!’ when you eat a piece of chocolate cake) are quiet, while the brain areas responsible for worry kick into overdrive. The result is that no one in the room can hear the small, quiet part of the brain telling the person with anorexia it is okay to eat the banana.

Hill plays an audio recording of one of her former patients re-enacting the anorexic thoughts that tormented her while she ate – it is an endless stream of “I can’t eat this. I’m going to get fat. I’m ugly. I’m disgusting. I’m weak. I hate myself. I can’t do this. I’m so pathetic, just pathetic, a weak pig.” It goes on for more than ten minutes.

Parents, many of whom had walked into the programme frustrated and angry at their child’s seeming refusal to eat, hear the recording and the sheer amount of ‘noise’ that their children endure and their anger dissipates.

“I get it now,” Beau’s mom says, dabbing at her eyes with a tissue. “I get it.”

Heather’s week at the NEW FED TR programme has been life-altering: “For the first time, someone got what I had been saying all along, that I had a biologically based brain disorder,” she says. “They worked with me instead of against me.”

By December 2015, nearly 25 families had participated in NEW FED TR, and more pilot groups are in the works. Feedback, Hill says, has been uniformly positive, even from those with anorexia – pretty rare for a treatment programme that requires a person to face their deepest fears six times a day, eating three meals and three snacks. It’s too soon to say whether the programme has been effective in helping adult anorexia sufferers move towards recovery, but for Heather it marks the first time she has actually believed in her own ability to get better.

For the first time in 20 years, she says simply, “I have hope.” And with that, she heads to Trader Joe’s to buy ingredients for a Christmas feast she is hosting for friends and family. It would have been unimaginable last year, but now she hopes it will become a tradition that will continue for a very long time.

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

The Eating Disorders Coalition Lobby Day - October 28, 2015 - The Anna Westin Act

From the Mom's March on Tuesday to Lobby Day on Wednesday!

This year, as I've mentioned in previous posts and updates, we are lobbying for the passage of the Anna Westin Act.  As you'll note at the top of the page above, the Act has the dual designation H.R. 2515 and S. 1865.  This is quite significant - a document in the House and in the Senate, right out of the gate.  Rather than review here what's said in the document, I invite you to read this document.

I also invite you to visit the website of the Eating Disorders Coalition - http://www.eatingdisorderscoalition.org/   

When I originally wrote this last Fall, there were several links the addresses for which have been changed or deleted, unfortunately.  Among them was a great link to an Advocate's Toolbox that clearly explained the training we received.  We learned how to focus on the key points we wanted to make to each Congressperson in the half hour we had.  For newcomers to the advocacy process, this piece also clearly explained how a bill progresses to signature.  I imagine that with some diligence you may be able to find this information by going to the main EDC website linked above.

I am very happy to report that two of our Arizona legislators - Representatives Ann Kirkpatrick and Kyrsten Sinema have signed on as co-sponsors.

I urge you to ask your senators and representatives to support this legislation and to get it passed as soon as possible. 

So, now, I invite you to think about this following information:  The United States of America is composed of 50 states, a federal district (the District of Columbia), five territories and other possessions.  Each state has representation at the federal level - 2 senators and a varying number of representatives depending on the population of the individual state.  There are currently 435 voting members in the House. California, the most populous state, has 53 representatives.  My state, Arizona, has 2 senators and 9 representatives. 

Arizona is also estimated to have, out of a total population of 6,392,017, 66,934 males and 147,167 females with eating disorders.

The Eating Disorders Coalition tasks itself twice a year with the responsibility of organizing a lobby day and sending teams of citizen lobbyists to meet with their senators and representatives.  This year we learned that more than 300 people signed up to lobby - some states had many lobbyists, others as few as 1 or 2.  All came paying their own way and finding lodging as they were able.

The scheduling of each team's agenda, all with different people in different locations (except for the common meetings), boggles my mind!!!!  Having arranged conferences with breakout rooms, I have some experience with scheduling (including lunch and breaks), but the task the Eating Disorders Coalition team takes on twice a year is absolutely amazing and deserves accolades.  For this effort alone, I have become a financial supporter of the EDC and I hope others have or will, too.  

Omigosh.  Think about it.

As an example, our team's (8 people) lobbying day schedule included a training (for everyone) from 8 a.m. to 10:15 a.m. at a location quite close to Capitol Hill and the Senate/House office buildings.  It ended with a lobby day wrap up starting at about 4:30 pm back at our training location.  In between, our team met with, for half an hour, staff members of our two senators in the morning, broke for lunch in one of the cafeterias from about noon until 2 p.m., at which time we all gathered to hear more about the Anna Westin Act of 2015 and to meet two of the original sponsors of the bill, and then continued our lobbying from 3-4:30 pm in the offices of 3 of our 9 representatives. We walked a lot and very fast between the offices and buildings of our Congressional representatives.  Thank goodness for tunnels and helpful people who showed us the way given that it rained pretty much all day.

So think about this again - 300 lobbyists, 100 Senators, 435 Representatives.   Not only are more lobbyists needed, the EDC also must identify which of the Senators and Representatives are available and willing to set aside time for us and among those, which are key players in the advancement of the legislation (e.g. on what committees do they sit).  I realize it's more complicated even than this, but I wanted to try to get a handle on what was involved to put this on.

Our Arizona team of 8, most of whom were from the Phoenix and points northwest area except for me, the lone member from Southern Arizona, in the morning met in the Russell Senate Building with (in order) the staff members of Senator Jeff Flake and Senator John McCain in nearby conference rooms reserved for that purpose.  

Our team leader and a mom, Miriam, presented information derived from the above flyer - Training, Clarity of Parity and Truth in Advertising and statistics specific to our State regarding the number of people affected by eating disorders.  She noted that the Anna Westin Act has a Congressional Budget Score of 0 meaning that the cost of passing the Act is very low (funds have already been allocated to the NIMH and SAMHSA in connection with the Mental Health Parity and Addiction Equity Act of 2008) and summarized the purpose of our visit. Then two team members spoke of their individual experience, either as a mother or a person in recovery or as (in our team's case) a member of the staff of an eating disorder residential treatment facility.   I spoke twice - once in the morning and once in the afternoon, presenting as the mother of a 42 year old woman who has been fighting her eating disorder for 27 years and who had been diagnosed before there was much if any understanding about and the treatment of eating disorders.  Excellent counterpoints were presented by team members in recovery who had benefited from early diagnosis and effective, knowledgeable treatment by health professionals. We then invited questions from the staff members.

I hope to obtain a team photo, but in the meantime here I am outside the door of Senator McCain:

We felt welcomed and listened to and hopeful that the Senators would be persuaded to sign on.

We then walked the tunnel to I think the basement of the Dirksen Building where we enjoyed lunch in one of the many cafeterias available.  Nearby was the Senate Gift shop that we all explored, as well.

At 2 p.m. we gathered in a large meeting room in Dirksen (106) to hear from Kitty Westin and to meet original sponsors of the bill Senator Amy Klobuchar (MN-D) and Senator Kelly Ayotte (NH-R).  Notice the bipartisan (meaning from different parties) support.  In fact, the act has significant bipartisan support now in both the House and the Senate.  Each Senator received an award.

From there our team went on to the House Office Buildings - Longworth House and Cannon House - to meet and talk with staff members of (in order) Congresswoman Martha McSally (AZ-R), Congressman David Schweikert (AZ-R), and Congressman Paul Gosar.  We learned that while the senators in the "Upper House" had significant amenities such as conference meeting rooms, our representatives in the "lower house" devise creative solutions in order to meet with groups of lobbyists such as ourselves ranging from the corridor outside the office to a waiting area within an office to cafeteria areas and even to a storage area across the hall that has comfortable chairs!!  Our team managed  to present our case to all and again were welcomed and listened to with undivided attention.  Here I am at the door of Representative Martha McSally who I've had the pleasure of meeting and speaking to in private (about other issues like the A-10) at two gatherings prior to her decision to run for office.

We wrapped up our presentations after 4:30 p.m. and hurried back from C Street and up 2nd Street to the Capitol Hill Lutheran Church of the Reformation nearby.  Fortunately since my hotel was nearby, I was able to guide us all there quickly.  Everyone answered questions and shared our experiences before disbanding to either hurry and catch transportation home or to find a restaurant at which to have dinner.

I returned to my hotel and hopefully made my way to The Sonoma on Pennsylvania Avenue where I had not made a reservation figuring, mistakenly, that 6 p.m. wasn't too late to show up. (I had eaten at the Sonoma on Monday night arriving at 5:30 and hardly anyone was there.)  Well, the place was hopping with people pouring in and climbing upstairs to what I assumed was a Happy Hour area.  I was shown to a little table over in the corner near the bar (that suited me just fine), ordered a glass of wine and a bowl of soup to start.  I looked up to see a familiar face walk in - that of Heidrun D who had traveled down from the Boston area for the luncheon and March on Tuesday and lobby day Wednesday.  I invited her to join me and we spent quite awhile chatting and reviewing our experiences in Washington, DC as well as sharing our own stories.  

Thursday morning I had the luxury of sleeping in, did a bit of tourist-ing since I was so near everything and then made my way to the airport for the trip home.   I checked my bag so I wouldn't need to worry about it and settled in to finish a book.  I thought you'd get a kick out of the airport scene that greeted everyone at the Southwest counter.

What an action and emotion-packed trip!

Parents - Setting Your Boundaries, Marjie Ruth

Marjie Ruth's posts always provide me with valuable things to think about.  Here's her latest, again on boundaries.  Note that she coordinates a support group in Tampa, Florida so if you live in the area, you might want to check it out.

"...Nothing can be said to be certain except death and taxes."
~Benjamin Franklin

Dear Family & Friends of the Eating Disordered (ffed);

Our support group will be meeting again this Wednesday (7/25) at 7:00pm at the Hyde Park counseling Center in Tampa (for directions , chk out their website: HydeParkCenter.com). The ABA 12-step meeting for those battling a disorder will, as usual, be meeting at the same time at the same facility. All our welcome. If you expect to attend the ffed meeting, please drop me a brief line to that effect. The meetings are free, fulfilling, and even sometimes fun.

The topic of boundaries is recurring and for important reason. Our understanding of and ability to establish healthy boundaries for ourselves will affect all of our relationships, but none more so than that with our eating disordered loved one. ED's are a disease that involves the whole family. While we didn't cause the disease, we most certainly can and generally do find ourselves caught up in it, to a greater or lesser degree, and contributing to it through our unwitting enabling (see definition in 11/2 email: doing for someone what they could & should be doing for themselves).

As we think and talk about boundaries, the discussion ultimately leads us to the tough need to identify where boundaries are needed and the tougher still act of defining the boundaries in no uncertain terms. As the saying goes, this is where the rubber hits the road, and for many of us that's exactly when we find ourselves spinning our wheels. We know that things are out of kilter, and we rightly sense that we've become enmeshed in the problem. But we're still unable to see what would seem to us to be a viable option. In fact, it's generally not a matter of lack of options, but more of our inability to recognize that it's our own fears & worries--our own emotional baggage--that we allow to keep us stuck in the mud of enabling. The possibility that our loved one won't respect the boundary we set keeps us from drawing the line. What if we set a boundary and it is broken? We are ultimately afraid that our loved one will carry through on her/his implied threat of self harm (ie. starvation, emotional breakdown, maybe even suicide, etc). We think that our involvement will somehow prevent any such cataclysmic event. We cringe at the thought of having to actually follow through with the consequence. After all, it's always been our intent to make things better, and that could be the worst thing ever...or so we think.

And therein lies the problem, it's with our thinking, our perspective. All responsible folks live with rules and consequences. If we don't pay our electric bill, first there will be a late fee added; eventually the power will be turned off. If it were not so, if there wasn't any penalty for not paying our bill, if it were just left up to us to pay if we wanted but at no risk of being fined or having to do without power--how many people do you honestly think would be sending off that hefty check each month? But for most of us, we know and accept the boundaries the power company, the bank or landlord, the city & state government, etc. have set for what we can and can't do and for the consequences that will be administered should we cross the line. We may not always like the rules, but we respect them if only because we know what the result of disobedience or neglect will be.

It may at times be difficult for us to believe, but in spite of the complaining and dramatics and even outright hostility we must endure, our loved ones will ultimately respect us far more for our leadership (as in leading by example--setting an example of healthy boundaries) than they ever will for our pandering to their addiction's dictates. But, you may be asking, what if the boundaries we set seem to make their disorder worse? First, thank you for being open and honest enough to voice that fear. Secondly, it's critical that we come to understand that the addict will always seek to protect their addiction. One of the keys ways this is done is by manipulating us into thinking they're doing better when in fact they are merely doing a better job of fooling us, of hiding their addictive behavior from us. When we stop "cooperating" (that's what enabling really is--cooperating with the enemy), they may very well lash out in anger and even seek to exact retribution on us by hitting where it hurts most: they will act upon our fears by showing us just how disordered they can be. This doesn't necessarily mean that they're getting worse, only that they've quit hiding what they've been indulging in all along.
While life doesn't come with many guarantees (opening quote being an example of two exceptions), but there are some absolutes I can offer. Nothing earth shattering or that you didn't know already but keeping these in mind may be a help as you struggle to see more clearly just where your boundaries should be:

1. If your aim is to please everyone, you can be certain you'll fail.
2. If your goal is perfection, you will never attain it.
3. Everyone has second guesses and some regrets.
4. You can't change other people, only how you respond to them.
5. Enabling an addiction will never cure it, but only insure it's continued existence.
6. When you stop enabling, you will be able to take better care of yourself.

Hope you have a decent week.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

MarjieRuth1@gmail.com

Traits...... introversion and extroversion and how this information meshes with family-based therapy

Yesterday one of my favorite bloggers connected her readers with another TED talk session.  After watching a remarkable presentation by Elyn Saks (Yale Law School Graduate; Professor, USC College of Law; and MacArthur Fellow among other accomplishments) and about her life's journey with schizophrenia, I decided to browse around and see what else I could find before dinnertime.

I noticed that Susan Cain had been a presenter (more than 2 million views at this point) - The Power of Introverts - and I remembered that I had not yet finished reading her book, Quiet - The Power of Introverts in a World that Can't Stop Talking (Crown Publishers, 2012).  In fact, I'd barely started a few weeks ago.  After watching her talk, I vowed I'd pick up her book again.  So, this afternoon, I did.

I'm not finished yet, actually.  But I am quite grateful to Charlotte for leading me to the TED site and for a few minutes of my own yesterday afternoon, because I've learned more not only about myself, but have come to understand a lot more about introverts, developmental psychology, and perhaps even about my family member.

I don't think I would have picked up the book this afternoon if I hadn't also attended my usual Saturday morning meeting and realized how far I'd come in the program (and how much more work I needed to do).  I know myself far better than I did eight years ago.  I've also come to understand at a much deeper level how different my family member and I are.

She's an extrovert.  In fact, she confirmed this yesterday when we talked.  I'm an introvert.  And, Susan Cain has helped me to understand better what these two words mean developmentally and how we differ.

I've also just realized how this knowledge fits so aptly into the concepts of family therapy and communication, topics that I've written about on my blog (links provided earlier in this sentence) - e.g. "All in the Family and Elsewhere."  Susan Cain provides terrific examples of how both children and adults respond to experiences, depending on this part of who they are.   For example, I rarely have either the television or the radio on.  Sometimes I'll listen to music while doing something.  My husband, also an introvert, often remarks about the peacefulness of our home and how much he looks forward to coming home after a long, busy, interactive day.  When my family member comes to visit, however, her first comment is something along the lines of "it's too quiet here!"

She likes to be with people a lot; I need time-outs and relish days at home after spending other days with groups of people in meetings.  One might ask, how does this translate into what you daughter or son needs as part of their recovery?  their experiences at home following a stint in a residential treatment center?  These are important questions for the family to address before their loved one returns home.

Backtracking a bit, I wrote a piece on States and Traits after hearing Dr. Kate Tchanturia's talk on Cognitive Remediation Therapy at the NEDA Conference in New York City a couple of years ago.  I hadn't thought much about traits lately until I listened to Susan Cain's talk.  I'm thinking a lot more about traits now that I've read her book and about the research of scientists like Dr. Jerome Kagan.

Dr. Kagan's studies have revealed that one can pretty much forecast whether one will become an introvert or an extrovert from infancy and that fMRI's and the work of one of his colleagues, Dr. Carl Schwartz, have shown that the processing of the adult brain really hasn't changed that much  - in other words the traits are fairly intact in spite of a lot of other things we call environment.

I'm still reading (Chapter 6 and sensitivity as well as empathy) and will probably come back here with more to say.  In the meantime, I've found reading Cain's book to be very helpful as I unravel the puzzle of my family member's journey.

Marjie Ruth: Finding the Route to Recovery

I've deliberately stepped away from this blog for awhile to rest.  I was exhausted by the work involved not only in advocating for and supporting my beloved daughter, but also by the tension of worrying that her body and/or her will would finally give out before her team could put together a plan that set absolute boundaries this time over or under or around which she would not be able to go.  The goal was to provide her with a safe place so she could begin the work not only of re-gaining but also putting herself back together again.  She is there now.  In life there are no guarantees.  We do hope, though, that this path will give her another chance.

Here's Marjie Ruth's latest contribution....... She puts into words what I have struggled with for such a long time.

At bottom is the best soil to sow and grow something new again.

In that sense, hitting bottom, while extremely painful, is also the sowing ground.

~Anonymous

Dear Family & Friends of the Eating Disordered;

Perhaps one of the most difficult aspects of dealing with a loved one and their disorder/addiction/mental illness, is not simply in figuring out where to get help for them. While that can truly be a daunting task at times, especially as such treatment can often come with a hefty price tag, but once found we're faced with what in some cases seems to be the nearly impossible challenge of getting them to be willing to receive the help we're offering. How do you get someone in the grips of a disorder like anorexia or bulimia or alcoholism or drug abuse to buy into the idea of going to a treatment program or working with a therapist whose goal is to wrest the crutch out of their life--the crutch that they are so very sure is not only holding them up, but also holding them together to be able to function at all? We see their behavior as, at times, bordering on insanity. Yet we then ask that "insane" person to please listen to our rational and logical explanation of why they need to submit, and we even ask them to respond in a reasonable manner. Sorry to say, but that can be asking a lot of the "inmate"--that person so locked into the irrational world of an eating disorder or some other crippling addiction.

So, what are we to do? Some would counsel us to just walk away, to throw them out, to turn our back and let them sink or swim. "Just" you say? Why don't you ask me to "just" cut off my right arm? The advisor(s) in these instances may be well intended in that they relate more to us, the family & friends, than they do the disordered person. Their motivation is to help us survive the hell that the disease can inflict on those who are closest to its victim, and to not see us destroyed by the disease also. Unfortunately, such good intentions do little to help us and instead may only make us feel more alone in our certainty that others truly cannot comprehend the depths of our pain and a love that will not give up hope until life itself is gone.

But we are not alone. Others have gone through this same pain, and countless more, I am sorry to say, will have to tread a road they have no clue about...yet. So, how have others dealt with this same horror? What have they learned that can possibly come to our aid? All 12 step programs are founded on the same guiding principles which were developed through experience with addictions and are a compilation of work by various folks as articulated by William Wilson back in 1934, who is now referred to as Bill W. Interventions are staged with the assistance of trained and experienced therapists. Treatment programs have been established all over the country. Hundreds and hundreds of books have been written. Support groups surface. Survivors share. But the struggle goes on seemingly anew for each person, each family, each circle of friends dealing with a disorder.

What all of these programs and resources do have in common are a few very basic tenets that, I feel, are the touchstone that we can repeatedly refer to:

1. Recovery only truly happens when the person is ready to do it. The important work that family & friends can do is to learn how not to be an enabler, a co-dependent, a participant in the dysfunction.
2. No one can "do" or make recovery happen for another. We can make treatment and possibly recovery a possibility, but then we must step back and get out of their disease.
3. A person can get so far into a disorder/addiction that they get to a point where they cannot find their way out without (preferably professional) intervention. When an anorexic becomes malnourished, her brain simply does not function well enough to allow for any clarity of thought. An alcoholic or drug addict needs medical supervision to safely survive withdrawal from the substance abuse. The cycles of abuse can leverage such a tight grip, both physically and mentally, that interrupting the pattern in order to even start any kind of turn around may need medical intervention initially.
4. Setting strict boundaries with no backing down may be the only way to initiate necessary treatment. This is a frightening and painful experience not only for the person with the disorder, but also for those who care and must struggle to set the boundaries and then fight their own battle with their emotions in order to find the strength to keep them in place. Learning how to and where to set boundaries is our path, as family & friends, to healthier relationships and also models healthy functioning for our loved one.
5. There are no guarantees that recovery will happen, or that even if it does that it will stick (can you say "relapse"?). But it's a pretty darn good bet that enabling a disorder will insure that it continues to thrive, even while its host is slowly dying.
6. Recovery can and does happen. While are greatest fear is that it may not happen or hold for our loved one, we need to calm ourselves with the knowledge and hope that many, many folks have come back from the brink to live healthy fulfilling lives.
7. Recognizing, understanding and accepting these truths is possibly the best way we can continue to stay grounded in order to continue to cope with their disease while not contributing to it. We need to care for ourselves while being reminded that we did not cause it, we can not cure it, and we most certainly can not control it.

Thank you for reading. Please feel free to respond with any questions or thoughts, should you feel so motivated. Also feel free to share this email with anyone who might be interested. All I ask is that you include my name & info.

Marjie Ruth

727-244-9011 (c)

MarjieRuth1@gmail.com

sruth1@tampabay.rr.com

The Iron Will - both hers and mine

This essay by Amalia Negreponti was published on the internet in Huffpost Healthy Living two days ago (March 20, 2012).

Her essay is powerful and describes her experience with anorexia.  She also describes her own turning point.


From the essay and one of the reasons why, even in the face of some of the things my daughter says to her caregivers when she is speaking the anger of the ED that so wants to undermine and kill her, she needs love, understanding and support for her to pull her strength together to survive. She does have an iron will and a huge amount of fight in her.  How to call upon that iron will and fight to turn that disease around?

Amalia Negreponti's mother's thought at that time (see below) reflects the struggle that we, my daughter's family, have continued to experience while we have explored and implemented so many different paths available to her to give her a chance to survive.  My iron will not to give up.  Never to give up.  Where there is life, there is hope.

Time and time again my daughter has received one form of treatment or another in a variety of settings and time and time again upon release she has again been overwhelmed by her disease and returned to behaviors that have undermined her life.

"She's going to die, can't you see it?" My usually sweet and gentle yaya was fiercely telling my mother, in a reprimanding tone, "We need to get her to a hospital to be force-fed." "It'll be no use," my mother said, "She'll just stop eating as soon as she comes out of hospital and she won't trust us too. There is no chance she'll survive then. Now maybe we still have a chance to persuade her to eat. If we fail, we'll all die of course." She spoke in a matter-of-fact manner.

  ....I was appalled. My dynamic mother who never gave up, and my yaya, an epitome of rationality and understated chic-ness, would act like figures out of an ancient Greek tragedy all because I wouldn't eat!

Although I still thought my mother and yaya were over reacting to something not that important, I respected their desperation and felt a responsibility toward them because I now knew how much I was loved by them. I made a decision: I asked my mother to take me to my favorite pastry shop in Athens so I could eat one of its "signature" chocolate buns filled with cream. They were huge and I had once adored them.

We almost flew to the pastry shop. By midnight we were still there: myself laboriously still eating the bun and my mother applauding every bite I took, with tears of joy in her eyes. Eventually, I managed to finish it. Every bite was torture.

Every bite I took from then on was torture too. As I slowly, very slowly, grew healthier, I gained some weight. Although I was still too thin and I knew it, I could not sleep, in mortal fear that in gaining this weight and thus regaining my life, I would lose control of it. I would become "normal," therefore mortal, a woman.

In the meantime, I diligently trudged through what would amount to volumes, were it not on the internet, about my illness. I devoured myriad psychiatric papers and observations of actual "cases" which had been hospitalized. It was shocking how nearly all ended in death. Thanks to the web, I was able to heal mentally as well as emotionally. I entered many forums where both survivors, as well as people still battling the disease, were speaking candidly to one another about the disease. I read and I read and I read, until I read myself out of ever feeling so alone and vulnerable, that I would fall prey to this enemy, again.

I used the iron will and discipline anorexia had given me, to master myself. To become one of those who survived the illness. Who beat it. Every moment of my struggle was imbued with the knowledge that I was loved beyond reason by those I loved: my mother and grandmother -- my yaya, whose name lives on through me. Amalia.

We, my daughter's family and friends and team members, now pray that her current placement in a psychiatric institution will give her the opportunity to survive and yet in this first stage her co-occurring brain disorder and her amazing iron will are hampering that possibility. Would that somehow her Higher Power and she connect to start her on her recovery path and that her team there construct the best possible protocol to give her that chance.

Time will tell.  One step at a time.

What about the "contributing to" part?

[edited an hour later after thinking about this even more]

I spent several days thinking about the title of this post because I wanted to catch attention and at the same time not totally alienate those who firmly believe that "contributing to" in terms of the family is not a factor in the development of an eating disorder.  Note, I did not write the word "cause."

I think "contributing to" can be a  factor.  My daughter thinks so.  I agree with her. Environment is a factor.  Family is part of the environment.  Sometimes the family needs to engage in therapy if only because the family's son's or daughter's brain works differently and so the person needs a different communication or sensory  environment. We are all different.  Not even twins are the same.  Remember that I fought bulimia for more than 15 years and slipped into anorexia at least twice, judging by photos and family recollections.  I know my thoughts in this paragraph are true, at least for me and for my daughter.  I imagine they are true for others.

What has prompted me to write about this again?  I have written about this because the subject keeps cropping up and even dividing groups that all have the same goal - recovery.

 I have written about this issue before in two of my essays:  "Reflections on Communication - Family Week" and "All in the Family and Elsewhere". 

Here's the current thinking about what might cause an eating disorder.  This is taken from an NIMH publication titled "Understanding Eating Disorders" .  I could have used a variety of sources but I think many would agree with these basic points that continue to be referenced:

"There have been a number of studies showing that people who develop anorexia nervosa have certain traits in childhood that put them at risk, such as anxiety and perfectionism. If people do not have those traits, they are probably less likely to develop an eating disorder," says Walter Kaye, M.D. He directs the eating disorders program at the University of California, San Diego and also receives NIH funding for his research.

Studies also show eating disorders run in families. But is it nature or nurture, inherited or learned behavior? Studies of twins suggest that genes play a role. To help further research into the genetics of eating disorders, Drs. Kaye, Bulik, and other researchers are collecting DNA and blood samples from people in families where more than one person has anorexia nervosa. NIMH is supporting the research and will maintain a bank of the DNA and cell lines collected, so they can be used by researchers trying to identify variations in genes that affect the risk for anorexia and bulimia nervosa."

I then turn to, as an example and there are others listed here on my blog, all of Dr. Janet Treasure's research and work, too, noting her and her colleague's book - Skills-based Learning for Caring for a Loved One with an Eating Disorder - the New Maudsley Method - family dynamics are hugely important in the recovery of a loved one.

Again, in this context my statement about contributing to is a positive step/thought towards examining the home environment so it will be as supportive as possible.  At the time of the onset of my illness, this did not happen.  Heck, my parents didn't even know about it.  Early on they knew something wasn't right and even hospitalized me but neither they nor the hospital staff knew that I was binging and purging and there was no way I was going to tell them.  Things were going on in my household that were troubling and upsetting.  B/P worked for me. I hated that I was suddenly gaining weight.  Purging soon became a habit and I was vulnerable to that development.   At the time of the onset of my daughter's illness, this examination and change did not happen, either, although I did arrange therapy and then a month's hospitalization for her.  I did not know any better because my own environment growing up was similar.  I did not know the science behind eating disorders.  I figured if I could get well (eventually), so could she because she did have access to therapy and I didn't.  What an error in thinking that was!!!

 I did learn to change.  It involved hard work.   I truly regret my lack of understanding and knowledge and have made it my life's purpose since to learn more and therefore to support and advocate for my daughter for years now.

So, on the thought of contributing to -
The family environment may be wonderful; but the school environment may be awful, either for example due to bullying or due to scholarly expectations that are beyond the person's ability to handle. The family needs to know and/or to find out about this and respond to it as well as to the following examples.  The family may be wonderful; but a person's peer or relative sexually assaulted or raped her and she is hiding the emotional triggering fall-out from that event.  The family's environment may be wonderful but another event - even an activity - in the vulnerable person's life has opened the door to disordered eating that leads to an ED.  Think about hormonal changes, too.  Think about the adolescent developing brain and impulsive behavior.  The family dynamics may be tense because the breadwinner's (or plural) environment may be brought into the house at night.  The family dynamics may be tense because a caregiver is starting to chafe about wanting to make her or his mark in the world and feels trapped.  The family dynamics may be awful because one member (or more) is abusive.  The family dynamics may be disrupted because of divorce and perhaps the continuing bitterness that just might be affecting the vulnerability to an ED.  Divorce itself can be a triggering factor.  The family dynamics may be disrupted because another family member may be seriously ill so less attention is being paid to one - the vulnerable one - who needs it during adolescence.  The family environment may be wonderful but the person is mentally ill and is frightened and confused by what is going on in his/her mind.... and is genetically vulnerable to an ED.  I could continue this list.

Then there's the whole issue of societal norms, changing values, peer pressure, substances abuse and advertising......

My point is that something probably contributed to the appearance and continuation of the eating disorder beyond the genetic component.  Something triggered that genetic component.


So, how to address all of this?

A solution would include helping a person to  manage change.  This link offers some thoughts on this.
If your child is an adolescent or younger, I'd recommend the book Help Your Teenager Beat an Eating Disorder.  The authors, James Lock and Daniel Le Grange have written an excellent resource.  Again, Janet Treasure, Grainne Smith and Anna Crane's book, Skills-based Learning for Caring for a Loved One with an Eating Disorder offers insight to change.  A supportive environment is hugely important, whether it be a home or a residential treatment center or a hospital.  Love is important.  So is the immensely important recognition of the fear that underlies so much of the behavior of a person who has become trapped in an eating disorder.  The knowledge and understanding obtained by attending a conference put on by NEDA or Maudsley Parents or NAMI might help.  A trip to San Diego and a week at Dr. Walter Kaye's clinic might help.  If the family has support and structure and training to endure the hard work involved in treating the child at home using the Maudsley Method, recovery may be possible.  I say "may" because this method does work but not for every family nor can every family manage the complex arrangements that are involved, including, of course, financial support.  Here's the latest on the efficacy of this approach.

Therapy and medications certainly can be a factor but nutrition - meaning food as well as a balanced meal plan behind it to provide things like calories and electrolytes and fatty acids (think omega-3's) and necessary enzymes and vitamins is the first step.  Sometimes it's important to provide supplements but the bottom line is food. 

The  magic bullet, if one can call it that,  is "food is medicine."  The how to get them to eat is the frightening hurdle.  Creating an environment where this can happen is paramount to - using that phrase again - contributing to their recovery.  The environment must not be punitive.  Everything must be done with caring and love for this person, and sometimes that can be very difficult to pull off when the person is fighting every step of the way.     It's very, very hard work.