Eating Disorders - Pulling Knowledge Together - Carrie Arnold, Kathryn Hansen and Marya Hornbacher

Several people who’ve been in recovery for quite some time have thought and written about eating disorders (and co-morbidities), including me (here in my blog), from a variety of perspectives and have taken the time to consider and then share what we’ve learned that apparently made a difference.  

For the purposes of this post,  I’m specifically thinking of Carrie Arnold, Kathryn Hansen, and Marya Hornbacher. 

Kathryn Hansen, Carrie Arnold and now Marya Hornbacher with her work in progress have taken/are taking this discussion to the next level.  I know there are many others who have written memoirs on this subject; yet I am focusing on these women because their work is taking our knowledge of eating disorders to the next phase of understanding what's going on in our brains and possibly why; how we think and why.  They are/will be sharing their knowledge in an easy, conversational style to help those of us who are not scientists understand scientific concepts and developments.

Their work is important because until as recently as 2010, prominent people in the field of eating disorders were lamenting that new knowledge about eating disorders could take years and years to reach the eyes and ears of those who can help make a difference, particularly in residential treatment centers, in doctors' and therapists' offices and in homes where parents and other family members are employing the latest thinking and techniques to help their family members get going on recovery.  

The electronic media is serving to speed up this process.

Few are familiar with Kathryn Hansen’s book Brain Over Binge, Camellia Publishing, 2011, possibly because of the concept of the “tipping point" made so popular by Malcolm Gladwell in his book,  The Tipping Point: How Little Things Can Make a Big Difference first published by Little Brown in 2000.   Since she has now developed a workbook to accompany the book, perhaps her ideas are catching on.   Kathryn's work preceded much of the literature about the brain and eating disorders, some of which I learned in a course I took here at the University of Arizona and wrote about here on my blog.  Kathryn published her book in 2011.  Since then information has started to tumble forth and people, who are coming to understand better, are paying attention and advocating for change through legislation.  After I read her book, I wrote something of a review incorporating additional information and examined what she wrote here.   From the book cover, I pull the following:

After six years of chronic binging and purging, Kathryn Hansen stopped her eating disorder independently and abruptly, using one tool and one tool only:  the power of her own brain.  In Brain over Binge, Kathryn traces the course of her condition and describes in detail her unconventional approach to recovery.  In the process, she offers a much-needed alternative perspective to the canvas of eating disorder literature to help others struggling with any form of binge eating.

The mainstream view of bulimia holds that is is a disease that manifests as a means of coping with deep underlying emotional problems.  But the author persuasively argues that in her case, this philosophy actually encouraged more binge eating.  For her, it really was about the food.  Kathryn's candid account cuts through the confusion she experienced in traditional therapy and simplifies both the origins of bulimia and its cure in a fresh, intriguing, and always clear voice.

Brain over Binge is a brave book that will help many by delivering an informed and inspiring message of free will, self-reliance, and self control.

She provides more information about her personal recovery process at her website here.  Note again that her book was published in 2011 and since that time much, much more has been revealed about the brain and genetics.  However, her book offers a powerful perspective on how important and effective a change in behavior can be.

In summary, if you haven't found a way to overcome your bulimia or help your loved one overcome bulimia, take a look at this post here on my blog:  

Many people are hailing Carrie Arnold’s book, Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders, Routledge, 2013, as a major contribution to the understanding of eating disorders.

Following are two excerpts from the book's cover.  The first is written by Walter Kaye, MD, Professor of Psychology and Director, University of California, San Diego, Eating Disorder Research and Treatment Program.  To better understand the import of what he has to say about Carrie Arnold's achievement, you can read more about him and his outstanding dedication to his work here.   He writes, 

Carrie Arnold has done an outstanding job of translating complex and difficult research findings into understandable concepts.  This book should be an essential guide for individuals with eating disorders and their families who would like to know more about how brain processes contribute to eating disorder symptoms. 

  

 The second excerpt summarizes what one learns when one reads her book:

Decoding Anorexia is the first and only book to explain anorexia nervosa from a biological point of view.  Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder are paired with first person descriptions and personal narratives of what biological differences mean to sufferers.  Author Carrie Arnold, a trained scientist, science writer, and past sufferer of anorexia, speaks with clinicians, researchers, parents, other family members, and sufferers about the factors that make one vulnerable to anorexia, the neurochemistry behind the call of starvation, and why it's so hard to leave anorexia behind.  She also addresses how environment is still important and influences behaviors, the characteristics of people at high risk for developing anorexia nervosa, why anorexics find starvation 'rewarding', and why denial is such a salient feature, and how sufferers can overcome it.  

Note for the purposes of what I'm focusing on here: "how sufferers can overcome it."

Jennie Schaefer has written two of the books that are on my shelf:  Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too (2004) and Goodbye Ed, Hello Me: Recover from Your Eating Disorder and Fall in Love with Life (2009).  From the book jacket review, 

Ultimately her two books reveal [again, the changing the behavior theme] that being fully recovered is not just about breaking free from destructive behaviors with food and having a healthy relationship with your body; it also means finding joy and peace in your life."  

I refer to Jennie Schaefer and her groundbreaking books that have helped countless people get on the path to recovery, because Schaefer also maintains a blog and has recently written that she spent quite a bit of time talking with author Marya Hornbacher.  The culmination of that conversation is Schaefer's three fascinating posts detailing what Hornbacher has been thinking since the publication of her first book, Wasted. 

To step back for a moment, Marya Hornbacher first came to everyone’s including my and my family member's attention when she published  Wasted:  A Memoir of Anorexia and Bulimia [1998 by Harper Collins].  The paperback followed shortly after that and arrived in our hands sometime in 2005 when my family member's therapist gave the book to her to read.  It's probably the most candid book I've ever read about eating disorders and yet the book was also hugely educational and helpful to me to try to comprehend the depths of my family member's profound illness that was so much stronger than mine had ever been.    I still highly recommend the book but always provide the caveat that it's not easy reading.

Marya Hornbacher went on to write Madness: A Bipolar Life; another candid memoir that revealed her struggles with the co-moribidity that  interfered with her recovery and her life.  The book includes helpful facts, websites, and contacts regarding the diagnosis of bipolar disorder.

Now, according to the discussion she had with Schaefer, Hornbacher will be considering, among other things, "unsticking" and the importance of changing one’s behavior (one habit) and replacing it with another behavior in order to get into recovery.   Like Arnold, Hornbacher indicates in the interview that she will be spending quite a bit of time researching  material and working with people in order to write this next book.  

I look forward to the publication of her book and in the meantime I refer you to Jennie Schaefer's blog and these three links:
http://www.jennischaefer.com/blog/overcoming-adversity/wasted-full-recovery/
http://www.jennischaefer.com/blog/overcoming-adversity/take-medication-letting-go-mary-hornbacher/
http://www.jennischaefer.com/blog/overcoming-adversity/marya-strategies-unsticking-part-3-3/

Eating Disorder Recovery is a Process/ED Treatment Must Be As Well

Among all the messages coming at the public in the media this week are those focused on eating disorders, thanks to the growing initiative known as Eating Disorders Awareness Week.  Some of the messages are personal; i.e. they are stories.  Stories tend to grab attention as many of us know which is why the Eating Disorders Coalition has worked so hard to create the means for families to tell their stories to legislators on Capitol Hill.

This work extends beyond Washington, DC to individual states like Arizona where yesterday, Senator Katie Hobbs introduced a resolution to our Legislature.  Here's her resolution:

Yet stories present "just" one perspective on a disease that we know now is biologically based and that research is revealing appears for reasons that aren't quite understood.  So, to educate the public somehow these stories in the media especially this week need to be couched in a constantly updated base of information about eating disorders.  Some pieces are introduced with that kind of information; others are not.  Some continue to highlight the relationship between mother and daughter/son in ways that can be interpreted as blaming.  The media needs to get beyond this blaming message by improving the message and one of the ways the media can do that is by introducing the story with, perhaps, a few sentences that emphasize that eating disorders are, in fact, biologically based illnesses.  The how remains the question and many are working on a solution including organizations like F.E.A.S.T., NEDA, ANAD, NAMI and others as well as dedicated researchers.

Yet this is only part of the entire picture.  The other part is the necessary acceptance by all concerned -- parents, the medical establishment, insurance companies, the legislature, and the individual herself/himself who may or may not be aware of their role in getting well -- that recovery is a process and not just dependent on one stay in a residential facility or a several months-long effort on the part of a team including the family.  Many of us have learned that the potential for the reappearance of the illness may be a life long tendency. 

In addition, the recovery process depends on the Establishment's/the public's awareness that treatment of eating disorders must be carried on in the same way that treatment is provided for other biological illnesses.  So, for example, a person with diabetes or multiple sclerosis gets on-going treatment covered by insurance (one hopes and that's another topic) and monitored on an ongoing basis, as well.

This is not as simple as it looks.  Those with illnesses like diabetes can monitor their own illnesses through daily tests and periodic doctor's visits.  The treatment of eating disorders, because they aren't well understood yet, isn't as easily defined.  And often, the brains (thinking processes) of those with eating disorders are so compromised that they are unable to monitor their "state".  So, a system needs to be put in place for this illness that provides ongoing coverage by insurance so that anytime a person with this illness falters, s/he can return to more intensive treatment to get back on track without having to jump through hoops to get it.

In other words, the door to treatment for eating disorders must remain open and methods of treatment (both physical and psychological) must remain flexible to address that person's changing needs since this disease affects people of all ages.  All too often doors are slammed shut without alternatives provided.  This situation must change, especially for those whose eating disorder has been progressing for a long time.

The bottom line is that we need legislation to make sure that insurance providers and the medical establishment remain as open to the need for ongoing  treatment  of eating disorders as they are for diseases like diabetes.  In addition, we need the education/continuing education of doctors and therapists to include the latest information about treatment of eating disorders and the incorporation of this information into the required re-licensing of all.

Guest Post by Marjie Ruth: Memorize and Repeat - Be Consistent and Persistent

[This post seemed especially pertinent to me this week.  I often fail in my efforts to establish and maintain healthy boundaries.  Practice, practice, practice.]

Let us not look back in anger or forward in fear,

but around in awareness.

~ James Thurber

 The other week I was communicating with one of our mom's who is currently going through a challenging time of growth with her daughter. "Time of growth" might sound like something of a euphemism when used in reference to dealing with a loved one who is in a serious (sometimes life or death) struggle with their disorder and things don't seem to be going very well. How can a relapse or regression be termed anything so trivial or pleasant sounding as a "time of growth"? Shall we call living on the edge of Hell just a period of "cozying up to the fireplace"? Nope, I'm not underestimating the amount of pain that families go through (lived there, felt it) when the things get rough. Periods of growth, or struggling to grow, are challenging and difficult. Remember the common term growing pains? Yes, now you know why the word pain is used. Growth can be very, very painful and generally the level of pain correlates directly to the level of dysfunction involved. So what might be a less painful though perhaps still somewhat stressful step for a more highly functioning person, is a real crisis with an uncertain outcome for someone battling a serious addiction or personality dysfunction or other mental illness. 

At all times and especially during the challenging moments with our loved ones, it's especially important for each of us to be consistent and persistent in the establishment and maintenance of healthy boundaries. Be consistent: be clear to yourself and your loved one as to what your boundaries are and say the same thing over and over if necessary (see: persistent) to stay on point and to get the point across that you mean what you say; be on the same page with your spouse, or partner, or other involved family members so that the message is consistent among all; avoid second guessing yourself--especially under pressure--and retreating back to your old comfort zone of enabling behaviors. Be persistent: stay the course as growth and change generally take much longer than we would like, hope, or expect. So often we give up and give in without realizing that we just veered off the path of the goal we so wanted (growth and change) and have derailed recovery because it was simply too uncomfortable for us.  Frankly, it's no fun being a border control guard, but that's the role that we pretty much must assume in order to protect and enforce the boundaries that we establish with our loved ones. It's difficult because their addiction will constantly want to test those boundaries to find the weak chink and attempt to break through. That's what desperate disorders/addictions do. They fight for survival through exerting control over their host--your loved one. Sound like an invasion of aliens? That's what it often feels like to us, but to them it just feels like trying to make it through another tough, tough day.  

And it can be tough on us to feel as though we're being harsh and mean and cold by enforcing the "rules", but I guess that is simply the way it feels when we have to stick with healthy boundaries against the onslaught of a very ugly disease. Addicts retreat repeatedly to the "comfort" of their addiction because it feels good/safe in the moment. And then when that brings negative consequences down the road, guess what they do to deal with those bad feelings? Yup, it's back to the addiction for another comfort fix. The struggle for recovery can be very painful for everyone involved or affected by the addict. What we need to constantly remember is that one good result does not a cure make. In other words, the lure of the addiction is so strong, it takes a lot of new learning and growing to get to a place of being able to resist it. So that means we must continue to stay grounded in our enforcement of boundaries for a long long time...for always. 

Wishing for you strength, courage, peace, and hope.

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

Part 3 of 3 of the F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

As an advocate mostly through my blog but also through other activities including sharing experience, strength and hope on two websites, my trip to my State Capital to provide legislators with my and my family member's abbreviated story after presenting the same 20-minute story to a group of local therapists, as well as low-keyed (well, maybe some don't think it is/was so low-keyed) coaching of key members of my family member's team, I was curious to hear Laura Collins Lyster-Mensh's presentation as well as Colleen Wise's the following day.

Laura is the Founder and Policy Director of F.E.A.S.T. and much, much more as can be learned if you read her bio.  I find it difficult to address her as Lyster-Mensh or even Collins (the name she used for years) because she has become my and many people's amazing hero and citizen scientist and I am startled at times to realize that I, like many others, are on a first-name basis with this incredible woman.

Her talk was titled, "An Advocate's Vision for a Complete Spectrum of Care," and her vision, I believe, is not just for those who are ravaged by eating disorders (and here I am talking about all of the people affected when a family member develops one) but anyone who needs health care.

Rather than to report the details of her multi-faceted vision, which will be available at the F.E.A.S.T. site, I found it ironic to recognize and reflect, as I listened to Laura's presentation, that my family member's care has been anything but a continuum.   Rather, it has been a patchwork of a dysfunctional mental health system; of laws well-intentioned but at times interfering and discriminatory; protocols that have been standard or above average to substandard or not standard at all that vary from institution to institution; of communication -- partial or even miscommunication between and among caregivers that has at best prolonged her illness to actually has endangered her life; of at times a piecemeal approach to diagnoses and treatment independent of comprehensive records; and of people/organizations who ranged from incredibly devoted to bringing a person into recovery to interested in treating only one aspect of the illness to a few who were downright sadistic and uncaring.

We have met and been helped by individuals and institutions who/that have bent over backwards in an attempt to identify possible effective courses of action, who have offered reduced cost of treatment given our extended family's increasing burgeoning expense, who served pro bono in a variety of capacities, who have stretched their institution's capacity to work with our family member, who have answered a telephone call from an absolute stranger (Kitty Westin did this for me several years ago after I was given her private number by a friend in a medical setting who observed the dire circumstances my family member was in), and who have listened when I have presented information that could not possibly be comprehended in a weekly one hour session. And, so much more.

There have been several times over these many years if you'd asked me if I thought my family member would be alive in one, two, seven and now twelve years in this second go-around, I would have retained hope of the possibility but uncertainty that her body and mind could survive what has happened to her.  I know that others have experienced equally challenging situations and others have lost the fight.  In fact, at the beginning of her relapse, a friend and therapist told me more than ten years ago to "hope for the best and prepare for the worst."

Yet on the plus side, as I expressed in Part 1, advances have been made in the knowledge and treatment of eating disorders that have made survival and even a productive life more of a possibility for the boys and girls, and young men and women who have been undermined by eating disorders.  Much needs to be done.  It seems the bottom line is the absolute necessity of getting information from doctors, clinicians, psychiatrists, scientists and other researchers to those who actually are diagnosing and treating individuals far faster than happens now (at the 2010 NEDA Conference I heard the remark that it can take twenty years for research to reach those who practice; this marker has certainly been reduced thanks to the internet, devoted scientists, and determined advocates) combined with the requirement that all in this field -- in fact in any aspect of the mental health field -- be recertified to demonstrate that they are current with findings and implement them for those in their care.

Dr. Thomas Insel, Director of the National Institutes of Mental Health, suggested a recertification requirement in his presentation to those attending the F.E.A.S.T. 2011 conference.  By the way, he also keeps a blog and recently revealed that his daughter struggled with an eating disorder.  You can find more about him here.  Also, here (NYT article).  He's been a wonderful advocate to many.
I will close this personal response to Laura's concept of the ideal Complete Spectrum of Care by describing (since the image disappeared) five concentric circles, the innermost one being the patient .... or actually in an ideal situation I would call them human cells, as it were, with permeable membranes so that information flows freely between and among all components, the components (from outer to inner) being the law, the community, the professionals, the family, and the patient.

So, how does a person determine whether or not the information that appears in research documents, published papers, reports at conferences,  the media and so on is valid?  Why treatment at one facility might correctly be characterized as more effective than at another?   What conditions must be met to assure us that the data are correct so we know, for example, that x protocol is better than y, or that Family-Based Therapy is effective?

To better understand these and other questions, I looked forward to attending Siobhan McGurk's presentation, augmented by informational slides including this checklist

(Siobhan McGurk, 2014, used with permission.)

of what to look for when reading a paper as well as a hilarious example (you'll need to view the video to get the full effect of the laughter that followed) of how an unsuspecting individual could reach a preposterous conclusion about the cause of Global Warming.  I think the expression is, "correlation does not equal causation."  If anyone was asleep at the beginning of her talk, certainly that slide and the laughter woke them up.

McGurk's talk, "It's Elementary: Decoding the Evidence in Evidence-Based Medicine, a How To Guide" was designed to show us how to read and make sense of the literature.  She walked us through definitions, illustrations, examples of abstracts as well as papers, and explained contents, language and symbols used such as p value.  She explained levels of evidence; the differences between types of studies (for example cohort studies) and clinical trials including what she termed the gold standard, which is a randomized control trial and why the RCT is the gold standard.  I encourage readers to access her talk when it appears on the F.E.A.S.T. website.  The information in her presentation will certainly help me to distinguish between results of works in progress as well as anecdotal evidence and valid conclusions that can be implemented to make a difference in treatment and outcome.

A helpful but nowhere near as detailed as McGurk's presentation is this one published by the University of Minnesota - "Understanding Research Study Designs."

I was also surprised and pleased to learn that all medical studies published in this country must be submitted to the United States National Library of Medicine so they can be accessed and read.  The NIH maintains this website.  What a resource and certainly worth a visit.     The Wikipedia description provides extensive information about the purpose of the Library.

Although I did not list this presentation in my initial piece about the conference, I recommend Dr. Kerri Boutelle's overview of Family-Based Medicine, that followed.  Incorporated in FBT is the principle that there are three phases of recovery.  I regularly read Dr. Sarah Ravin's blog and I referred this outline to my family member's treatment team.   Dr. Ravin discussed Phase II here and, in fact, there's a link to Phase III, as well.  Again Dr. Boutelle's presentation was taped and will be available on the F.E.A.S.T. website.  I do want to note there was considerable discussion around the re-feeding topic and the "how" and "what" of it.  Several participants of the conference pointed out that one of the most "popular" discussions on the Around the Dinner Table site is what, how much, and how to refeed.

I've been a frequent visitor to and reader of Dr. Julie O'Toole's blog.  She is the Founder and Medical Director of the Kartini Clinic in Portland, Oregon.  Her talk, "Towards a Definition of State not Weight" provided us with additional information she believes is valuable to understand where a young person is on the road to recovery.

As I've found, often insurance companies evaluate a candidate for treatment (and therefore financial support) based on their weight and/or BMI.  As I've also observed over the years and read in published research papers, not much can be accomplished during therapy sessions without weight restoration so weight has become a key indicator not only for progress on the road to recovery but also payment for and release from the care of a residential facility.  However, what I've also observed, just because weight has been restored does not necessarily mean that the person is recovered or perhaps better worded, in recovery.

Dr. O'Toole believes and is collecting evidence that markers for State are also important and their clinic uses blood tests to determine how the child's or adolescent's biology is doing.  I extracted the following paragraph from her blog of  November 27, 2013 titled "Eating for Life" to explain accurately what the Clinic does and why.

We currently do metabolic testing on all children on admission to our program as part of our effort to understand and work with their individual biology.  Typically, in the case of AN and disorders involving weight loss, we see low levels of leptin, low thyroid hormones (TSH, T3, T4), very low female and male sex hormones (LH, FSH, estradiol, testosterone), low zinc levels, low nutritional markers (C3 and total T3) -- all at levels consistent with starvation.  And typically, as we track them through weight restoration, these levels come up to normal and the child -- if a girl --  either initiates or resumes menstruation. Boys get their testosterone back and with it their energy.  That is, some boys and some girls.  Others however, depending no doubt on their genetics, go off the rails in a couple of ways.  Some develop insulin resistance and post-prandial hypoglycemia, others develop apparent leptin resistance.  Some have stubbornly low leptin levels that act as a “stop!” signal for return of female hormones (no LH surge, low estradiol).

As Dr. O'Toole continues to make a case for the necessity of these markers, perhaps doctors and medical personnel involved in the treatment of those with anorexia and other eating disorders will also include these tests and eventually a study can be conducted to evaluate the necessity of adding these and perhaps other markers to the list of what could be considered a medical description of a return to a nourished state.

My aside scribble in my notes is a suggestion that an endocrinologist be added to the team of an individual receiving FBT or to the team of an adult receiving outpatient therapy as well as to the staff of facilities that treat eating disorders.

After another wonderful lunch, this time of salmon, we returned to hear Colleen Wise, a Parent Advocate, discuss "How to advocate/educate while telling your story."  As an aside, I've struggled in the past with what to include in any presentation I make as an advocate about the effect of an eating disorder not only on our family member but also on our extended family.  I've considered that my family member's story is really her story, not mine.  Yet none of us in the family can truly extricate ourselves from the effects of the eating disorder on a person who we all have known since birth, who we love dearly, and about whom we have wonderful and funny as well as now in fact terrifying and sad memories.

So often we must advocate for another stay in a hospital or in a residential facility or in a facility that offers outpatient care.  I remember responding to a friend that the cost for residential averaged (this was several years ago) $1,000-2000 a day!! and watching her jaw sag in disbelief.

Thanks to organizations like The Eating Disorders Coalition in Washington, DC, there are now organized opportunities to advocate for our loved ones before members of Congress as well as at the State level thanks to the National Eating Disorders Star Program that brought me to Phoenix.

There are opportunities for us to speak out when we see an advertisement in the media or hear someone convey misinformation or repeat tired phrases that insinuate blame on the family.

Colleen presented a humorous and also very emotional account of her family's story accompanied by photos.  In Part 1, I concluded with some thoughts on the heartbreak that can occur in families when the eating disorder interferes with the relationship between mother and daughter or mother and son.  This is not uncommon; I've heard this far too many times and from families that were loving and intact until the disorder made its appearance.

Some of Colleen's points included the very important notion of removing anger out of your presentation, to be succinct, take brochures and other informational material (like the F.E.A.S.T. publications), try to find common ground and common goals, and present relevant facts.   I particularly appreciated her suggestions on how to phrase the introduction of information that hopefully would change, for example, a doctor's approach when working with your family member.  I loved her comment that you don't have to be an expert.  I know I can become cowed by authority and fail to make simple informational points that could change the point of view of the leader of a treatment team.  Watching Colleen's presentation and hearing her suggestions was very empowering and very helpful.  I encourage readers to watch her talk when it's uploaded to the F.E.A.S.T. website.

In closing, I again want to thank the conference organizers and presenters, the parents and those in recovery who attended and whose comments enriched our experience, the representatives of treatment facilities who attended, as well as the ever-present moderators on the F.E.A.S.T. Around the Dinner Table website/forum.

Part 2 of 3 of The F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Before starting Part 2  I again want to emphasize that I attended all the presentations and took copious notes.  I've selected those to comment on here that provided subject matter I specifically wanted to learn more about.

Looking at the subtitle of the conference -- Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders -- I decided to start with the last session of the conference first and focus on one of the messages I gleaned from a wide-ranging discussion during "A Family's Recovery Story" presented by Julia and Sonja Kranz and moderated by Sarah K. Ravin, PhD.  I acknowledge here the tremendous courage and willingness of this family, especially of Julia, to share her recovery story.  I was privileged to sit with them during a meal and to listen to more of their story - of a mother and her daughter.

The message I received and that Laura Collins Lyster-Mensh also highlighted  (Laura's was much more comprehensive) in her presentation titled "An Advocate's Vision for a Complete Spectrum of Care" jumped out at me [the following kind of thing has stood out for me often while reading a variety of works during my family member's journey] when I was  reading Walter Isaacson's outstanding biography of Steve Jobs.  Chapter Forty-One Round Three - The Twilight Struggle includes the story of Jobs' revelation of "....facing a problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach....  'One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,' Powell [a member of his team] said."  [Steve Jobs by Walter Isaacson, Simon and Schuster, New York, NY 2011, pp. 549-550.

Julia's experience included the work of an ever-present and apparently expanding team of people at the Mayo Clinic where her mother, Sonja, is a staff Occupational Therapist.  Starting with Julia's pediatrician who followed her from birth, Julia with her mother's loving persistent advocacy, received the continuum of care that was necessary in her recovery from what her doctor observed to be the most severe case of anorexia reportedly he'd ever seen.  Julia described how her team would meet weekly to review all aspects of her illness.  The team also considered other aspects and brought others on board as needed.  Fortunately for her,  each team member had the additional option -- and used it -- of accessing her file and bringing themselves up to date on what was happening in each discipline at every step.

Julia and Sonja chose not to focus on Julia's behaviors while she was ill during their presentation but rather to discuss the high and low points of her treatment, her co-morbidity of OCD and her progress.  Ultimately, though, I was struck by the importance and presence of a rather incredible team approach and its willingness to completely involve Julia and her mother.  This is the concept of a continuum of care and Family Based Therapy, I believe, should look like for anyone in treatment with an eating disorder.

I posted about the need for a team on my blog and repeat here the observation that all members of the team, if not united in the fashion of Sonja's or my family member's teams were, must agree to communicate with one another on a frequent basis.  If the individual being treated is an adult, the family/advocate needs to obtain signed releases of information so that all team members can communicate.  More often than not I have found myself, as I know other parents and family members have found themselves to be, that quarterback.  It's exhausting but can also be quite rewarding.

Now I'll turn to Friday morning, the first day of the conference, and to Laura Hill, PhD, FAED, President/CEO/CCO, Center for Balanced Living, Worthington, OH, who presented the keynote following Executive Director of Feast Leah Dean's welcome.  As her bio for the conference notes, Dr. Hill together with Dr. Kaye at UCSD are "....working to transform clinical interventions into biologically based tools for patients and their families at all levels of care."

Before I share more, I ask that readers watch her TEDx Columbus presentation of 2012 because the 18 minute video provides the majority of what she said.   I'm going to talk about/reflect upon those aspects most significant to me.

Hill's presentation was a revelation to me and the continuing long breakfast conversation among those of us at her table the next morning reduced me to tears when I spotted Leah Dean shortly afterwards before Saturday's program began.  Tears, because I felt that another layer of the proverbial onion had been removed so I could better understand what my family member experiences and because part of me wishes that I and her team had known this information and the disease's probable affect on her from the get-go (25 years ago).  But we're here and it's now and I do hope that other parents will take the time to learn more about the disease from a neurological point of view.  I particularly liked the story about the dad who helped his daughter navigate dinner out.  I know that my family member appreciates having a copy of the menu before walking into a place.

We were reminded that responding to an eating disorder as one would, for example, to diabetes helps one to step back and understand this as an illness/disorder and not a choice.   The brain pathways of one with this disease do not communicate in the same way as those who do not have the disease.  The bottom line is your loved one cannot "just eat" or "listen to your gut" because her signals aren't using the same pathway as yours and/or they're different and perhaps even aren't felt. When s/he eats s/he has a different reaction to food.  One might also say, as do those who have the disease of alcoholism, that the person is "allergic" to food.  However, as I posted recently in my blog, food is life.  One can quit alcohol and/or drugs because these aren't necessary for life; one cannot quit food and continue to live. 

S/he needs help through therapy (think of Cognitive Behavioral Therapy or CBT or Dialectical Behavioral Therapy and focus on the word behavioral for a moment).  S/he needs to learn to think in order to manage feelings.  For many of us, it's not natural for us to think first and then act; often, we act first and then think.  Again, s/he needs to learn to think in order to manage feelings.

However, until your loved one has become re-nourished and stabilized  her brain most likely isn't going to be able to utilize any kind of therapy so the first steps, as outlined in this new F.E.A.S.T. Family Guide to Eating Disorder Treatment - How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S. , again are (p. 3)

1. the interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan

Once these steps have been taken, then it's important to remember as revealed in the video linked above that her (and I'll stick to "her" from now on but emphasized s/he because boys and men get eating disorders, too) brain gives her different messages or even none at all (a weak or perhaps no signal from the gut) than you or I receive while eating.  Anorexia can flatten or even remove taste.  Those with bulimia often experience the first bite as tasting wonderful but subsequent bites not at all or vaguely similar so they start to "chase" after the taste sensation (and pleasure) of that first bite.  And, they often cannot sense that they are "full" until they've had practice focusing on what "full" feels like.  They need to learn how to compensate and more importantly they need to understand that it's not their fault.  And, parents, it's not your fault, either.

Dr. Hill also observed something that I lived during my early recovery and that was my discovery that I could maintain my recovery and progress by sticking to a very simple/few item meal plan.  I've never quite understood the practice of treatment centers laying out multiple choices in a buffet style and expect those in early recovery to be able to make choices.

What really shocked me was Hill's demonstration of the noise that can accompany eating.  I finally understood what my family member meant when she told me that as she returned to what had been determined to be a normal weight for her she could no longer read fiction because the chatter in her head got in the way.  I asked her, because it's been evident that she hasn't been psychotic, what she meant and she simply said she could not concentrate because of the noise.  I didn't understand what she meant; now I do.

Having watched the video, I suspect the reader has a greater appreciation for why not eating/staying hungry creates a much "easier" state for the person to remain in.  Being anxious is very difficult.  Eating has been found to vastly increase anxiety.   For those who are interested in another view on anxiety, I refer you to the revealing article titled "Surviving Anxiety" by Scott Stossel, the Editor of The Atlantic, a magazine I spotted on a rack at the airport before boarding my plane last Thursday.

The sequence of presentations clearly had been planned, for the next presentation of the morning was "Is there a role for DBT in the treatment of adolescent eating disorders? Who, When, How?" by Lucene Wisniewski, PhD, Clinical Director/Co-Founder Center for Eating Disorders, Cleveland, OH.

DBT is an acronym for Dialectical Behavioral Therapy.  There's a specific definition and protocol for this type of therapy that was first developed by Dr. Marsha Linehan for the treatment of suicidality and Borderline Personality Disorder (BPD) which she later revealed that she'd been diagnosed with herself.  If you want to learn more her and her revised view of the disorder of BPD, I recommend that you go this link.

My family member had been receiving a variation of DBT from an eating disorder specialist for many years but made little progress.  Last year her previous team leader found a therapist who is certified in DBT and adheres to the components of the therapy including - and this is very important because the person with Borderline Personality Disorder (BPD) can and will often overwhelm their therapist - having a therapist of her/his own to review progress with clients and the methodology.  I've written several posts on my blog about  BPD and read several books, as well.  Given that many of the behaviors that appear when one is in the thick of a battle with the ED resemble those of BPD, DBT is currently endorsed to be an effective therapy for those with eating disorders.

Dr. Wisniewski reviewed the basics of DBT and discussed its application for those with a diagnosis only of eating disorders including mild bulimia and binge eating disorder.  She also touched upon its use for those with more serious entrenched eating disorders who have also been diagnosed with multiple morbidities, for example Borderline Personality Disorder.

She explained that dialectical refers to thinking two things, often opposite, are true at the same time - for example, remembering what was described as noise above, "there's lots of noise and you still need to eat."  The therapy focuses on problem solving and skill building; it embraces both validation and change.  The goal is to think and behave differently.

Basically, as Dr. Wisniewski stated, BPD is a disorder of dysregulation and the dysregulation occurs in the person's emotions, interpersonal relationships, self - often the loss of sense of self, behavior, and cognition.  The person may often say "I don't think clearly."  Think about this and reflect upon what Dr. Hill said above and how much more difficult life must be for one with an ED and BPD.  This is relevant because many times those with ED also have BPD traits or even the full blown diagnosis and a careful analysis is a good idea if the thoughts/behaviors do not go away when weight has been restored and the person's state is determined to be in recovery.  [Incidentally, one of the best books I've read about BPD is Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, MD and Patrick Kelly, MD published by the Johns Hopkins University Press, 2011.]

Wisniewsky asked us to remember that patients and parents are doing the best they can; all want to improve, all must learn new behaviors in all relevant contexts, and finally that one cannot fail at DBT.  The treatment team or therapist may fail a person who needs it, but the person  does not fail.

The protocol for DBT is important.  If a parent or family member is looking for someone to provide DBT, they must use these classical primary modes and in the case of someone with an eating disorder they must be able to meld the modes effectively with those for the treatment of eating disorders.  I might add here that add to this certification in Family Based Therapy, and everyone wins.

The modes used by the DBT therapist are:

1. individual therapy with family involvement in a safe environment
2. group (i.e. interpersonal) skills for the individual
3. telephone coaching aimed to decrease crisis behavior and sense of conflict
4. team consultation/therapy for the therapist
5. a six month commitment

In closing this section, Dr. Wisniewski presented a valuable argument for the use of DBT.  Frankly, I wish I'd known about DBT almost forty years ago when I was recovering from bulimia.  I often use tools that my family member has learned and passed along to me when things seem to get out of control and they work!

The Wellness Recovery Action Plan - W.R.A.P.

Almost two weeks ago, as I was sitting in a Crisis Center Emergency Room, a peer counselor started a conversation with me and introduced me to a program I'd not heard about before called the Wellness Recovery Action Plan.  I have since learned that this program is being used in other countries and is gaining traction in the United States as well as in my own community's mental health teams.

Here is the link:  http://www.mentalhealthrecovery.com/wrap/

The peer counselor handed me his copy of the manual (can be ordered on line) so I could browse through it while I was waiting.  My brief cursory review told me three things:

first, that the program actually is quite simple, straight-forward,and relevant;
second, that I might even be able to use it for myself, as a parent; and
third, that the forms included in the manual can be copied and used.


I ordered the manual and will write further, have adopted some of the practices, and wanted to provide another avenue to get this information "out there."  The acronym KISS comes to mind in a good way.

Back to Basics

I haven't been inclined to post lately, mostly because I've had nothing new to write about and have set an intention that I'll share new information here rather than rehash old stuff.

However, this past week I was again reminded that people who are not fully versed in eating disorders (by fully versed I mean eating disorders are their main focus rather than a subset of, for example, brain disorders/mental illness) forget a basic principle.  I'll get to the principle in a moment.

I thought of this principle in frustration the last few days and know that behind this basic idea is the message that the film Someday Melissa and other media continue to remind us of:  bulimia can be invisible except to the person who has this eating disorder.   (The blog linked within the site for Someday Melissa includes this post revealing that well known people like Lady Gaga, Katie Couric, Sally Field, Jane Fonda and Jessica Alba have fought this, as well.)  I know it was for my parents; they didn't have any idea.  I know it was for me when my family member seemed to be better for six or seven years before the relapse.  I know the seriousness of bulimia can become less visible to a treatment   team when they are looking mainly for weight loss.  Why?  because often, those with bulimia maintain a steady weight and appear okay; because often, those with bulimia carry on their binging and purging in secret and the effects can be invisible except to those who know what to look for.  The side effects of bulimia can and do kill.

The National Eating Disorder Association provides a helpful/informative summary here.   Re the effects of bulimia on teeth, I believe destruction of teeth not just staining would be important to add.

Years ago at the Grand Canyon I remember noticing a sign posted somewhere (I think at the South Rim) that says, "Water is Life."  Without water one can die on the trails of the Grand Canyon.  Without water, one can die.

Well, food is life, too.  Without food, life dies.

A drug addict or an alcoholic can quit the drug or quit the alcohol and continue to live.  This decision can be more difficult for some than others, but they can quit.  Those who have managed to quell these addictions and maintain recovery sometimes believe that those with eating disorders should be able to quit, too.  Straight forward thought but misguided. 

One cannot quit eating food and continue to live.

Overcoming anorexia is hugely difficult but can be done, especially if the family of the person allies with their relative to seek assistance to overcome it early.  Overcoming anorexia subtype bulimia is also hugely difficult because the anxiety and the fear of food is still there but in addition the person has developed an addiction to binging and purging that leads the person to eat the very food(s) s/he is afraid of.  A vicious cycle. But not insurmountable.

Recovery is possible.  Habits can be broken and these diseases can be overcome.  How?

To quote Sarah Ravin in her excellent post "Expanding Our Minds:  Towards a Biologically-Based Understanding of Eating Disorders" of January 18, 2014:

".... behaviorally-based psychological treatments focused on symptom management and skills building can be very effective, in large part because they change the brain [emphasis mine]."

One effective treatment for bulimia is dialectical behavioral therapy (DBT).   Dr. Ravin writes,

".... CBT and DBT are forms of psychotherapy which involve a relationship with a therapist who instills hope, provides support and feedback and accountability, promotes awareness of thoughts and feelings, and teaches adaptive skills for managing life’s challenges."

I encourage adults and older teens who are fighting bulimia to take a look at Kathryn Hansen's book, Brain Over Binge.  I reviewed this book here on my blog.  Again, one can change the pathways in their brain and learn new healthy behaviors.

Family members can be allies here, too.

I again refer the reader to Dr. Shari Manning's book, Loving Someone with Borderline Personality Disorder.  Although the book is written for family members and friends of those with BPD, in fact the information and skills provided helps family members ally with their loved one against bulimia.

My closing question is this:  how does one solve the "food thing" as a transition for an adult who lives independently?

Food is life.

"When Anorexia Came to Visit" - Reflections by author Bev Mattocks

[My recent trip to Phoenix to speak about my experience as a parent of a family member with an entrenched eating disorder on the lawn of the Arizona State Capitol came about because another parent, the mother of a son who was diagnosed with an eating disorder, could not attend.

I was grateful for the opportunity to talk from the perspective of a parent who continues to leave no stone unturned to provide a path to recovery given that my family member, now in her 40's, did not have health insurance when her second round with an eating disorder began.

Yet, there's a perspective that not many people are aware of and that's of a parent whose son has anorexia.  Yes, boys and men do get eating disorders. 

So, I asked Bev Mattocks, the author of Please Eat ... A mother's struggle to free her teenage son from anorexia, if I could post here her recent remarks about her new book, When Anorexia Came to Visit, families talk about how an eating disorder invaded their lives.  Her upcoming book speaks to the many myths about eating disorders such as eating disorders are a choice (they are not) and to the necessity of screening youngsters for this biologically based brain disorder as well as early treatment for as long as necessary.

Her upcoming book puts voices to and provides powerful stories about 20 families whose lives were turned upside down by this disorder.  Their stories are important; their stories will make a difference.  

She said, "yes" and I'm turning this post over to her.....]

"A huge thank you to "my" 20 wonderful, generous and courageous families!

I continue to be immensely grateful to the 20 UK families that have contributed their stories for my new book When anorexia came to visit, families talk about how an eating disorder invaded their lives. But you'll have to wait a month or so before it's published. In the meantime, here is the draft introduction to give you a taster and to show how wonderful these 20 families are...


The second chapter of my book Please Eat… A mother’s struggle to free her teenage son from anorexia begins: "We should have picked up on it sooner."

The question is: could we - or any of the families I interviewed for my forthcoming book When anorexia came to visit - have "picked up on our child’s eating disorder sooner"?

When I first took my 15 year old son, Ben, to visit the GP at the end of September 2009, the signs of an emerging eating disorder had been clearly evident for some months.

The problem was that none of us recognised them.

Even before the signs emerged, the eating disorder was busy germinating deep in the inner recesses of Ben’s mind. He says he can trace it back to at least 12 months before, if not earlier.

The fact is that you don’t expect your child to develop anorexia or any other eating disorder. You don’t expect it to happen to your ordinary, happy, close family. And, in our case, and a couple of the other cases in this book, you don’t expect it to happen to your son.

Anorexia isn’t like a normal medical condition where recognisable symptoms are there for all to see: a broken bone, a worrying lump, blood loss or whatever - the kind of issues that GPs deal with on a daily basis. And, although eating disorders often feature in the media, they rarely focus on the lesser known signs and symptoms, preferring instead to major on shock tactics such as stereotypical skeletal photographs. On top of this there is the popular misconception that eating disorders are "caused" by anything from bad parenting and size zero fashion models to faddy eaters and even private schooling (how many reports begin with: "Privately educated XXXX…" ?)

So, during the early months as the illness began to manifest itself, none of the families in When anorexia came to visit had any idea what they were dealing with. Nor did their children. I mean, it’s not as if my son sat down one day and decided to "get anorexia". He was as clueless as any of us. And, anyway, these days we know that anorexia is a biological illness, not a lifestyle choice.

But we didn’t know this back then.

Indeed none of the families in this book fits the stereotype of the dysfunctional family with the child who is going off the rails and chooses, perhaps as a "control thing", to starve themselves to death. Before anorexia came to visit they were just ordinary happy families living ordinary happy lives. And our children were normal. So there was no reason on this planet why any of us would be watching out for the classic signs of anorexia. This is why we couldn’t have "picked up on it sooner" unless we’d known what to look out for.

None of us knew that a whole package of horrors comes with an eating disorder. It’s not just about cutting back on food and losing weight, it’s about crushing depression, vicious mood swings, violent self-harming, suicide threats and social isolation as your child transforms into someone you don’t recognise, right in front of your eyes. Our son even developed a different voice: a slow, low, deep monotone that used to chill me to the core.

We weren’t aware that an eating disorder creeps up on its victim ever so slowly, so slowly that it’s almost undetectable until it’s got a firm hold. We didn’t know that, in the early months, an eating disorder can disguise itself as a passion for healthy eating and / or exercise, or a passion for cooking. Or, in the case of our son Ben, all three.

None of us knew of the devastating effect that anorexia would have on the whole family - from the sufferer themselves through to siblings, parents, grandparents and the extended family. Not just for a brief few weeks or months, but sometimes for years.

And we didn’t know that you don’t always have to be a skin-and-bones skeleton to have full-blown anorexia.

But despite our obliviousness to the early signs, most of the families I interviewed expressed feelings of intense guilt. "Why didn’t we notice what was happening?", "Why didn’t we act sooner?" and "Why didn’t we trust our gut instincts that something was wrong?"

And herein lies another problem.

In the making of this book I talked to GPs, medical students, even the Royal College of General Practitioners, and there seems to be very little formal training in eating disorders. Our local GP said she "probably had two lectures" as a medical student at Cambridge.

The thing is, when you take your child to the GP, you expect them to know what’s wrong and take action. So, when a GP fails to identify an eating disorder or assumes it’s "just a teenage phase", you begin to doubt your own instincts.

And, meanwhile, your child can be in complete denial that there’s anything wrong. So sometimes it can be just you, the parent, fighting a lone battle to get your child diagnosed and referred.

Thankfully, once referred, most of the families in this book saw a specialist treatment team like CAMHS (Child & Adolescent Mental Health Services) very quickly, sometimes within the week. Out of all the families in this book I think we had to wait the longest. It was four months before we saw our local CAMHS and only then because the assessment was expedited when Ben’s pulse plummeted to 29 and he ended up wired to machines in the cardio unit of our local hospital.

One of the many reasons why I decided to write this book is because I wanted to see how our story (described in my book Please Eat… A mother’s struggle to free her teenage son from anorexia) overlaps with other families’ experiences across the UK.

Of course each family’s circumstances are different. Yet so much of what we’ve experienced is similar. Not just in terms of the warning signs but in the way the illness transformed our children into people we scarcely recognised, mentally as well as physically. And, of course, the sheer uphill struggle of trying to get them to eat again.

In this book you will read some truly uplifting accounts: those stories where intervention was swift and the illness was tackled by a highly coordinated and focused team of clinicians using the latest evidence-based treatment.

But you will also read about families who experienced the other end of the spectrum - the "could do betters" of NHS mental health services. With these families recovery didn’t come as quickly; some are still a "work in progress".

I often wonder where we families would be now without the power of the internet. Would we still be totally ignorant of the latest evidence-based treatment? Would we simply accept the outdated notion that eating disorders have to last for several years, if not forever? Would we still believe that eating disorders "aren’t really about food" and are "a control thing"? Would we still be dragging our children to dozens of pointless sessions as the therapists attempt to identify the "reasons why" the eating disorder developed and talk them out of the illness? Would close family relationships have disintegrated as parents, wrongly labelled at best as dysfunctional and at worst as abusive, needlessly blame each other for “causing” the illness?

There is an online resource called FEAST (Families Empowered & Supporting Treatment of Eating Disorders), originally set up in the USA by Laura Collins, author of Eating With Your Anorexic (who was kind enough to write the Preface for this book) and nowadays operating globally via the power of the internet. FEAST and its online forum, Around The Dinner Table (ATDT), is run by parents and carers for parents and carers. Today FEAST is widely respected by some of the world’s leading eating disorder professionals and its website is a mine of information on the latest evidence-based treatment, research and resources. Thanks to FEAST and other resources like the UK eating disorder charities, BEAT and ABC (Anorexia & Bulimia Care), families can educate themselves about the latest advances in the treatment of eating disorders in a way that was previously impossible.

The ATDT forum is a place where families can come and feel immediately welcome, among families who understand exactly what they are going through and who can offer support. Here in the UK alone we have established a truly awesome network that works with other charities like BEAT and leading eating disorder experts to advocate better treatment for our children and enhanced support for parents and carers.

Virtually every family in this book says that FEAST and ATDT were lifesavers. It is also thanks to the people I’ve met through FEAST and BEAT that I have been able to gather together these 20 powerful, insightful and challenging stories.

Through this book, we want to show other families that they are not to blame for their child’s illness. Eating disorders are biological illnesses, not lifestyle choices. And, yes, eating disorders are about food - lots of it, being administered by strong, loving, dedicated families who are refusing to accept that their beloved children are "in this for the long haul". We know that you can’t "talk someone out of an eating disorder"; you can’t wait for someone to "want to get better". And we recognise that parents are a vital part of a successful, highly coordinated treatment team. We are part of the solution, not the problem.

We want to show other families what is "normal" in the world of eating disorder behaviour. Distressing and terrifying, yes, but relatively "normal" for a child in the iron grip of anorexia. And also what is normal as the brain begins to get re-nourished and gradually heals and returns to its pre-anorexia state.

We also want to show that, no matter what you are going through, other families have been through it too - and successfully come out the other side.

Getting your child through an eating disorder is one of the toughest and most distressing things you will ever do as a parent. But re-visiting painful memories is unbelievably tough, too. Yet each of the families I interviewed for this book willingly volunteered to come forward and describe their own struggles with anorexia. Not only did they agree to talk frankly about their experiences, they agreed to read through the various drafts I sent through for checking. In other words, being involved in this book meant having to re-visit distressing memories not once but several times over. This takes courage and commitment. It also demonstrates how much these families care about others - families they have never met who will read this book and hopefully draw inspiration, strength and knowledge from its pages.

This book could never have been written without the help of these 20 fantastic families. In many cases all I have done, as the author, is edit the transcript of a taped conversation or tweak a detailed written account. So, strictly, I should be calling myself editor, not author. "My" 20 families have written this book, not me. And I am immensely appreciative of their help, dedication and input.

Of course I must also thank the young people themselves for demonstrating the courage, grit and determination to fight this illness and win. Being a parent is tough, but being someone who has fought to break free from this insidious illness is even tougher.

Our sons and daughters are truly awesome.

And so are their parents.