Severe and Enduring Eating Disorder (SEED) News, Developments and Commments

Updated 3 29 2018
As readers here know, a member of my family has been struggling with anorexia nervosa/bulimia nervosa combined with severe depression and anxiety since her teens.

A year ago she spent five weeks in a local medical hospital while her providers earnestly attempted to find a bed for her in a Level 1 (as it is called here in Arizona) psychiatric hospital as well as to a well-known eating disorder facility to no avail given the complex nature and longevity of her diagnosis.

During her stay, as a layperson although I have worked hard to be well informed (citizen advocate) on the subject, I met with push back and a certain level of patronization when I would inquire about lab results, her weight, and behaviors as well as offer suggestions.  As a result, I often sought, as her Court appointed legal guardian, to obtain the ongoing medical records in order to learn clinically what was going on.  Much of what I asked about I know is important information for those who practice in the field.

So, I was quite delighted to learn that the Journal of Eating Disorders has just provided Open Access to an article just published this year titled "Outcomes of an inpatient medical nutritional rehabilitation protocol in children and adolescents [up to age 23] with eating disorders".  Peebles et al. Journal of Eating Disorders (2017) 5:7 You can access the full article here:

In 2015, the Journal of Eating Disorders provided an important commentary on SE-AN titled "Severe and Enduring Anorexia Nervosa: in search of a new paradigm", an editorial comment written by Stephen Touyz and Phillipa Hay found here :  [Touyz and Hay (2015) 3:26]   My take-away from the article was that providers need to focus on a 'recovery model,' the goal of which is to "....draw upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong' with them."  The authors propose that "....Most patients with SE-AN are unlikely to fully recover.  Some do but they are in the minority.  It is therefore extremely important not to focus solely upon symptom reduction, but also to take into account a more holistic model of care....to take cognisance of the person as a whole by improving not only quality of life, but overall general functioning, employment and access to suitable housing as well."  I was hopeful, as I read their commentary, that additional research would be done and articles published to assist providers.  And so, apparently this is happening as the reader can find in the Peebles et al article above as well as the following that I've quickly put together here.

One may be of interest to therapists - Predictors of Therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa found here.  [Stiles-Shields et al. Journal of Eating Disorders (2016) 4:13]

Another is titled "Listening in the Dark:why we need stories of people living with severe and enduring anorexia nervosa" and can be found here.  [Conti et al. Journal of Eating Disorders 92016) 4:33]

I believe, as a family member, it's very important to hold on to hope.  I also am observing that a person with a severe and enduring eating disorder displays a tremendous amount of courage to keep going rather than to throw in the towel.  I think we as a society have a responsibility to stand by that person.

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.

"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

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.

Another Approach to Getting Beyond Bulimia - My Own

Having attended many family weeks, heard many theories about recovery from bulimia, read several books, and having seen how some people who desperately want to stop binging and purging struggle with the concepts of things like "fear foods" lists, I decided to share what worked for me.  The principle here is Less is More.  A key component is that after 15 years of being controlled by my disease, I'd had enough or to use language that I've read in several places, I was sick and tired of being sick and tired.

I want to interject here that I also recommend the reader to go to this link which is a review of the book by Kathryn Hansen titled Brain Over Binge.  She discusses the science of habits (among other things) and offers her own solution to overcoming bulimia.

First, having experienced the pull of binging and purging for about 17 years, in retrospect I now understand that I struggled with an addiction that was a coping mechanism connected with my illness, especially given the amount of reading and learning I've done regarding addiction.   I won't pretend to make any grand sweeping statements about my brain or what was going on or had happened in my life.  I certainly wasn't afraid of gaining weight and I knew darned well I looked awful when my weight was too low.   What I remember is that I took a form of comfort from the activity. 

Fast forward to my early thirties and I really became tired of the whole thing and I wanted to stop.  The wanting to stop got powerful enough to help me want to change.  I wish there were a "chip" or some solution that one could give to those with this disease to help them more rapidly reach that state of wanting to change.

Here's what worked for me:

I figured out somehow that the binge foods on my list had to go.  I knew that eating one of more of these was the perfect pathway for me to pathologically get into a binge.  Some time ago,  I was  watching a Sex and the City episode during which Miranda baked a cake and proceeded to eat almost the entire thing before dumping it into the garbage and pouring dishwashing soap all over it to prevent a retrieval.  That's a healthy reaction.  Many people with bulimia simply cannot stop; cannot make that decision easily; go on to eat more.

For me, one of my decisions was to avoid eating the cake in the first place...for quite awhile.

I also knew, because I had been a nursing student in college (I changed my major) and had taken a course on nutrition, I needed to eat healthily.  What healthily meant then is still pretty much what it means now although much more has been written about this and one can find  helpful information in, for example, James Greenblatt's book, Answers to Anorexia to address deficiencies that have built up over time. 

So, I put together an eating program that included the fewest choices of my "safe" foods that I also liked covering as much of what I needed nutritionally.  At some places where my daughter received treatment, the list remained rather long.  I found just the opposite to be of help.  My list remained short for quite a long time.  By long time, I don't mean a long time as in two or three months (the typical stay in a residential treatment center).  I mean for at least a year in most cases and on into two and three years - and more - for others.   There still remain a couple of things I avoid like the supersweet frosting on carrot cake.  Greenblatt talks about this, too.

In addition, I added supplements to my diet in the form of vitamins and minerals that are mentioned in Greenblatt's book.  I did this without much training other than my nutrition course and reading but it seemed to help.  My routine involved taking a multi-vitamin, a vitamin B-100 complex pill, vitamin E and vitamin C.  Later, on the advice of a doctor who also runs, I added omega-3 fatty acids in the form of capsules.  Following menopause many years ago, I added a few other things like B-12 (I have since learned through testing that my genetics make it difficult for me to absorb B-12), calcium and thanks to ongoing research and in spite of the fact that I live in the southwest, I added vitamin D because I go outside early and cover up from the rays of the sun plus slather on the sunscreen later. 

So, here was my daily diet for a long time:
Breakfast consisted of a small glass of orange juice/fruit, 2 eggs (usually scrambled), glass of  whole and later 2% milk, cup of coffee
Lunch consisted of fruit on top of a bowl of plain yoghurt and wheat germ sprinkled on top of that (thanks to Adele Davis - who some regarded as a quack but who was a guru to many at the time I was getting into recovery).
Snacks were fruit, particularly bananas or apples and a few crackers with cheese.
Dinner was salad, any kind of meat or fish, rice (no white potatoes for awhile) or sweet potatoes with butter, and lots of steamed veggies of many kinds with butter on top.
(Pretty much once a week for dinner I made a spaghetti sauce from an old family recipe - my grandmother introduced this - that included ground beef, canned tomato and mushroom soup, chopped onions and red peppers, and seasonings that include chili powder, paprika, salt, pepper and Tabasco sauce - still make this periodically today and my husband looks forward to it). 
Dessert was an apple or some form of fruit.
I would have a real coca-cola in the afternoon (I rarely drink it now because I hate the "new" coke with high fructose corn syrup as the sweetener and I refuse to drink anything with aspartame).
The amounts/portions were enough to at least help me maintain my weight which was still low at that time but not pathologically low anymore.

The absence of certain things tells the astute reader what my binge foods were.

Two years later I had also established a wonderful short early morning running program begun about the same time as my decision to quit b/p thanks to a neighbor down the street who also ran every morning.  Spending very scarce dollars on new red and white swoosh of Nike running shoes probably provided incentive, as well.  I know some people believe and/or have learned that excessive exercise is addictive, too.  I certainly felt good afterwards.  After sharing this feeling with a friend of mine who lived in New York City, he sent me a little paperback book - Thaddeus Kostrubala's The Joy of Running - and then began sending me his older copies of Runner's World.  Kostrubala's book helped me understand why I felt good after running.    For me, this decision to run was a life-saver because it became my barometer of how I was feeling and what I needed to do (eat and sleep) to keep enjoying my early morning run and to have a good day. 

[A side bar here, too, is that several years before I began my recovery from my ED, following the birth of my second child I developed a terrible case of painful arthritis in my knees and ankles - the after effects that limited me to avoid daily excessive exercise, which was a good thing.]

At this point  I learned that I could add carbohydrates like cereal or toast or even pancakes to my breakfast as long as they were paired with protein.  I believe, but didn't journal so I cannot say so for sure, I woke up hungrier and knew I needed to eat more so I could avoid getting a recurrence of the bronchitis I also used to get regularly when I was in my twenties i.e. I had learned, at least, that if my weight sank, I'd get sick.   Perhaps irrationally since I really didn't know, I believed that as long as I had at least one egg in the morning, I was safe adding these extra things.  I also increased my intake of milk by adding a glass for snacks.  And, cheese.  Now, being older, I have discovered Fairlife 2% milk.

Obviously, all of this was trial and error.  Also obviously this was a simple way to get back into healthy eating.  It worked for me.  I'm not saying it will work for everyone.  I frankly cannot imagine in the beginning having to choose each day from a very long list of foods or a table covered with different choices.  Maybe the acronym KISS fits here.

I also slowly began to gain weight.  Retrospectively, I understand now that my weight gain included  muscle gain.  Photos taken of me in my early thirties at the start of all of this show me to be quite slender; one could say too thin.  As my running activities increased to include adventures like my first marathon two years later and then running trails in the mountains around here after that, my body changed.  I remember thinking how good I felt and how healthy I began to feel.  I was filling out clothes in places I hadn't in the past.   And, I learned that if I wanted to keep running and stay injury free, I had to eat more calories.

I remember on the eve of my first marathon I attended a party and was offered a piece of chocolate cake.  I ate it.  I was shocked not only to savor every bit of it but also to realize that I didn't have the craving for a second, etc. piece.  A miracle.  That decision was my turning point that opened the door to me to start trying other foods that I had religiously avoided for fear of returning to my eating disorder.

By piecing together other posts on my blog, one can gather that over time I also realized I needed to address the effects of experiences I'd had earlier in life as well as ways of thinking that weren't doing me any good.  I began this process by attending an Affirmations class offered to employees where I worked.  That class opened me up to explore other avenues of therapy that continue, although not as intensively, to this day.  My blog attests to that.

As I said recently in another place on line, I wish I'd had training in dialectical behavioral therapy (DBT) when I was growing up.  I think it would have helped me cope with things that overwhelmed me and I think the theories would help anyone.  Mindfulness sure would have.    I'm pretty sure knowledge of these technique would have helped me communicate better with my loved one, too.  In fact, she taught me a simple grounding exercise that I find myself using unconsciously when I get stressed.    I was also given a book that I studied for weeks to implement some of these theories.

I remain in recovery and know that the tendency is still there, especially when I am very stressed.  I am very grateful.  [2/2017]

Courage, Hope and Support Groups

Occasionally I provide posts here written by Marjie Ruth who hosts a support group for parents of loved ones with ED in Tampa, Florida.  I've left that section of the post here in case anyone living in the area needs a support group.  I know when my loved one was diagnosed and for several years afterwards I did not know where to turn for support.  Tucson has a great support group now and I can put anyone who reads this who lives in this area in touch with the leader.


When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one.   My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."

I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.

I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state.  At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent.  I pray daily that the willingness will kick in.  My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!

Continuing to hope, I know, takes a lot of courage.  Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder.  As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........

Courage is what it takes to stand up and speak; 

courage is also what it takes to sit down and listen. 

~Winston Churchill

Dear Family & Friends of the Eating Disordered;

The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.

From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody. 

As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.

And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.

Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??

Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to  be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?

So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?

Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.

You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.

And what about you? Are you willing to examine your own hopes? Gosh, I hope so.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

Big Data and No Health Without Mental Health - Reflections on Dr. Insel's blog

Big data and the consequent availability of health information about people in Sweden illustrates what could happen in our country -- and is happening, actually, in some areas such as Multiple Sclerosis and Autism -- if more information was available in real time.

Dr. Thomas Insel, director of the National Institutes of Mental Health, blogs frequently on a variety of subjects.  We are fortunate that he takes the time to do so to summarize the advances that have been made.  We are also fortunate that President Obama drew world-wide attention to the recently revealed NIH initiative to revolutionize our understanding of the human brain.

Although his title focuses on Schizophrenia, Dr. Insel closes this essay with the observation, "These new numbers from Sweden should remind us that serious mental illness is a health disparity issue. One way to think about losing 13 – 15 years of life expectancy is to realize that people with serious mental illness have not benefitted fully from the gains in longevity over the past half century. We frequently say “no health without mental health” to stress the importance of treating mental illness as a pathway to better health outcomes in society. For those with schizophrenia, even in the most advanced health care system in the world, we are still facing early mortality from lack of diagnosis and treatment of medical illnesses."

If all goes according to plan, I shortly will be speaking succinctly on what the lack of parity and the presence of myths  did to interfere with appropriate care for my beloved family member who has been battling an eating disorder for more than 25 years.  Thanks to the work of the NIMH, the Academy for Eating Disorders, the Eating Disorders Coalition, and F.E.A.S.T. among others, advances are being made to get information into the hands of those who can make a difference so that someone diagnosed with an eating disorder can get the best possible treatment quickly.

A big hurdle is persuading everyone to stay current.  Membership in these three organizations alone combined with following advances noted by NIMH, which includes reading, comprehending and utilizing the information provided, would make a huge difference.

Important step: Asking for Help

[revised - thought of some points while hiking later today]

Earlier this week I received an email from Real Age titled "4 Tips to Break Bad Habits."  One of the tips is "enlist support -- ask for help."

I've learned over the years while listening at conferences and support groups, and reading literature that the concept of asking for help can be quite difficult for those with an eating disorder, particularly those with a perfectionistic bent and whose cultural norm is self-sufficiency, a norm heavily promoted by our society in my experience.  Think of all those self-help books one finds on bookshelves.

Our sons and daughters who enter treatment at a residential or out-patient facility or even independent treatment with (hopefully) a skilled eating disorder therapist, are often given what are called tools to combat their brain disorder.   The goal of those tools is to help them choose an alternative course of action rather than to turn to the behaviors that are endangering their lives or slowly killing them.

What is missing from the tool box, it seems to me, is the creation of a list of human resources -- people -- who will help the person in the moment thwart the desire to binge/purge or refrain from eating.

Many find they have a very hard time picking up that thousand pound telephone, even a cellphone can weigh that much when confronted with the need to call someone for help.  Yet these contacts are critical - a buddy system, if you will.   The buddy system is used in the Army when recruits are going through Basic Training. 

Although much research continues on eating disorders, many have pointed to clues that the behaviors involved in eating disorders become actual habits that are rewarded by the release of dopamine and other substances that either bring pleasure or relief or reduction of anxiety/fear (among other things).

The goal is to change that habit.

Before release from treatment in a residential facility or before leaving the day program for home or while working with a therapist in a 50-minute session, the person with an ED would be well-served with the creation by him/her working with the therapist of a people resources list that might even be laminated and carried with him/her at all times or entered into a cellphone database.

Many treatment facilities will forbid a visit to the rest room for an hour after meals.  That's great but who will become the monitor after the fact?  Instead, provide practice sessions where the person graduates to no monitoring but is encouraged to go find help if the urge sneaks up on them to purge.  In real life situations out on pass, for example, encourage the person to ask for help before the urge to grab a handful of aspartame packets at the coffee shop or give a sandwich to a friend during school rather than eat it for lunch takes over.  I'm sure there could be lots of other examples and I mention only a few to avoid triggers for those reading this.

There are Facebook pages and individual blogs out there used by people in recovery who reach out when they find themselves struggling -- another great way to ask for help.

Asking for help is part of the new behavior that must be developed for the person to survive.  Some might be able to turn to their own inner resources immediately (possibly because they're sick of being sick and tired), but most will need this extra step to make it all fit together, I think.  Perhaps the lack of this is one contributor to the relapse rate?

Encourage the creation of a multiple buddy system of people who will support the endeavor to get well rather than enable the person to continue with their behavior!

Just maybe we cannot do "it" alone.

[I write this piece with thanks to a therapeutic clinical treatment team that has developed this approach.  I think the approach makes a world of sense.]

The Buddha and the Borderline: A Memoir

Normally I would write a substantive essay before posting here; however, I want to highlight Kiera Van Gelder's book, The Buddha and the Borderline - A Memoir:  my recovery from borderline personality disorder through dialectical behavior therapy, buddhism, and online dating (New Harbinger Publications, Inc., Oakland, CA, 2010) now and write more about the book later after I figure out how I'm going to present it in terms of being a family member.

After perusing Kiera Van Gelder's work but setting it aside late last Spring to read and review Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D., earlier this week I picked it up again and read it word for word  because I wanted to get a first-hand up-to-date look at BPD from the perspective of a person who takes the reader on her journey with BPD (meaning she introduces the reader to BPD, to the effective (for her and why) therapies used, and how her life has played out - at least until 2010 when the book was published).

I learned so much from this book! and recognized my loved one's behaviors more times than I can convey here.  I highly recommend this book, too, as do many well-recognized to the field of BPD people among them (from the pages just inside the cover) Robert O. Friedel, MD, author of Borderline Personality Disorder Demystified; Perry Hoffman, Ph.D, president (2010) of the National Education Alliance for Borderline Personality Disorder; Blaise Aguirre, MD, medical director of the Adolescent Dialectical Behavior Therapy Residential Program at McLean Hospital in Belmont, MA.; Tami Green, internationally recognized speaker, life coach and advocate for those in recovery from mental illness, Roy Krawitz, author of Borderline Personality Disorder The Facts; Randi Kreger, author of Stop Walking on Eggshells and The Essential Family Guide to Borderline Personality Disorder -- this latter book by Randi Kreger helped me a lot!) and several more.

As Robert O. Friedel, MD, notes - "A must-read for people with this disorder, their families and loved ones, and mental health professionals."

I hope to illustrate why and how Kiera spoke to me through her writing.

More later.

Against Their Will - Another Essay re the Challenge of Treatment Refusal

The on-line edition (July 22, 2012) of Psychology Today carries an article by Emily Troscianko titled, "Anorexia and the Right to Die".

This discussion again evolves from the decision by Justice Peter Jackson previously discussed here on my blog.  


Emily's position is the same reached by several of us; that is, the brain of one with severe starvation syndrome resulting from anorexia leaves the mind incapable of rationally making the profound decision to end one's life.  It behooves scientists/doctors/researchers/caregivers to find a way to re-feed the individual and from there to assist that individual to reconnect with life and recovery.

The how is another question......

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

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

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

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

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

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

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

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

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

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

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

Parents - Building Our Own Toolboxes and Help for Our Loved Ones As Well (continued)

I've posted before on the topic of taking care of ourselves.

Today I found this link when I was exploring the F.E.A.S.T. page on Facebook.  

So many of us can get overwhelmed by being an advocate for our loved ones.  Yoga can be one of those tools in the toolbox labeled "taking care of ourselves". 

 Earlier this Spring I attended a weekend conference on brain disorders that included a session about Yoga and Depression.  I added it to my schedule and received a hands-on so to speak hour of self-care techniques.

The speaker of the session, Amy Weintraub,  teaches yoga for depression and, as well, has written a book by the same title. Here's her website: 

We all use different tools, I suspect, to help us gain the respite we need to carry on in the battle against the eating disorder, ranging from a cup of tea with a friend to a walk to a brief getaway. 

We can build resilience, too, by following simple techniques and making them habits such as getting enough sleep, eating well (meaning good nutrition), aerobic exercise (did you know that the hippocampus and amygdala in our brain have been found to shrink under stress while aerobic exercise provides oxygen and speeds nutrients to these areas to counteract this effect); broadening our perspectives re an issue so we stay away from "victimhood"; reaching out; and establishing a tried and true support system (identified and nurtured meaning to give while one asks to get).  

I just attended a workshop on resilience and came away with a lot of good information.  I just learned that the speakers - Dr. Callahan and Dr. Marks of the local VA Hospital in Tucson - have  incorporated this information and much more, including exercises and journal assignments, into an easy to use manual for those of us who need this skill - to be published shortly.  The research background that led to this workshop is fascinating, too!    The link I just provided calls for the development of what the author of the piece, Nancy Stek, calls "Stress Hardiness."  

The skills are being taught to returning veterans with PTSD and even to college students in a one-credit course at the University of Arizona - A ED 210, Resilience and Human Potential.   Certainly these skills can be modified to be taught to a wide range of audiences - from children in tough home situations to students entering college to those signing up to serve in our military to parents of loved ones who are seriously ill to those beginning the path to recovery from an eating disorder.

Adding a P.S. here on June 3.  The New York Times Sunday Review, section (p. 6) includes a two-page spread titled "My Brilliant Career."  Olympia J. Snowe (Senator from Maine, a moderate Republican and a hero in my book for some time) mentions one of the key points I heard at the workshop:  "....it reminded me once again that it is possible to distill triumph from adversity.  Because it's not a question of whether you will encounter difficulties in life; it's really a question of how you confront them."

We build our own tool boxes, don't we.  So necessary!