Part 2 - UCSD 3rd Annual Eating Disorders Conference - Integrated Treatment of Substance Abuse and Eating Disorders 2016

[Part 1 of this 2-part series provided an overview and introduction.  My original goal in Part 2 was to cover highlights of the presentations.   However, Dr. Baker-Dennis gave me permission to include all the material she presented. I have italicized direct quotes from slides or items from my voluminous notes that may have been direct quotes.  I am selecting from a lot of information and hope that my account will be acceptable to the presenters as well as the conference organizers.  I've needed to set this aside for awhile as my loved one is again hospitalized and her team is working on a solution for next steps. (4/11).

I purposefully arrived Wednesday evening in order to attend Dr. Marc Schuckit's Thursday morning Substance Abuse 101 - a preconference "booster" designed for those of the eating disorder community.  Concurrently, Jessie Menzel, PhD, presented Eating Disorders 101.   The UCSD website provides a link to its three-video series on Eating Disorders 101.  You can access it by clicking here.  By the close of Dr. Schuckit's discussion two hours later, I felt I had a better handle on the topic and could therefore better understand the need for integrated treatment. I also had a better understanding of what my loved one was up against in terms of possibility of recovery.

After outlining what the lecture would cover:  drug groups and problems; substance use disorders (criteria, course, causes); and then Treatment (identification/intervention, detoxification [if available], and rehabilitation), Dr. Schuckit provided us with an overview of the four main classes of substances most often used - depressants, stimulants, opioids, and cannabinols.  He briefly touched on hallucinogens, PCP, solvents and others.  He addressed the substances' effects on neurotransmitters; the outward symptoms such as psychosis, depression, and anxiety; and the subjects of overdose and withdrawal.  As with eating disorders, genes and the environment are significant factors -  genetics 60% and environment 40%. He identified Motivational Interviewing as one key to helping the person get into recovery (a terrific segue to the afternoon talk on MI by Ken Resnicow) as well as Cognitive Behavioral Therapy, Dialectical Behavioral Therapy, self-help groups and some medications (not all have detox agents at this time).

Following lunch, the formal conference got underway with Stopping Whack-a-Mole: The Need for Integrated Treatment of Substance Abuse and Eating Disorders presented by Amy Baker-Dennis, PhD, FAED.   Her most recent book is Eating Disorders, Addictions and Substance Use Disorders: Research, Clinical and Treatment Perspectives, published in 2014, and more information can be found here.  In retrospect, I am realizing that Dr. Dennis's presentation was significant to the entire conference because it was so detailed and so comprehensive with elements that were addressed by each speaker in subsequent presentations.  Her argument is quite persuasive and very important.  I hope she is invited to give this presentation to many other conferences and groups.

Dr. Amy Baker Dennis kindly said she would welcome the publication here of the materials   that she presented during the conference. I have italicized direct quotes.  I am very grateful and I expect readers here will be, as well.  Integrated as well as individualized care is extremely important for those dealing with co-morbidities and substance abuse.  

Dr. Dennis brought the two morning topics together by first providing us with a sobering number of statistics about the occurrence of both disorders and the disruption in people's lives brought about by these two disorders.  

She described the shared characteristics:

• life threatening disorders
• increased risk for suicide
• long term illnesses
• resistant to treatment
• frequent relapses
• The 3 C's - compulsive craving, loss of control, continued use despite negative consequences
• cognitive impairment
• negative impact on all organ systems in the body
• heritability
• loss of self-esteem
• high incidence of Borderline Personality Disorder
• high rates of mood/anxiety disorders
• developmental transitions (puberty, leaving home, marriage, parenthood)
• trauma - child sexual or physical abuse, neglect incest, rape, witnessing violence
• loss/separation
• denial, secrecy and shame
• interferes with interpersonal relationships
• use of substance for mood altering effects

With similar adaptive functions of

• to escape, avoid, and/or numb
• to manage other co-morbid disorders (mood, anxiety, PTSD)
• to punish the negative self

The differences, again examples from her list, include 

• tolerance, physical dependence and withdrawal are not applicable to ED
• lack of human research evidence on "toxis" or "allergic" trigger food substances
• 3 C's of ED are the result of dieting and starvation, not food
• mental illness versus medical disease
• chronic vs curable conceptualization
• conflicting research on genetic and familial etiology
• difference drugs abused

The different treatment focus would be

• increase restraint vs moderating over-control
• abstinence versus normalization of eating behaviors
• attitudes toward psychotherapy, medication and self-help

or re the last point, my remark that FOOD IS LIFE.  [I have hiked in the Grand Canyon many times.  One of the signs posted is "water is life."  So is food.]

Many of us parents have found few if any integrated treatment facilities.  Most provide sequential - meaning focus on the most acute disorder first and then move on to another provider to address the other, or parallel treatment during which treatment occurs at the same time but not at the same location and not provided by the same facility.  My loved one has experienced the latter several times without success.  I have also observed that the focus has shifted back and forth over the years from one disorder being "primary" to the other.

Dr. Dennis surveyed 351 publicly funded substance abuse facilities to learn if they provide eating disorder treatment.  [italics indicate direct quotes from her talk.]  Half of them screened for eating disorders upon intake, 29% admitted with ED, and 48 percent admitted eating disorder patients with low severity.  However, and as I have found here locally, in programs that did admit eating disorder patients, the primary treatment was the medical psychiatric model of addiction as opposed to standard EBT for eating disorders.

She obtained data on the availability of eating disorder treatment in privately funded SUD programs, as well.

• 345 privately funded addiction treatment programs
• 74% screened for ED
• 67% admitted cases of low severity
• only 21% attempted to actually treat the ED
• 5% identified having some ED protocol (i.e. meal-planning supervised meals, bathroom monitoring, weighing and self-monitoring)
• 3% provided dietary and/or nutritional services
• 2% incorporated medical monitoring of the ED

[As a parent, I am dismayed by an apparent continuing entrenched attitude that eating disorders can be treated like an addiction.  The information provided at the conference was a breath of fresh air!!!]

Dr. Dennis also surveyed 20 nationally known, long-standing ED inpatient, residential and PHP/IOP treatment programs in the United States to learn of the availability of substance abuse treatment..  She learned that 55% (11 programs) provided integrated screening assessment and treatment of ED and SUD onsite, 4 programs provided sequential treatment onsite,  1 program provided sequential treatment off-site, and 4 programs provided parallel treatment.  Of the integrated programs, only 3 employed SUD/Addiction specialists on their staff.

Incidentally, in an article that appeared in the Science Section of the New York Times on Wednesday, March 15, there are now 75 privately funded eating disorder programs. However, there was no mention of substance abuse programs within the article.

Her first takeaway message to those attending is most publicly and privately funded substance abuse treatment facilities neither treat nor provide multidisciplinary evidence based treatment for patients with eating disorders, the availability of fully integrated treatment for ED patients with SUD is lacking in ED inpatient, residential and PHP/IOP programs, and many ED programs do not admit patients with active SUD.

I was primed to move on to Dr. Dennis's definition of integrated treatment, which includes: comprehensive and integrated screening, individualized comprehensive treatment plans, individual therapist and treatment team are highly trained in evidence based treatments for both disorders, services provided at the same locations by same providers in a step-wise, integrated fashion and plan for patient movement through different levels of care.

We learned why we need integrated treatment (with examples listed for each subtopic) - high rates of comorbidity, high mortality rates, complex symptom constellation, lack of services leave patients vacillating between ED and SUD.

So, knowing that my loved one has been diagnosed with a long-standing constellation of symptoms, I knew the reasons there needed to be integrated treatment but I learned the basis behind what I thought were the reasons. Very sobering, indeed.  In fact, I distinctly had the urge to go home at the end of the first day because I found it difficult to come face to face, again, with the reality that hope might not be in the picture for my loved one.  However, by the end of the second day, I was glad to have stayed because, again, my purpose in going was not only for my loved one but also for the readers of my blog who have an adult in their family with an ED (close now to 29,000 hits and counting).  And, I walked away with renewed hope.  

So, under high rates of comorbidity, approximately 50% of ED patients abuse substances, which is 5 times the rate seen in the general population.

• alcohol
• illicit drugs
• prescription medications
• over-the-counter medications
• internet supplements

Under high mortality rates, 

• meta-analysis of 249 reports of mortality in individuals with mental illness found that individuals with AN and BN had rates of suicide that were higher than any other psychiatric disorder and 23 times higher than seen in the general population
• individuals with AN/BP have the highest risk of death of all ED patients
• women with AUD are 20 times more likely to commit suicide than the general population
• individuals with AN are 19 times more likely than the general population to have died from an SUD, primarily AUD.

Under complex symptom constellation, besides individuation of treatment plan for a person with  ED and/or SUD or both

• a majority of these co-morbid patients are bulimic or binge eat
• often have many psychiatric co-morbidities including MDD, anxiety disorders, PTSD, personality disorders (Multi-impulsive symptoms)
• history of interpersonal trauma
• poorer social, interpersonal and occupational functioning
• may respond differently to interventions typically delivered in SUD programs and will need comprehensive, integrated ED/SUD services.

And, finally, under lack of services leave patients vacillating between ED and SUD, the title whack-a-mole is a very descriptive example as is symptom substitution, programs that do not admit dually diagnosed patients may see the emergence of other disorders with remission in the disorder they treat, lack of available integrated treatment is a problem for primary care physicians, and ED and SUD specialists from multiple disciplines that need to provide appropriate referrals and, of course, families and sufferers are often confused about where to go for integrated services. 

So, why isn't integrated treatment common now?  What are the barriers?  I list below all those barriers provided:

Lack of evidence based treatment for ED/SUD
Lack of cross-training
Differences in treatment philosophy
Different staffing patters
Gaps between research and practice
Lack of accessibility to treatment
Lack of formal connections between ED and SUD communities

This list speaks volumes - one of those a picture (the slide) is worth a 1000 words.

Dr. Baker Dennis moved on to the Guidelines and Principles for Effective Integrated Treatment, reiterating several of the points earlier in the lecture.

Guidelines for Integrated Program Development include:

1.  Eating Disorders and substance use disorders are treated concurrently
2.  Treatment team needs to be fully trained in evidence based practices for both ED and SUD
3.  Formal and informal cross training between disciplines and clinical specialties is essential
4.  Motivational interventions are used to assist patients at all stages of treatment
5.  Cognitive Behavioral therapy is the cornerstone of treatment for ED and SUD during active treatment and relapse prevention
6.  Multiple modalities for services are available including individual, group, family, nutritional and self-help

Principles for Effective Integrated Treatment

1.  ED and SUD are complex but treatable conditions that affect brain functioning and behavior
2.  No single treatment is appropriate for all individuals
3.  Treatment needs to be readily available
4.  Effective treatment attends to multiple needs of the individual not just the ED and the SUD
5.  Understanding the "adaptive function" of the ED and SUD can inform case formulation
6.  Remaining in treatment for an adequate period of time is critical for treatment effectiveness
7.  Counseling (individual, family, group and nutritional) and other behavioral therapies are critical components of effective treatment
8.  Medications are an important element of treatment
9.  The treatment plan must be continually assessed and modified to meet the person's changing needs
10. Medical detoxification is only the first stage of addiction treatment and by itself, does little to change long-term drug use
11. Weight restoration, the normalization of eating patters and the elimination of compensatory behaviors is only the first stage of recovery from an ED
12. Treatment does not need to be voluntary to be effective
13. ED related behaviors and drug use during treatment must be continuaously monitored
14. Patients should be tested for the presence of HIV/AIDS, hepatitis B and C, tuberculosis and other infectious disease and targeted risk reduction counseling should be provided

In closing, Dr. Dennis provide the benefits of integrated treatment

• Improves treatment delivery
• Improved continuity of care
• Reduces time in treatment
• Lowers overall treatment costs
• Improves treatment outcome
• Lessens professional treatment referral confusion
• Lessens consumer confusion

While listening to this presentation, I also reflected on the value of dialectical behavioral therapy in addition to Cognitive Behavioral Therapy (point 5 of Guidelines) for DBT has been shown to be especially effective for many who have anorexia/bulimia combined with the diagnosis of Borderline Personality Disorder.  The presentation by Dr. Seth Axelrod, PhD of Yale University School of Medicine, Yale-New Haven Psychiatric Hospital goes into great depth on the use of DBT for both ED and SUD.  I will be addressing this in the next part.

Under point 5 of Principles, the example given of adaptive function would be the discovery by the patient that a certain behavior, once it is an entrenched pattern e.g. bulimia or not eating, is sufficiently disruptive to the existing family dynamics to encourage partnership between two parents who might otherwise seek a divorce.

Under point 6, in several places on my blog and and during presentations to Congressional Legislators and/or their key staff during the Mom's March in Washington, DC this past fall, I reiterated the comment that treatment must be for as long as needed.  Too often insurance companies revisit the case every ten days or if the person is lucky 30 days but neither is sufficient for the rewiring of the pathways of each individual's brain.  For eating disorders, the minimum in my opinion is 6 months with follow-up therapy possibly lasting years.

Under point 12, here in Arizona because all private treatment facilities require that the patient is willing (and who among us with children, adult or not, have been faced with resistance to the extreme at least for the first 2-3 months of treatment whether at home or in a treatment program - the term "non-compliant" sends my blood pressure soaring), the choices where one can find involuntary treatment are three:  the Arizona State Hospital, jail, or prison.  An exception might be if a judge specifically orders treatment with the consequence of not attending, again - jail.

So, wrapping up Dr. Dennis's presentation, I encourage parents and loved ones of someone fighting both an eating disorder and substance abuse to investigate whether or not the facility to which they might send their loved one follows the Guidelines and Principles listed above.  And, may those who attended the conference carry back with them these principles and guidelines to put in practice at facilities that could then better serve the people who come to those facilities for help.

UC San Diego 3rd Annual Eating Disorders Conference: Integrated Treatment of Substance Abuse and Eating Disorders February 25-26, 2016, Part 1 Introduction

(I will post additional remarks/summaries about the content of the conference in Part 2 which will take me more time to put together.  As I review my notes and the materials presented and discuss some of the issues with a local therapist and psychiatrist,  I am gaining additional insights and understanding.)

I decided to attend this amazing conference for two reasons:  to learn more about the subject of the title of this post and to learn if there might be any possibility of effective treatment for my loved one whose life has been chaotic for more than 27 years years due to multiple co-morbidities plus severe and enduring anorexia nervosa/bulimia subtype and the search to find something to address the chaos.

My questions to the reader are, "What would you do to help reduce absolute chaos in your loved one's life if nothing was working?"  And, if your loved one with an ED and co-morbidities such as bipolar disorder, depression, borderline personality disorder and/or anxiety disorder (or all of these) could not find a solution to his/her chaotic life, what might s/he do about it?  Did you know that up to 50 percent choose substance abuse as a solution?  How do we address and design treatment for someone struggling with these issues?

Here's the program for the two days:

I attended (I've abbreviated a few of the titles) Substance Abuse 101; Stopping Whack-a-Mole; Motivational Interviewing; From Science to Practice; the Psychopharmacology of Emotion Dysregulation in Eating-Disordered Patients with Co-Occurring Disorders; Dialectical Behavioral Therapy (DBT) for Integrated Treatment of Substance Abuse and Eating Disorders; Partners and Parents; and the Developing Brain:  Insights from Neuroimaging.

From the point of view of a parent who has pretty much read and digested everything I could get my hands on or listen to re eating disorders, co-morbidities and substance abuse for the past 27 years including Laura Collins' book, Eating with Your Anorexic, which was a revelation to me,  I could not have asked for a more comprehensive and informative curriculum that would address my loved one's needs and provide me with additional knowledge to pursue effective care.  I applaud the conference organizers and sincerely thank, as well,  Gina Bongiorno, MFT, and Erin Parks PhD for the extra time they provided to me to answer many questions.  I continue to consider Dr. Walter Kaye one of my heroes.  I thank very much Jennifer "J.D." Ouellette for her support, company and reassurance during the time I was there.

[The backdrop was the Hilton La Jolla Torrey Pines Resort located south of and a few minutes walk from the Torrey Pines State Reserve where there are several hiking trails, a few offering splendid views of the surf and the Pacific Ocean.  Those of us lodging there were offered a very reasonable rate.  I arrived Wednesday evening and left early Saturday morning, enjoying two delicious dinners and breakfasts apart from the meals provided during the conference.  Their Starbucks on site provided me with my hot soy chai thanks to two coupons offered to me upon my arrival as well as two appetizer coupons for dinner.  Indulge me while I provide a few photos including one of the trail map.  Then it's back to the conference!]

Here's a view from my room, four from a trail within the Torrey Pines State Reserve, and a photo of the map provided to me by the concierge who made sure to tell me that I needed to be out of the park by sunset when it closes:

So.......

Dr. Kaye outlined the goal of the conference in his welcome letter to us:

"Our goal for this year's [the third] conference was to bring together eating disorder clinicians and substance use clinicians so that we can learn together, and from each other, how to help those struggling with co-occurring disorders.  One third of people struggling with substances abuse report eating pathology, and up to half of all adults diagnosed with eating disorders meet criteria for substance abuse.  [emphasis mine.] Cross-training and collaboration across these two specialty areas will help us to better serve these individuals - thank you for being here to help serve this goal."

I was one of the few parents but I did not feel out of place I think mostly because none of the language used or the methods discussed was unfamiliar to me.  I certainly gained a much better understanding of Motivational Interviewing thanks to Ken Resnicow, PhD, and of Dialectical Behavioral Therapy thanks to Seth Axelrod, PhD.  In fact, if I had been restricted to just a few of the offerings, I would have selected those two plus the Psychopharmacology of Emotion Dysregulation in Eating Disodered Patients with Co-Occurring Disorders presented by Terry Schwartz, MD and Mary Ellen Trunko, MD and that by Amy Baker-Dennis (see next paragraph).  Fortunately, however, all sessions were open to me and all were highly informative.

Prior to her presentation, I spoke briefly with Amy Baker-Dennis, PhD, FAED, who provided those attending the 2010 NEDA Conference in New York City  a similar but much earlier version of her presentation about The Need for Integrated Treatment of Substance Abuse and Eating Disorders.  So much more information this time gained from her years of additional experience and practice!

Because some readers here may know more about substance abuse than eating disorders and since I did not attend Eating Disorders 101, here's a link to three videos found on the UCSD Medical School Center for Eating Disorder website titled, Eating Disorders 101.  (As I post this, I am wondering out loud if the 2016 conference was videotaped and might be available for a modest price?  I will find out.)  I will repost this paragraph in the next post, as well.

Book Impression: Loving Someone with Borderline Personality Disorder: How to Keep Out-of-Control Emotions from Destroying Your Relationship

Although Loving Someone with Borderline Personality Disorder was published in 2011, I have only recently learned about its existence.   I am very grateful to the therapist who is trained and certified in DBT and who recommended the book to me.  Each time I review sections, I find more insights and will probably update this post as I do.


The author is Shari Y. Manning, PhD, who has been focusing on the treatment of people diagnosed with BPD since 1993.  The book is available in paperback [Guilford Press, 2011] and includes a foreword by Marsha M. Linehan, PhD, who created Dialectical Behavioral Therapy (DBT) and who revealed in the New York Times in June 2011 that she fought BPD, too.  I felt compelled to read the book with the goal of improving my understanding of this diagnosis as well as relating more effectively to a person with the diagnosis.

As with other posts, I've highlighted some of the things I gained from reading the book.  This isn't a true book review. 

Synopsis:  Shari Manning provides us - parents, family members, partners, and therapists - with the tools to help us stay grounded as well as coach our loved ones away from distressing thoughts and harmful behaviors towards living a more productive and serene life.
 
The book's underlying premise - one that I had not heard before and that provides a very different view of what's going on - is found on p.3 of the introduction, and that is,

 "....The truth as you'll learn in this book, is that your loved one is not a terrible person, as much as he or she may have a pattern of some pretty terrible behavior. It's not that your partner or family member wants to create chaos or make anyone miserable. It's that your loved one can't do the right thing, get along with others, or make the choices that seem so plainly correct to everyone else - because he or she doesn't know how. That may seem awfully hard to grasp. Doesn't everyone just have a feel for what it takes to keep a job or a friend, how much is too much to ask of those who care about us, and how to exercise a little self-control! Wasn't your loved one born with the same instincts and the same opportunities to learn how to navigate the world as the rest of us? As difficult as it is to believe, the answer is no. People with BPD were born with an invisible, innate difference that profoundly changed the landscape for them when they were growing up......." 
 
The author cites research that sounds very familiar to those of us who have believed all along that something "else" is going on for those of our loved ones who develop an eating disorder, the reason I began this blog.   Even if the BPD diagnosis is still unclear, the techniques Manning shares are useful and echo in many ways those provided by Dr. Xavier Amador who I have quoted many times from his book, I am Not Sick, I Don't Need Help and from his theory of communication - LEAP - that is summarized here.

 Manning explains the disorder, introduces the reader to dialectical behavioral therapy, provides extensive examples of how to respond - not react!! - to our loved ones through validation, describes the varying behaviors of people diagnosed with BPD, and (as does Amador's) offers important information on how to deal with crises as well as get help (both for us and for our loved one).  I will touch on these topics below.

As readers of my blog know, I don't like the DSM's terminology Borderline Personality Disorder.   Francis Mark Mondimore, MD, and Patrick Kelly, MD, helped me understand and articulate why not on pages 229-231 of their book, Borderline Personality Disorder:  New Reasons for Hope. The terminology can cause one to think the condition is permanent and this isn't necessarily true.  The terminology also can undermine the person's view of himself/herself.  Two strikes before treatment has even begun!!  For some time I've been calling BPD emotional dysregulation disorder because the person with the diagnosis cannot regulate their emotions and the behaviors that evolve from those emotions.  I also want to move away from this terminology because it conjures up what was thought to be an uncurable condition to the point that many therapists won't accept people with this diagnosis as patients.   Better yet, there are more therapists classically trained in this technique (in my opinion critical if someone with this disorder is to be treated well).   I am grateful that this situation has changed.

Recently, I read and provided my impression of Borderline Personality Disorder:  New Reasons for Hope by Francis Mark Mondimore, MD, and Patrick Kelly, MD.  I want to repeat their distillation (as they term it) (p. 251) of this complicated disorder because this paragraph summarizes background that Manning also provides in great detail:

"Borderline personality disorder develops when a child born with extremes of temperament and a biologically rooted difficulty managing emotions encounters a mismatched childhood environment. This mismatch may be quite subtle or quite pathological but is experienced by the child as inconsistent and unpredictable, leading her to develop a damaged sense of self and the expectation that others will continue to be inconsistent, unpredictable, and ultimately unreliable and abandoning. This in turn causes profound emptiness and hopelessness to dominate her emotional life. To cope with her emotional extremes, and her desperate and painful unhappiness, she develops self-destructive coping behaviors like addictions, eating disorders, and self-mutilation. Frequently, these individuals also suffer from biologically based mental illnesses that exacerbate all their other problems and prevent behavioral and psychological treatments from helping them.
....Borderline personality disorder results from an interaction of genetic and other biological factors, inborn temperament, and childhood experiences and is usually complicated by the development of abnormal behaviors and psychiatric illnesses. All these factors require therapeutic attention, often by different professionals using different approaches."

To help other therapists effectively understand and address what Mondimore and Kelly describe above, Dr. Linehan created a five-part  reclassification/subdivision of dysregulation:

• emotional dysregulation
• interpersonal chaos
• behavioral dysregulation
• loss of sense of self
• cognitive dysregulation

 Most of these are self-explanatory and Manning provides excellent and clear examples; however, the one that I struggled to understand was the loss of sense of self.  Manning defines this by saying (p. 22-23)

"....People with BPD often don't have a sense of what they like, what their values are, or who they are....In the moment, they are unable to identify what their experience is -- what they feel in their bodies, what their thoughts and emotions are.  They often judge themselves very harshly and struggle to develop realistic goals for the future.....Not knowing who you are is a byproduct of the extreme emotionality of people with BPD.... They feel lost and empty."

Very simple - perhaps too simple because the issue is much more complicated - examples of how this sense of self can be lost [when compounded] are hearing, as a child, a person tell them that of course they aren't scared (when they are scared to death in that situation); that brussel sprouts taste good (I sure didn't think so as a kid); to quit crying (as though emotions can be turned on and off on a dime); to stop telling lies (the information is not a lie but because the behaviors they are reporting are unbelievable - such as abuse from another family member - the family member squelches the child's need for support), etc., etc.   Manning provides a much more comprehensive discussion of the development of this aspect of the disorder. 

It's important to remember here that the term used by Mondimore and Kelly - mismatched environment - is a very important piece of the puzzle.  Who really knows how this happens in some and not others or why?  And, as time goes on, we may learn that the emphasis falls more distinctly on inherited traits and less on environment.  The fact remains, though, that studied interaction is very important.   

I've discussed in another post about communication (with links to previous posts) why family therapy really helps parents in particular understand that each of their children is unique.  These are my remarks and not those specifically found in Manning's book but the reader certainly finds similar examples. If, for example, your family isn't as demonstratively affectionate (or less so) as your individual child may need it to be because of his/her own temperament, those who take the time to connect with their child(ren) may find unexpected rewards.   Of if your family's culture is to keep a stiff upper lip in times of terrible sadness such as when a family member or even a beloved pet dies, yet the son's or daughter's sensitivity to such events is profound, how do they reconcile - or can they - their feelings with their family's seeming insensitivity.  One might ask, what's wrong with me or think, I do not belong in this family.

The bottom line, once this disorder takes hold,  is that people struggle with varying states of this dysregulation every single day.

Their solutions to deal with the fall-out of this disorder range from cutting to impulse buying or even shoplifting to alcohol and/or drug abuse to running away to shattering a beloved relationship to suicide attempts.  These behaviors can help the person release the pain they are feeling but the release, even though it may feel "good" in the moment, provides negative reinforcement, meaning that it is rewarding in a negative way.

What we all want to happen instead is for the person with this diagnosis to learn to substitute other positive behavior so they can get on with a happy, productive life.  

Marsha Linehan came up with the "how". She developed dialectical behavioral therapy (DBT) to (p. 27)

"....provide an alternative in the form of specific skills that help them maintain good relationships, tolerate distress and survive crises, and learn to use their emotions as the important resource they were designed to be [emphasis mine.]"

Emotions are part of what makes us human.  Manning distinguishes three emotional tendencies of those with emotional dysregulation:

• extreme emotional sensitivity
• emotional reactivity (no pausing; just acting) 
• slow return to baseline - perseveration

Imagine the physical and psychological energy this must consume! 

So, you might ask, where do I come in?  What can I do without trying to take on the role of a therapist for which I am not qualified?  How can I avoid fragilizing my loved one [Manning's term and a descriptive word!].   As family members, we want to encourage and praise our loved one's growing competence as they employ the principles of DBT.   Believe and remember that this competence can develop.  And we also need to understand, according to Manning, where our loved one is in the process so we can provide appropriate support as needed.  She provides tools to help us accomplish this, too.

Your task is to (p. 48)

 "Understand the tasks of emotional regulation that your loved one [and you!] needs to be able to perform."

Think about the above statement for a moment.  How helpful can you be if you, too, are emotionally reacting to whatever it is your loved one has said or done.

How do you help your loved one [and you] (p. 48):

• reorient attention
• Up-regulate or down-regulate our physiological arousal
• Stop ourselves from doing whatever it is our emotion and mood tell us to do
• Have a life with goals in it that are independent of emotion

 To cope with the ups and downs of living, everyone needs to put these four points into action.   Throwing temper tantrums as a two-year-old or losing one's temper as an adult are not effective ways (well, maybe they can be but at what cost in the long run if the person perpetuates this behavior) to get what one wants. 

As the person who wants to maintain a relationship with your loved one, you can take the steps provided in this book that are the basis for an extensive discussion, especially about validation,  and Manning provides exercises and examples to help you do this.  To elaborate on the concept of validation, Manning incorporates Linehan's six levels of validation and I've provided a link to an article about the levels that also appeared in Psychology Today.  As I've said, I encountered some of these in Amador's book.  I also learned aspects of this in a mediation course.  Dispute resolution includes some of this as well.

Here are the suggested steps for you to take to help your loved one:

(p. 51)

1. Assess: ask [objectively] what has happened.
2. Listen actively; don't contradict, judge, or say your loved one is overreacting.
3. Validate: find something in what happened that makes sense and is understandable, that you can related to; say what that is.
4. Ask if you can help, not to solve the problem, but to get through the moment.
5. If your loved ones says no, give him or her space and remember the emotions of emotionally vulnerable people last longer.

 Having gotten through the first three of these steps [the first three because I had not been coached in steps 4 and 5], I had asked (so as to put the responsibility onto the person needing to solve the problem),  "what are you going to do about it?"

Thanks to Manning, I've come to understand - going back to the five areas of dysregulation - that those with BPD may not know what to do about it.  This can be shocking.  Accept that just maybe your loved one needs a complete retraining or even an introduction to problem-solving skills in a variety of settings  that are applied to many aspects of life to make a successful go of it.  If you wonder about the veracity of this possibility, you can arrange for neuropsychological testing that will identify deficits that need attention.

So, what are effective problem-solving steps?  Manning reviews seven suggested steps and also enhances the discussion on Active-Passivity (getting someone else to solve the problem).  (p. 138):

1. Define the problem: What are you trying to solve here?  What are your goals?
2. Analyze the problem: What are the facts about the problem and/or the problem situation?
3. Generate solutions: Purely brainstorm.  Don't exclude any ideas because they are ridiculous or unrealistic.
4. Choose a solution: Narrow down the solutions to the one you think will best get you to your goal, will solve the problem, and is the most realistic to implement.  [Even this can be quite a bit of work for your loved one.]
5. Troubleshoot the solution: What could get in the way of achieving the goal?  How will you overcome these obstacles?
6. Put the solution into action:  Try the solution.
7. Evaluate the solution:  Did it work?  If not, choose another solution from the "generate solutions" list and implement it.

In addition to problem solving and Active-Passivity, the second section of the book addresses other faces -- the experiences -- of BPD; for example, self-invalidation, conflicting feelings, shame,  and apparent confidence.

There's a wrinkle that Manning defines as she examines the concept of apparent confidence.  The easiest and simplest way to describe this is to think of a dog learning to sit.  In your home or with you in your backyard, your pet doesn't have many distractions and after some practice (with treats), sits when asked.  So, off you go to the pet store with your companion on a leash only to find that your pet doesn't listen to your sit command -- doesn't seem to listen at all --  when other dogs and people are present in what to your pet is a new -- and often noisy -- environment.

The same disruption can occur for those with BPD.  In a one-on-one conversation or exercises, what comes next having taken these steps appears to be simple and easy for the person to tackle.  But add many more people, some of whom might be viewed as being judgmental, noise, the stress of believing that the "right" decision needs to be arrived at, and so forth and suddenly everything seems impossible. 

Manning writes, (p. 150)

People with BPD seem to have more trouble generalizing behaviors than others largely because, as with so many of their other problems, emotions interfere with learning....If your loved one seems unable to do something in one context that she can do in another, it's not that she isn't trying hard enough, it's that the behaviors literally are not in her repertoire of behaviors for that specific environment.

As you might imagine, shame figures hugely in all of this, too.  Going along day after day under these circumstances is incredibly difficult.

Once you are aware of and have accepted all this information, the next step is to take action or depending on your relationship or energy level,  to find a trained/certified life skills coach.

Absorbing and putting into practice the information that Manning includes in her book takes time, hard work, practice and thoughtful communication on the reader's part.  I'm participating in some training sessions, too.

Manning provides the reader with lists, examples and exercises to help you respond effectively.  In fact, she suggests that you xerox pages and have them handy.  One table is on p. 72 and lists the Five Steps to Responding Effectively to Borderline Behavior:

1. Regulate your own emotion.
2. Validate [yourself] (do this at every step).
3. Ask/assess.
4. Brainstorm/troubleshoot.
5. Get information on your role (if any) and what you can plan on hearing about the outcome.

Taking care of oneself is important, too.  Manning provides suggestions in another short but effective table about identifying and communicating limits.  Boundaries often is another term people use to describe limits.  All these points need practice.

Hopefully, your loved one is also working at least one hour or even two hours a week with a competent certified DBT therapist.   Expect this therapy to last at least six months, possibly a year, and to eventually include group work with others who are motivated to change.   What I mean by competent is someone who has taken the training and applies the training completely rather than inserting aspects of it into another form of therapy and who recertifies often, possibly once a year.  Your role is to support the work that your loved one is doing as he/she applies his/her learning to the real world.  Again, your role is NOT to be the therapist.

If your loved one also has an eating disorder, find a therapist who is willing to work with the DBT therapist to enhance the value of ongoing treatment.  Addition here:  remember, that some with BPD will deliberately create the idea of good therapist/bad therapist and interfere with his/her own recovery as a result.  This manipulation often is subconscious so if another therapist is added to the equation, s/he and the BPD therapist MUST work together and inform their patient that they are working together.  In addition, ask the DBT therapist if s/he seeks regular guidance from another DBT therapist in order to stay grounded and not drawn into the whirlwind that someone with BPD can create.

Part III of the book focuses on the practicalities of dealing with crises and getting help. Here Manning thoughtfully helps the reader reflect on his/her feelings, experiences and actions -- fear, guilt, despair -- leading up to this point.  She provides an in-depth section on your loved one's potential for self-harm as well as suicide and in addition examines the pros and cons of inpatient versus outpatient treatment.  Finally she provides the names of other resources including organizations developed to provide help to families and those diagnosed with BPD.

In summary and to close, here's a quote from the "Praise for" section of the book by the parents of an adult child with BPD.  Jim and Diane Hall who are also family educators for the National Alliance on Mental Illness (NAMI) and the National Education Alliance for Borderline Personality Disorder (NEA-BPD) state:

The title says it all!  Dr. Manning explains what she has learned about the true nature of BPD from the experts themselves -- those who have the disorder.  She shows family and friends how our instinctive responses to the crises associated with BPD are frequently ineffective or even harmful, and illuminates what we can do differently, providing practical, incisive, step-by-step guidance.  The book helps readers understand their complicated relationship with a person with severe emotion dysregulation.  It provides valuable tools for dealing with self-harm, suicidality, and hospitalization decisions.  Of crucial importance, Dr. Manning clearly affirms that BPD -- and the pain experienced by those who suffer -- is real.  We highly recommend this book.

Intruiguing books re judgement/decision making, neuroscience, and borderline personality disorder/emotional dysregulation disorder

I haven't posted here for quite some time.  Instead, I have been reading books (for fun as well as to learn more about BPD/ED) as well as continuing to recover from unexpected surgery earlier this Spring.  The last took some starch out of me but at the same time the situation was brought under control and I feel a lot better.   I caught up on a lot of my reading, too.

The books are somewhat related. 

The first, which I've been working slowly through because it's so thought-provoking, is Daniel Kahneman's Thinking, Fast and Slow.  While on a plane last week, I laughed out loud after finding myself making a choice that wasn't the correct answer.  You'll have to read the book to find out what I'm talking about.  The recipient of the Nobel Prize in Economic Sciences, Mr. Kahneman, a psychologist, incorporates his important work with judgement and decision making.

The second, Brainwashed - The Seductive Appeal of Mindless Neuroscience, by psychiatrist Sally Satel and psychologist Scott O. Lilienfeld , was recently reviewed in the Wall Street Journal.  I found the premise noted in the review interesting enough to buy the book because I recently had a long conversation about the subject matter with a neuropsychologist.  Although I do not know yet, since I haven't read this book myself, I suspect that Kahneman's book and this one will further illuminate some of the problems that can develop in neuroscience using small sample sizes and techniques that are still becoming better understood.

And then just this week, David Brooks of the New York Times just wrote an interesting review of Brainwashed as well as commentary titled "Beyond the Brain" [June 17, 2013]  noting, "It’s a pattern as old as time. Somebody makes an important scientific breakthrough, which explains a piece of the world. But then people get caught up in the excitement of this breakthrough and try to use it to explain everything."

The third, and the one just recommended to me this morning by a therapist skilled in DBT, is Loving Someone With Borderline Personality Disorder by Shari Y. Manning with a forward by the can I say creator of DBT, Marsha M. Linehan.  The subject matter is an ongoing challenge for me yet I want to remain an ally as best as possible for my family member.  I look forward to reading it and returning here to provide a review.

May is National Borderline Personality Disorder Month

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.

The dilemma of long term illness

I've put down my "pen" for awhile.  I took a long break for myself secure in the knowledge that a team of very dedicated people was figuring out how to move forward on literally a day-to-day basis and that I not only needed to emotionally disengage but also needed to trust the process.

Earlier this year I did pull together a few articles and news items about entrenched eating disorders.  Eating Disorders can be long term battles.

After this hiatus that included a wonderful change of scenery, I returned to reading (I had thought I would just lurk) posts in a variety of places and came across a discussion about "walking away."

I believe "walking away" is different from "emotionally disengaging" - at least the semantics to me indicate a difference.  And, I have chosen never to do this in the more than 24 years that ED has been present in the life of my loved one.

Here's a piece (somewhat modified) that I recently wrote to address why I will not walk away.  The quote at the beginning of my post below is thoughtful and important.   However, there's more to the picture and here's my take.

Quote:

As it has been said many times, sometimes it's only when those individuals finally get tired of what their lives have become that change occurs.

I fully agree with this statement.

However, in some cases the likelihood of death occurring before this status is reached can be very high.  I know this.  I have witnessed this.  Scarily close.

If insurance companies are starting to redflag people who "fail" treatment [apparently this is happening], I would ask whose failure is it really? It's not just that of the person whose brain is altered by starvation and purging or binging.

I firmly support the idea that re-nourishment and re-establishment of positive behaviors takes more than 3 months and I become furious when I hear that an insurance company has stopped payment for treatment of this insidious set of diseases.  I would advocate for a year! and early on there was a program, I believe in California, that did offer a year.  But this was many years ago and funding dried up.  As I've written here before, not all families have the wherewithall to put Maudsley into practice in their home.  In addition, sometimes family based therapy in combination with re-feeding at home just doesn't work.
 
It's a very rare insurance company that provides treatment for longer than three months. And the thing is, more time is absolutely necessary to break the bonds that ED has formed with the brain of the person with the disease/brain circuit disorder.

The second problem that can develop is, for example, as a person with Borderline Personality Disorder as a co-diagnosis (and even this is a hurdle because many doctors, therapists and therefore insurance companies do not yet accept/recognize BPD as a brain circuit disorder; rather they identify BPD as a personality disorder) who starts to get a handle on what is going on, it's as though a red cape is unfurled in front of some of them instigating behaviors that completely disrupt their ability to continue in an environment labeled "willing to be here." Private facilities require that an adult client be "willing to be here."

I have witnessed this so many times. I can personally recount the experience of my loved one making the firm decision to get well and taking the responsibility of getting into a facility her responsibility. For one month I drove her at her request to obtain physicals and labs and doctor's visits and therapy, etc., etc., etc. to obtain all the documentation she needed to be admitted to a facility. She did the work; I provided the transportation. All was set. She was accepted. She struggled in the beginning to eat as do most who have an ED. She gained weight. She gained strength and then bingo! her BPD/ED combo took charge and she was asked to leave even though the part of her who knew she needed to stay begged to stay while the other part totally interfered. I know this happened.  Nadia Shivak in her book Inside Out: A Portrait of an Eating Disorder illustrated this very simply in words and drawn pictures.   [The reference is in my list of books on my blog.]

I wish private residential facilities would change their policy of not continuing to work with a client who isn't willing.  I believe this hurdle must change even if it's against the person's will because that will is still dominated by disordered and distorted thinking (refer here to the Keyes Starvation Study) for several months.

I don't think this hurdle is only for those with BPD, either. An addiction is a terrible brain chemical change that undermines a person, whatever that addiction is. It takes a change of heart and mind to be willing to get on the road to recovery and to avoid whatever it is that's addictive.

How? I think this is the question of the hour. When it comes to food -- which is life, along with water here in the desert -- this particular addiction (which I believe an eating disorder becomes) is deadly in a different sense. Alcohol isn't a source of life; neither is, for example, heroin or crack or percocet. There is a difference.  

Researchers and doctors and insurance companies and parents and loved ones must come to recognize this fact.

One extraordinary team has come to this conclusion and is doing all it can to create an environment to bring about this change of mind in the sense of ingrained behavioral patterns. The will to live has never left the person I am talking about but the disease and the addiction it created interfered big time and the claws of that disease and addiction go very deep.   I believe this change can happen.

May I respectfully say that "walking away" isn't the way I would word what must be done for people with eating disorders whose disease is entrenched. Having stood by as an ally for 24 years, I firmly believe this. As a survivor of anorexia/bulimia, I firmly believe this. I didn't have the additional brain circuit disorder component nor, thank God, was I cursed with an addictive brain so strong as to turn to other behaviors that further interfered with my choosing (yes, finally choosing) to get well. Others aren't that lucky.

BPD and ED - a view from the trenches by Evelyn Sharnov in Psychology Today

Warning:  as I write below, this links to a very powerful and potentially triggering article.  The thing is, it's real.

Powerful and very real is this story - In Extremis Part One - by Evelyn Sharnov that was just posted on  the Psychology Today website blog.

Here's the link if the above highlighted title link doesn't work.
http://www.psychologytoday.com/blog/notes-the-frontline/201206/in-extremis-part-one

I want to highlight two very important points:

First, that she acknowledges what so many baffled parents have struggled with:

"A borderline personality disorder sometimes forms in response to triggers like abuse or abandonment, real or perceived—but not always. The origins of the disorder are a mystery at its core."

And, second, that this illness is treatable and must be addressed as soon as possible for the person affected.

An excellent book just out is by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D. titled Borderline Personality Disorder:  New Reasons for Hope (A Johns Hopkins Press Health Book, 2011).

I reviewed this extremely informative book here.

I know it's hard to hang in there with someone who is fighting this what I believe at its basis is a  biological brain disorder.  And, as illustrated in the story, Annie also has an eating disorder - a common combination.  But as Laura Collins relates in her talk  - powerful with terrific visuals to accompany the text - she presented at the International Conference on Eating Disorders in Austin this past May 2012, we must not forget that, again, these are biologically based illnesses of the brain and not willful behaviors and for that reason the people who are overwhelmed by these illnesses need our help, not our abandonment nor our disdain.

Book impression: Borderline Personality Disorder - New Reasons for Hope

As readers here know, in 2007 our family finally was provided with information that explained years of illness, sadness, and failed treatment.  Two psychiatrists at two different institutions diagnosed Borderline Personality Disorder (BPD) and gradually, since that diagnosis, so much has fallen into place.
  

Like many parents, I began to read and digest as much as I could about BPD and you'll find several books on this topic in the list of books I've provided here on my blog.  I've also written several posts on the topic.   Early on I came up against the same themes as many parents have when the myths about causes of autism and schizophrenia and now eating disorders were discussed.  As time has gone on, the term "biologically based" has been added to the framework.  Environment, I believe, is an important factor, too, if for no other reason than to support the concept of family education to assist the person with a diagnosis of BPD to get on the road to recovery.  I've written quite a bit about this concept as it relates to eating disorders and BPD on my blog, particularly under the topic of communication.

Randi Kreger's book, The Essential Family Guide to Borderline Personality Disorder:  New Tools and Techniques to Stop Walking on Eggshells (Hazeldon Press, 2008) was the first book to help me understand the ramifications of this diagnosis as well as what positive things I could do as a parent to help.

About a month ago, I came across a reference to a book published just last year (2011) by the Johns Hopkins University Press as part of the Johns Hopkins Press Health Book Series.  It's available in paperback, which is a wonderful decision on their part because the book is affordable for parents keen on learning more.  For that matter, it's also a valuable book for the person diagnosed with BPD, as an entire chapter is directed towards that person - "If You've Been Diagnosed" (pp. 215-228).

The book is Borderline Personality Disorder - New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D.

This extensive and grounded work incorporates the latest research about and treatment of this diagnosis (dx). The book is directed not only to the therapist but also to the person diagnosed with BPD as well as to those who are family members, friends and even employers and co-workers. 

The book is divided into four sections: Understanding the Problem including clinical discussion as well as "personality"; Causes - encompassing an enormous array of information from genetics to environment; Treatment, particularly with emphasis on the difficulties when a person has co-morbidities and the sometimes ineffectiveness of medication (some believe that medications are inappropriately administered and in fact, some like the benzodiazepines compound the problems inherent in addiction) under these circumstances while looking harder at the necessary therapeutic relationships and need for truly understanding this disorder; and finally How to Cope, How to Help - written for the person with the dx and for parents, partners, friends and co-workers. 

The chapter for the person with the dx is especially frank but also supportive with solutions, an approach that I liked very much, particularly the attitude that the person needs to engage, take responsibility, accept and commit.  The section titled, "Looking for Happiness in All the Wrong Places" offers (p. 226) "...a psychiatrist or psychotherapist cannot reveal to you the meaning of life, or tellyou why your life is worth living.....Treatment for borderline personality disorder can help you learn how to cope with setbacks and disappointments better, negotiate relationships more successfully, rein in impulsiveness, make peace with a traumatic past and put it behind you, and many other important skills and lessons.....But your happiness is your responsibility, just as it is for everyone else."

The authors emphasize that the tide is turning about the dx for the dx is now being called "the good prognosis diagnosis."  They promote the idea that the nomenclature is incorrect. Not only that, but they believe the nomenclature fosters the person with the dx to think something is inherently _wrong_ with them since the word "personality" conveys such a strong definition of self.

The authors include a section titled, "International and Cross-Cultural Considerations" that trounces what some have proposed as a dx only found in the United States.  Clearly there is more at work than just environment. 

The book, to me as a layperson, is very dense in the initial sections (meaning one needs to "chew" on what one is reading)  but well-written and includes a terrific definition with examples of "splitting", something I had a hard time understanding from previous books that I've read. 

The epilogue as well as the text emphasizes, given the complexity of this diagnosis -- meaning the many aspects of emotions and behaviors, that a team of professionals skilled in differing areas must be assembled to treat the person.  It's unlikely that one professional can because, as I've been told by several people now, one who treats this illness must receive ongoing support and counseling themselves to avoid being drawn into the whirlwind created. 

The authors "distill" the disorder by writing (p. 251),

"Borderline personality disorder develops when a child born with extremes of temperament and a biologically rooted difficulty managing emotions encounters a mismatched childhood environment. This mismatch may be quite subtle or quite pathological but is experienced by the child as inconsistent and unpredictable, leading her to develop a damaged sense of self and the expectation that others will continue to be inconsistent, unpredictable, and ultimately unreliable and abandoning. This in turn causes profound emptiness and hopelessness to dominate her emotional life. To cope with her emotional extremes, and her desperate and painful unhappiness, she develops self-destructive coping behaviors like addictions, eating disorders, and self-mutilation. Frequently, these individuals also suffer from biologically based mental illnesses that exacerbate all their other problems and prevent behavioral and psychological treatments from helping them.
....Borderline personality disorder results from an interaction of genetic and other biological factors, inborn temperament, and childhood experiences and is usually complicated by the development of abnormal behaviors and psychiatric illnesses. All these factors require therapeutic attention, often by different professionals using different approaches."
 

As I wrote above, I am encouraged by this new approach to this illness and enlightened by how important it is to bring therapists up to date on the treatment of this disorder (sounds familiar, I am sure, to those promoting a change in the way eating disorders are treated).  Valuable techniques are included for therapists.

I also was pleased to just come across (May 2013) this book review by the esteemed researcher in the field of BPD, Joel Paris, M.D., Professor of Psychiatry at McGill University in Montreal.  The review appears in Psychiatric Times, Volume 29 #4.

Finally, thanks to the Epilogue, I learned that this month (May) was established by the United States House of Representatives - unanimously - in 2008 as "Borderline Personality Disorder Awareness Month."  How fitting that I discovered and read this book this month.  How important it is to promote what the authors have assembled for our increased ability, as parents, to advocate for our loved one(s).

The Iron Will - both hers and mine

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

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


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

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

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

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

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

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

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

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

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

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

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

Time will tell.  One step at a time.