What about HIPAA and How to Overcome Barriers

In the process of being revised.  3/29/19

The basic information about HIPAA can be found at the following links:
Here is a link to the latest information about HIPAA as it applies to individuals and family members seeking health information.  There is a FAQ link, as well.  Specifically, here is a link for family members.

Here is a link for personal representatives.

Here is a link to a FAQ fact sheet for individuals.

Yet, see below for exceptions.  Know these exceptions.  Know that you have the right to communicate information to your loved one's doctor(s), therapist(s), nutritionist, and psychiatrist, etc.  HIPAA does not prevent you from politely calling/contacting them, noting (especially if a Request for Information has not been signed) that you realize they cannot reveal if they are treating your loved one but you are requesting that they listen to what you are offering about your loved one's behavior, their health, and so forth.  A best practice on your part would be to tell your loved one you are doing this.  

[As many of my readers know, I often comment about articles and/or provide commentary by others when the opportunity arises.  A helpful article appeared in the NAMI Advocate but the link seems to have changed.  I am currently researching the latest links on this topic.]

By now many families with adult children (or soon to be adult children) who are struggling with a diagnosis of an eating disorder and/or a co-existing mental illness have heard of HIPAA - the Health Insurance Portability and Accountability Act.  Undoubtedly, you know about it because any visit to a health care provider by you or a family member includes the requirement that you read and sign a document noting that you understand what the provisions mean.  If your loved one is a minor, you will be included in the conversation but not necessarily included in sessions so your loved one's therapist can build a therapeutic alliance or relationship.

In fact, all too often since this Act came into existence health care providers (physicians, therapists, psychiatrists and others) believe they must not communicate at all with members of an adult person's family unless a release has been signed by the patient; and the term "communication" includes the family providing information it feels is critical for the provider to know.

A groundswell of resistance and objection is building.  There are situations when HIPAA can be bypassed.

This topic was raised during the recent (March 17, 2019) F.E.A.S.T. of Knowledge conference in New York City and it appears that a task force will be formed to investigate and lobby our legislators about this topic.

Here is the latest update found on the NAMI site (2018) re health information sharing.

The Winter 2014 NAMI Advocate  included an article by Stewart Newman, M.D. and G. Ness Matthew Gabay, J.D. titled Understanding HIPAA:  Individual Privacy and Family Communication.  (pp. 20-21)

The authors provided the news that Rep. Tim Murphy (R-PA) "....introduced a bill in Congress that would make families the legal personal representatives of those they care for, so that providers are free to communicate with or without [italics mine] a release of information." (p. 20)

All to often, as I and many others have discovered, many providers refuse to communicate with family members even if the conditions are appropriate.  The authors refer to this as a "culture of silence." They state, and I emphasize in bold, "engaging the family is a therapeutic best practice."  

Providers instead think they cannot and should not communicate at all with family members.  This needs to change and in some cases is incorrect already.

What those of us with family members struggling with eating disorders or mental illness have come to understand is that the adult with a biological brain disorder all too often isolates, will not reveal that they are suffering (to the point of having suicidal thoughts), and sometimes ultimately in despair will try or succeed to take their own life or lives of others. 

Those of us with ill adult family members often are faced with an individual who refuses a recommendation that they seek inpatient or residential care.  I addressed the concept of an outpatient "team" in a previous post and provide a link here.  The bottom line, though, is that all the team members must communicate to be effective providers of care for their client. 

And again, "engaging the family is a therapeutic best practice." 

The authors quote Tom Insel, Director of the National Institutes of Mental Health - "If you look at those things that help to build resilience ... one of the best is simply getting families involved."  Indeed,  the National Alliance on Mental Illness (we have a NAMI chapter here in Tucson and many communities do as well), has been a long-time supporter of family involvement as evidenced by  Family to Family, Back to Basics and other programs offered.  I attended the Family to Family program and "graduated" with a huge amount of information to help me advocate for my loved one and understand her illness and the illnesses of others better.  Check with your local chapter if it offers this class.

So, why is it so darned difficult to break through the walls?

In response to that question, NAMI Oregon - a fantastically active state organization if one looks through all the achievements listed on its website created a Checklist for Parents and Families of People Living With Mental Illness to Assist in Communicating with Treatment Providers.  Here is the link but I notice that it does not have an https classification.  You can access it separately (I just did).  

However, to continue this discussion:  There are three sections of the checklist for parents and families and each asks a series of questions and issues a family must address and find the answers for.  My comments are in brackets.

For example, the first section begins with "For all persons with mental health issues, families should request the following (5) questions.  One is "Has the provider reviewed the records of previous mental health providers and communicated with all others who are involved with the persons' treatment and care (e.g. therapist, family physician, case manager.)"?  
[This question is terribly important because at least in our family's experience, records are kept by the previous therapist or doctor or treatment center and are not released unless there is a signed release by the patient.  Often family members automatically assume that records go along with the patient - not so.  Your family member must sign a release.]

The second section begins, "Where an elevated risk of suicide is identified in persons involved in treatment, families have a compelling interest to learn the following" and an example from the list of 6 questions is, "What is the provider's evaluation of suicide risk in this case?  What are the particular warning signs (not the same as risk factors) for suicide in this person's situation?  What steps should the family take if they see these factors occurring (e.g., taking the person to the hospital for reassessment)?  You may wish to ask the provider to help create a plan to monitor and support the family member.  What protective factors exist, and how can these be expanded or enhanced for this person?"
[The family members have an absolute right to be certain that their adult child is receiving the best possible care and is not falling through the cracks.  If the provider does not know the particular warning signs in your loved one, insist that they find out.]

The third section begins, "When the person is at a university or similar setting, the family may wish to ask the education professionals:" and an example from the list of 2 items is, "What systems are in place to support students living with mental illness and to help them avoid self-harm? ...Are the health service and/or counseling services on call 24/7, and if not, what are their hours?  Is there a 24-hour number to call in case of emergency?"
[The same questions might apply to an individual who is living in a therapeutic community or a group home.]

In closing, as the authors state in their article and I have repeated many times in posts on this blog, "Whether the individual agrees or not, nothing [should] prohibit a family member from speaking with the provider to share information, and nothing [should] prevent the provider from listening."  

As was stated by a mother at the F.E.A.S.T. conference in Dallas (2014), our task is to communicate in a way that opens doors and ears for too many providers still do not understand eating disorders.  We can change that, one step at a time

in August 4, 2015: A bipartisan move by Senators Chris Murphy (D-CT) and Bill Cassidy (R-LA) to introduce the Mental Health Reform Act.  Among the important provisions is to "clarify HIPAA to ensure that families of people with severe mental illness have access to critical information concerning their loved ones."

Update November 5, 2015:  I learned in conversation that a facility can reveal whether or not a family member has been admitted to the hospital or to the ER.  There are guidelines provided on the HIPAA website.  Here's one that may be of use to readers:

Update March 29, 2016:  USA Today published an article on this controversy.  You can read it here.

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/

Progress re Treatment of Eating Disorders?

[So excited to note here at the top of this post the March Against ED on September 30, 2014 in Washington, DC.  This event has united so many organizations intent on bringing attention to this biologically based illness.  For more information go to this link.   AND, watch the video!! ]

The September 2014 issue of the International Journal of Eating Disorders (Volume 47, Issue 6) arrived in my mailbox yesterday.  As usual, I quickly browsed the contents.  I was so struck by the similarity of themes - meaning much work needs to be done - between the quote I provided in 2010 after attending the NEDA conference, and the Abstract of the first article, "The Therapeutic Process in Psychological Treatments for Eating Disorders: A Systematic Review" by Anne Brauhardt, Martina de Swaan, and Anja Hilbert, especially the Discussion, that I highlighted some of the information in the latter as another lead-in quote to my blog.

Much progress has been made in the understanding of the importance of Family Based Treatment (FBT), of the care and nutrition needs early on in treatment of the person with the eating disorder, of the integral part family dynamics (by family I mean the primary social environment of the person) plays as well as of the role of one's environment and especially of genetics and the understanding of the workings/treatment of the brain.

Yet because eating disorders remain one of the most difficult to treat of all brain based illnesses, so much more work needs to be done and all involved in the field including the organizations supporting the dissemination of information need to work together to help those diagnosed with this range of illnesses.  Currently, I believe there remains too much ignorance as well as an attitude of "this way is better than that way" and the only way the community is going to get around these hurdles is by keeping an open mind as well as staying current with the literature and accepting that perhaps their in many cases limited and self-serving approach is detrimental to helping people get into recovery.

I realize my statements may raise hackles yet I continue to note that the agendas (speakers and their topics) of some sessions still seem to ignore - discount? - what is happening in other areas.  I hope this situation will change.  I have added the blog created by Averil Hart's family to emphasize the importance of knowledge and change in the treatment of eating disorders.

Meanwhile, as I've noted in my header, I will be slowly reorganizing my blog and updating where I can to provide a useful resource for parents, especially parents of adults with eating disorders.  I am encouraged to see lately that more emphasis is being placed on how to treat adults and therefore what might work to help them become motivated to change - a wonderful and important development.

Asking for Help - How About a Recovery Coach?

A year ago last January, I wrote a post titled "Asking for Help" and remarked that before release, every single person with an eating disorder who has been receiving treatment in an eating disorder program ranging from inpatient to residential to outpatient needs to learn how to ask for help before going out on her/his own.  I noted the reasons why I thought so and you can read the entire post here.

Fast forward to yesterday's issue of the Sunday New York Times (July 13, 2014) and included is an article in the Sunday Styles section (p. 1) by Marisa Fox titled, "A Guide's Sobering Effect:  Affluent mothers are hiring coaches to help them stay clean in battling their addictions."  I have provided a link to the article here.  I don't know how long the link will be viable, however.

My first thought was what a great idea!  My next thought was, why can't this service (I would call it a profession) apply to anyone who needs to stay clean (whatever that means) or in my terms get into recovery?  My third question was, how expensive does this need to be?  And my fourth question was, could this service profession be covered by one's health insurance policy?  Of course lots of questions (and answers) could pour forth, but the fact is, a recovery coach skilled in the field of addictions and similar disorders the behavior of which becomes entrenched in brain pathways is needed for all sorts of reasons, including eating disorders, for example bulimia.

Fox refers to these coaches as "sobriety coaches, ....sober companions and recovery therapists.  Her article lists/points out various facts that many of us who have family members or friends recognize easily, especially for those of us, like me, who have a family member whose disease has been ongoing for more than 25 years.  For example, one person in recovery remarked, "....addiction is a disease of isolation.  I would have loved to have someone come over and help me not get drunk."

And, as one of those who utilized a coach noted, "I found it hard to function in the real world in a sober capacity without the protective cocoon of a rehab....It's like reading a book on how to swim, and then jumping into the ocean.  Having a companion with me at all times allowed me to transition, so I didn't drown."  She went on to say, "I had been on chemicals for more than thirty years....It takes a while for the brain to normalize.

Scientific research is revealing the process of recovery from an eating disorder takes a long time, particularly for the brain and particularly for those who have been entrenched for quite awhile.

So, I put this idea out there again with the NYT article as a backdrop.  Within the last year I did contact an agency and arranged, with my family member's consent, for a person to serve somewhat in this capacity but more like a companion than a coach.  My family member ultimately rejected the idea because apparently she is still under the control of her eating disorder and unable to change her behavior(s).

Sometimes, as much as a parent and especially a parent of an adult would like to completely fill the role of getting their family member into recovery, the role needs to belong to some other person who appears more neutral (this idea has been the subject of many writers).

The idea of an actual recovery coach, sober companion and/or recovery therapist takes this a step further and I am certain could be utilized to set up a program for those people who desperately want to get rid of behaviors that are undermining their ability to live a better life. 

"Their Battle for Their Recovery"

The arrival yesterday in my mailbox of Marjie Ruth's latest post could not have been more timely.  As usual, I remind readers here that my posts are directed towards family members and friends of adults with eating disorders.  As a friend of mine has said many times, we can shine a light on the path and on the opportunities yet ultimately the decision, as Carolyn Costin writes, to get on the path to recovery is up to the person with the eating disorder.  I often say I am an ally but, in fact, I am not the warrior.    Here's Marjie's latest post including their meeting information in case a reader is from the Tampa area and wants to take advantage of the meeting offered:

No one can make you get better.

 The battle for recovery is not between you and me.

 It's not between your eating disorder and anyone else.

 The battle you have to fight to get better is inside of you.

 The battle you have to fight is between your healthy self and your eating disordered self. 

~Carolyn Costin

Dear Family & Friends of the Eating Disordered (ffed)

Summertime is upon us and that means that vacation season is now in full swing. So please let me know if you're planning to attend this week's meeting at 7:00 PM on Tuesday (June 3rd) in Tampa at the Hyde Park Counseling Center on Verne Street in Tampa. Everyone is welcome. The ABA 12-step meeting for those battling a disorder will be meeting at the same time, same place. If you need driving directions, go to www.HydeParkCenter.com. All are welcome. The only cost is the time and energy it takes for you to get there!! Trust me: it's well worth that price. 

This week's quote is by Carolyn Costin rings so true because it is penned by a person who speaks from personal experience as she is recovered from a serious eating disorder. Carolyn not only has fought the tough battle and won, but also she has gone on to become a highly credentialed treating professional and opened her own eating disorder treatment program which has now expanded to 8 locations (MonteNido.com). She has also authored eight very well received books, including Your Dieting Daughter and The Eating Disorder Sourcebook.

And why have I chosen this quote which was obviously directed at someone with an eating disorder, as opposed to a caring family member or other loved one? Because I think what Carolyn has said makes a powerful statement to us about where we stand in the battle our loved one is in with an eating disorder. So, from the start, please note that we aren't in a battle with our loved one's ED. We might be having constant wars with our own emotions as we struggle to handle the upset that comes our way because of the presence of the eating disorder in the life of someone we care about. But we are named "No one" in this quote because:

"No one (that's you & me) can make you (your loved one) get better."

Try as we might, it's beyond our power. And any sustained effort we might exert to try to force the issue, is more than likely to back fire and only make things worse. 

"The battle for recovery is not between you and me."

...it only feels that way. The more involved we are in trying to orchestrate their recovery, the more we become the target for their emotional outbursts. Some of it is because of the struggle for control. ED's are all about your loved one's personal struggle to cope with frightening or unsettling emotions. It's all about control, however false that sense of control might be. When we set up an emotional tug-of-war in which nobody wins.

Because the battle that needs to be fought is within the person and against their disorder, our task is to discern where we may have crossed over a healthy line and to figure out how to extricate ourselves from the melee. That usually means discontinuing any enabling actions on our part and disengaging from any co-dependent behaviors. It may not seem like enough, but steps like these go a very long way in helping to clear the way for a more healthy perceptions for all, which is fertile ground for real healing.

Whether you've only recently discovered that your loved one is dealing with an eating disorder or the war is an old one with significant recovery or perhaps it's a relapse that has your world spinning out of control, figuring our just where your place is in the "conflict" is a vital step. Knowing and accepting that you are not the person in any way in charge of, responsible for, in control of, or able to resolve your loved one's ED is a huge step for both you and your loved one. 

And even if you had learned this lesson previously but needed a refresher, this quote is the admonition for you!!

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

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.

F.E.A.S.T. Conference 2014: Remember to Take Care of Yourself, Too!!

March 28 2019

A few years ago, I flew to Dallas to attend the 2014 F.E.A.S.T. Conference, Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders.

Three of the speakers - two presented together - focused on a critical aspect of the Circle of Care; namely, the caregiver(s).  This topic is often overlooked because so many of us are focused on the Knowledge Base rather than on the Circle of Care.  However, without a strong Circle of Care -- whether it's composed of mom, dad, partner, aunt, uncle, brother, sister, grandparents or friends to name a few -- the well goes dry.

Those of us who make up that circle must take care of ourselves.  So, how can we do that?

I attended the session titled "From Hopeless and Fearful to Empowered Caregiver!" by Becky Henry, CPCC, who is the Founder of the Hope Network, LLC and a member of the F.E.A.S.T. Board of Directors.  The second session, presented by  Karl and Ellen Kregor,  the grandparents of a young woman who attended the conference, was titled "Extending the Circle of Care: how can extended family support a loved-one with an eating disorder".  [I wish I could have attended both and I look forward to watching the video of the Kregor's session.]

I've written previously about the enormous responsibility taken on by parents and other family members and friends who step up in one way or another to ally with a person who is fighting an eating disorder.  I've written about my own recovery, both in terms of learning how to advocate for my loved one in a healthy way - i.e. taking care of myself; as well as my own recovery from bulimia more than 35 years ago.  If you've been reading my and others' blogs, you probably have seen terms and phrases like in the trenches; post-traumatic stress disorder;  it's a marathon, not a sprint; help! 

Emily Long, LPC, developed a list, a link to which is no longer available, about Extreme Self Care (which is also the title of a useful book of the same title by Cheryl Richardson - The Art of Extreme Self Care).   I've reprinted Emily Long's list of 100 items below.  Many of these suggestions are on my own list and I've added a couple more.  One of the first things Becky Howard asked us to do at the start of her presentation was to make a list of what we do for self-care.  Did you know that smiling releases endorphins?  that laughter does the same thing?  Even if you don't feel like smiling, smile.  I always feel a shift; I'm pretty sure you will, too.

As family members, our goal is to identify things we can do -- if only for a moment or a few minutes, or an hour, or an afternoon -- to take a break.  To re-nourish our spirits and our bodies.  To reconnect with our own support system.  Frankly, I truly believe it's impossible to carry on without these kinds of activities.  Some of the suggestions are beyond the means of some readers; others just aren't possible given time contraints.  But, all offer a way to disconnect, recharge and take a long drink from that Well, the gathering place for women over the ages.

Post the list where you can see it!   On the refrigerator, on your mirror, by the front door.

Thanks to a meeting I attend just about every Saturday, I've learned the acronym H.A.L.T.  It's a reminder that if I am hungry, angry, lonely or tired, I need to halt what I'm doing and take a break.  Here are some ideas:

1. Naps
2. Massage
3. Have an Adventure Day
4. Read (easy, fun reads though, not self-help or professional books!)
5. Snuggle with the cat (or dog or baby or kids)
6. Hugs
7. Long walks and/or hikes
8. Bubble baths
9. Movies (again, easy watches – not horrific documentaries or violent battles or super sad ones that remind you of your own losses)
10. Order dinner in (or have someone else make it)
11. Say no
12. Buy yourself flowers
13. Sip a mug of hot, soothing tea
14. Play in the snow
15. Dig your toes into the sand (dig your toes in the grass.  Remember the movie Pretty Woman?)
16. Feel the sun (or rain) on your face
17. Hold hands
18. Meditate
19. Get a facial
20. Listen to your favorite music
21. Make a delights list
22. Do something on your delights list
23. Repeat above (over and over)
24. Acupuncture
25. Snuggle with your partner
26. Have sex
27. Journal
28. Turn off the computer, cell phone and TV for 24 hours
29. Go on a retreat
30. Sit and people watch
31. Garden or even weed!
32. Do something creative (draw, knit, crossstitch, paint, cook, write, color, make a collage, etc.)
33. Daydream
34. Dance with a child
35. Have a Harry Potter movie marathon (it’s a personal favorite!)
36. Take a mental health day from work
37. Keep your daily to-do list to 3 items or less
38. Swing on the swings
39. Have energy work done
40. Have a laugh fest with your best friend
41. Eat simply
42. Break up with your TV
43. Allow yourself to cry and experience your emotions
44. Join a support group
45. Get a pedicure (or manicure)
46. Tell yourself “I love you”
47. Browse your favorite bookstore (or music store)
48. Have a game night with friends
49. Write thank you notes to those who have touched your life and inspired you
50. Spend the day exploring your town – go places you don’t normally go
51. Practice random acts of kindness & senseless acts of beauty
52. Write a love letter to someone you love ( doesn’t have to be a partner)
53. Write a love letter to yourself
54. Have a “Freedom from Self-Improvement Day”
55. Listen to Holosync
56. Color (try going outside the lines – its fun!)
57. Keep a gratitude journal
58. Talk a walk with your camera – take pictures of all you see that delights you
59. Find and notice something beautiful every day
60. Do something badly.  Keep doing it.
61. Admire beautiful artwork
62. Do absolutely nothing
63. Do one brave thing everyday
64. Play
65. Treat yourself to something
66. Wear something that makes you feel beautiful or handsome and confident
67. Have an “All Day PJs Day”
68. Say I love you everyday
69. Jump in piles of leaves
70. Quit the job you hate that drains you
71. Say YES to what you truly love
72. Give yourself permission
73. Let go of belongings you no longer love or use (even family heirlooms)  Also applies to relationships
74. Hire someone to clean your house
75. Hire someone to mow your lawn
76. Let go of your story - aren't you tired of it?
77. Laugh
78. Be generous
79. Lay in the grass and watch the clouds
80. Take a long walk with your dog
81. Ride horse
82. Give up New Year’s Resolutions.  Pick a word instead
83. Stop drinking caffeine
84. Dance around your house
85. Forgive others
86. Forgive yourself
87. Make a list of the things you want to do in your lifetime
88. Do one of those things
89. And then do another
90. Eat healthy, whole foods
91. Eat something unhealthy AND enjoy it without self-criticism or guilt
92. Watch cartoons
93. Read the comics
94. Smile for no reason
95. Call the friends you’ve been meaning to call
96. Go complaint free
97. Schedule a day of no schedule
98. Go boat riding
99. Buy yourself a cheery balloon
100. What do you do for extreme self-care?
101. Seek therapy/psychiatric care
102. go outside in a rainstorm and splash through puddles
103. Walk through your local nursery.  I did and took a photo of the petunias at the top of this page (and then bought the basket and brought it home).
104. Eat a piece of dark chocolate
105. Give Up [this is not what you think so read my definition just below]

#105 - Give Up - is an important one for me.  Somewhere along the line through these many years I realized that to Give Up does not mean to quit; rather, it means to give it up to God so that S/He can relieve me of my worries and cares for awhile.  Another similar expression is "Turn it Over."  In the middle of the night when I wake up, I now envision God wrapping my loved one in a white soft blanket and holding her so I can get some sleep.  This image has helped me countless times to get the necessary sleep to carry on.

#101 - my own experience re seeking therapy/psychiatric help

To close, my mother who was part of my family member's (and my) Circle of Care loved to needlepoint.  She created this for me so I would remember that I do not have to "do it" alone:

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.