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

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

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

but around in awareness.

~ James Thurber

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

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

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

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

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

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.]

Parents - Setting Your Boundaries, Marjie Ruth

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

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

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

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

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

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

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

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

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

Hope you have a decent week.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

MarjieRuth1@gmail.com

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

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

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

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

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

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

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

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

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

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

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

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).

What about the "contributing to" part?

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

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

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

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

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

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

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

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

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

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

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

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

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

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


So, how to address all of this?

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

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

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

Rules of the House When an Adult Returns (or for a teen who already lives there)

[The following post may be triggering for those with active eating disorders.]

The topic of rules of the house has come up now and then on a site I frequent for parents of those with eating disorders.  We certainly needed to address this subject six years ago when my very ill loved one rejoined our household after living either independently or with a significant other for more than ten years.  Our goal was to help her stay alive and get her into treatment when she was willing to take that step. Parents of adults returning to the household might want to consider this step, too.

Other parents need to bring up this subject when things go completely out of control in their household when ED (the Eating Disorder) moves in and takes over the mind of their teenager or younger child although this post is directed  for parents of teens and adults.  

In either case, many have experienced the aftermath of midnight binges, the discovery of money missing from the community food jar or even checks and credit cards from a purse/wallet, food wrappers in a personal closet or under the bed, a clogged toilet or shower drain, stashes of food not eaten or bags of regurgitated food somewhere in the room or in the garbage bin, etc., etc.  Others have been shocked to discover their loved one has been out and about late at night, either on foot or in the car.   For some, suddenly all the behaviors a parent thought were part of (relatively speaking,  given teenage years) peaceful daily living in the house have been replaced by those of a seemingly rebellious person intent on creating mayhem.

Once I shared some samples from teenage rules kinds of sites on the above-mentioned eating disorder site, I read a range of reactions.  Some parents simply shut the door and continued taking their child to therapy, figuring the behavior might improve.  Another couple I know locked their bedroom door each night; another put a lock on the pantry; another, a lock on the refrigerator; one kept no food at all in the house for a period of time.  Some took away car or other privileges.

We took the attitude of "our house, our rules." Given the age of our loved one, we're older, too,  and not as amenable to disruption as younger parents might be.  We did find ourselves retreating to our bedroom on occasion and shutting the door for our own time out.  But for the most part, because we negotiated rules with our loved one who also consulted her own therapist before the final draft was acceptable to all, we reached agreement on a  list that worked for our family in our situation.  Every family is going to be different.  I discuss this on a post re communication, too.

The suggestions of the communication method LEAP help a lot in this process.

I  went searching for the original draft because it was fairly comprehensive and might serve as a working template for those considering inviting their adult back into their household.  Of course, the list will pertain to their knowledge of their loved one's behavior.  We've heard comments from others with an adult with an eating disorder like "our adult is behaving like a teenager again!"  And, of course, these documents can always be renegotiated as things get better or possibly become worse.  

We do recommend  that the document be treated like a contract and that the parent(s) be prepared to firmly stand behind the boundaries listed.  As many parents have discovered, it's not uncommon for one with an eating disorder to try to get around the rules.  Secrecy is a major tool.  So is the ED's manipulation.

As will become obvious very quickly, the parent(s) must follow these rules, too!  The expression, do as I say and not as I do does not work in this situation.

Here is that draft drawn from several sources before we altered it to fit our situation living here in the desert with scorpions, cockroaches, and crickets:

1.         All communication channels will remain open between and among all members of your team, including your parents -- with no restrictions. 

[this one is key; without this provision things can get out of control really fast]

2.         There will be no physical or verbal abuse in the home.  Verbal abuse includes yelling.  This includes obscene gestures, as well.  No slamming of doors. [We know a parent who removed the door to his adult child's room; another who removed a teenager's door.]

3.         Treat household members and property with respect.

4.         Your room must be clean before you leave for the day/go to school, etc.

This means:  bed made, clothes picked up off floor and either put in drawers, hung in closet, placed on appropriate shelves or in dirty clothes basket; other things put away in drawers or ordered neatly on dresser surface.  

5.         Kitchen: Dishes are not to be left in the sink. Wash and put in dish drain/ or place in dishwasher. Clean up any spills right away. Clean up eating area after each meal including floor

6.         All food is to be eaten in either the kitchen or dining room area.

7.         Kitchen/pantry is off limits after dinner and before breakfast.  [For those parents new to bulimia or binge eating disorder, those with bulimia or BED often may binge in secrecy either in their room or in the kitchen after everyone has gone to bed.  The purpose of this rule is to take a stand against binge eating to make it clear that this behavior is not allowed.]

8.         No visits to the bathroom for at least 45 minutes after meals/snacks 
[Often a loved one will retreat to the bathroom immediately after eating to purge what s/he has eaten.  This rule is to prevent this from happening.  After 45 minutes to an hour, a lot of the nutrients eaten have been absorbed so although vomiting will be very detrimental for electrolyte balance, calories will not be as severely affected; ditto, by the way, re laxatives]

9.         Laundry room: place only washable clothes in washer/dryer.  Clean lint filter as well as washing machine filter after each use.  Work with parent(s) to learn operation.

10.       No activity in common areas before 5AM. [Sleep is critical!]

11.       No leaving the house by any means after bedtime and before 5 AM (see item  #10)
[we have a house alarm that signals when a window is opened......]

12.       Curfew is  by 6 pm for dinner (this is negotiable depending on snack and dinner time)

13.       Parent(s) bedroom/bathroom is off limits

13.       Telephone - early morning cellphone calls  (before 7 am) need to be made in your room; moderate your voice.   House phone: No long distance or toll calls without prior permission.

14.       Clean common areas after use.  Pick up personal belongings and put them away in the evening before bed.

12.       Do not borrow or take any item in the house without permission.

13.       No visitors in the house without parent(s)' permission and presence.

14.       Chores must be done per list.

15.       No smoking/alcohol/illegal substances -- depending on your loved one's behavior(s) re brain function-altering substances

16.       No diet soda or other foods with aspartame; caffeine only in the morning incl all beverages or Excedrin (the purpose of this rule is to help you sleep at nighttime).  [On this point I believe that aspartame is toxic at the levels those with eating disorders often drink soda or add packets to coffee/tea and Excedrin has caffeine.]

17.       Room and Board is $xx/week.  Some might add points about gasoline allowance; car usage; allowance; missed appointments and charges for those if parent is paying; fines incurred, etc. or of course not charge for room and board.

MEALS

1. Three meals a day plus two snacks.  Breakfast and dinner taken here at the house unless dinner is scheduled at  with others.  Lunch here if you are here; pack a lunch or plan on purchasing lunch if away from the house.  [This item is important for those who are helping in the re-feeding process.]
2. No forbidden foods unless doctor prescribes specifically (e.g. gluten-free).
3. We will work with you on the menu and intake to slowly re-gain weight to a healthy level [respect for the adult that s/he is]

CHORES LIST

1.         Help with house and yard work as requested [depending on physical condition]

2.         Keep the guest bathroom clean - floors, sinks, toilet – and personal belongings in appropriate places.  Hang towels and washcloths neatly on the racks.

4.         Keep your room clean - dust/vacuum as necessary

5.         Change and wash your sheets at least once a week, wash your towels at least twice a week

CONSEQUENCES:  Non-compliance will result in you being asked to leave the house and make your own living arrangements.

I agree to these rules: _________________________________ Date:  ______________________

Report - Day One -The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Earlier this year I received a notice that the F.E.A.S.T. community would be hosting a 2-day conference in Alexandria, Virginia.  I also knew, because I'd received several emails, that the National Eating Disorder Association would be hosting a conference in Los Angeles the month before.  What to do?  I could not attend both; I had other plans for October but not that weekend; and I had been a staunch supporter of Laura Collins since I first encountered her book Eating with Your Anorexic - How My Child Recovered Through Family-Based Treatment and Yours Can Too published in 2005, the year my daughter, slowly declining since 2002 after she relapsed, careened towards death and needed intensive treatment.

My thought was that once she was released from treatment, she could live with us and I would try to use the principles of the book and the other references.  My daughter was in her early thirties by then, an adult, and determined to do things on her own.  The "parentectomy" encouraged by the treatment center was successful and my hopes of transitioning her for a few months went by the wayside.

I decided to go to Alexandria, Virginia since I had attended the NEDA Convention just a year ago,  to meet, hopefully, many of the parents who I'd met on Something Fishy/Around the Dinner Table and especially, Laura, with whom I had been corresponding off and on for awhile.

I was intrigued by the purpose of the Symposium, too:

Moving forward from a history of being blamed and marginalized, families will collaborate with the scientific community to re-write the map of options and actions for families.  A new era of science-based, family inclusive, and truly optimistic eating disorder treatment begins now.

I've decided to take the agenda that we were given and use it to describe my personal journey and my "take-aways" through the next few days, starting with Wednesday night at dinner.

The dinners at the end of the day deserve a special mention.  As my son rightly has noted, I'm more of an introvert than an extrovert - perhaps somewhere in the middle.  So, I have have found it difficult to plop myself down in the middle of an event and easily connect with people.  I've been working on this all my life but it's still not easy for me.  As well, my sensitivity level is such that after awhile too many people and too much noise leads me to escape for awhile to regroup.  Last year at the NEDA Conference I often found myself adrift and still very much overwhelmed by my daughter's severe illness.  Attempting to connect was hard and there weren't to my way of thinking opportunities to do that after a long day.  And, besides, truthfully,  I was really tired even before I got there but eager to learn as much as I could.  As my blog after that event illustrates, I did learn a lot and became a major supporter of NEDA.

This year, just knowing that there would be an organized dinner at which I could just show up and sit next to someone, helped me a lot.  I joined a large group the first night at a "George Washington ate here" place - Gadsby's Tavern and walked there with a couple - parents - from Michigan and a pediatrician from N. California.  A great way to get the evening started.  Then I sat with them at the table, too.  We had a good time!

So back to the beginning.......

The conference was at the Holiday Inn in Old Town Alexandria, Virginia.  I obtained lodging there.  A grocery store was across the street where I purchased a few things I like to have that I don't want to haul in my suitcase.  The facilities worked well - the large dining room (where we enjoyed lunch each day) was separate from the large main meeting room.  There were break-out rooms along the corridor with the corridor and side corridor being wide enough to provide room for participants as well as snack tables, beverages, the daily morning buffet breakfast, and the information/registration table.  My room was large and comfortable and was on an upper floor, something I appreciate when traveling by myself.  The entire hotel is non-smoking, another plus.  A USA Today appeared at the door each weekday morning and  The Financial Times was available in the lobby on Saturday morning when I left early for the airport.  Incidentally, the latter is new to me and I loved the variety of articles.  I finally got around to reading USA Today in the evening right before bed.

Thursday morning breakfast was served beginning at 7 a.m. and Laura Collins, F.E.A.S.T. Executive Director, was introduced by her daughter to start the program at 8:30 a.m.  I felt that Laura's opening remarks drew us all together and laid out the plan for the conference and our collaboration.  I noticed early on that Dr. Doug Bunnell, past President of  NEDA and a charter member of the Academy for Eating Disorders was there - a plus for the idea of collaboration, too.

A highlight of any conference (to me) is the coordination of the introduction of speakers and transition from one speaker to another.  So well done!  Having been a member of Toastmasters for awhile, I learned that this aspect and skill are very important to set the professional tone.  Carrie Arnold and Stephanie Milstein, PhD, served as the Masters of Ceremony team, coordinating the hand-off of speakers for two days.  Carrie is a writer, author - Running on Empty and Next to Nothing,   and blogger (ED-Bites.com) in recovery from anorexia.  Stephanie is a doctoral level clinical psychologist licensed in the state of Michigan.

I certainly cannot report everything stated; however, I will provide some of the takeaways that stuck with me. It's my understanding that information presented at the conference will be posted on the website at a later time.

I gathered from the two-day schedule that we would first be reminded of where we are in terms of what's come before and what is happening now.  We'd also be alerted to what to look for and what to set aside.  From there, thanks to Ruth Sullivan, we'd get a look into another activist's method for gaining traction and learn about current efforts.

The second day we'd move quickly into experiences and what has worked, build on the conversations that had been going on for more than twenty-four hours at the conference as well as those outside involving all the organizations having to do with eating disorders, and also start to look forward using the questions provided including "where are the new parent activists going to come from?"  From there we'd get some guidelines, and then hear from Dr. Thomas Insel, director of NIMH, who would summarize and give us a heads up on where research is headed.  The question and answer period to follow was designed to provide the panelists here represented by the acronyms of their organizations (NIMH, EDC, BEAT, AED, and the AAP) with our concerns as parents and to obtain their feedback.

Finally, we were to be given the opportunity to hear from four people in recovery from the United States, the UK, and Australia.  A rather wonderful way to wrap it up.

The first speaker was Dr. James Lock, a professor of Child Psychiatry and Pediatrics in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine where he also serves as Director of the Eating Disorder Program for Children and Adolescents.  He is co-author with Daniel Le Grange of the important book, Help Your Teenager Beat an Eating Disorder.  Their work has changed how eating disorders are treated. His research includes 4 current NIH funded projects and his recent research focuses on integrating treatment research with neurosciences in eating disorders.

His presentation, titled Rocky Terrain: Challenging Ideas About How Professionals Look at Families began with a photo of a pile of rocks.  He steered the direction of the conference towards better understanding of why many in the Eating Disorder Treatment Field use outdated methods (they were taught that way and find it difficult if not even terrifying to change what they are so invested in) and then on towards how to encourage change.  He reminded the audience of the original opinions about autism and schizophrenia and eating disorders, citing several well-known names whose theories are no longer mainstream.  He also reminded us that medicine is a "practical art" and used Greek mythology imagery to discuss the old way love affair with etiology that eventually crashed on the shores.  He reminded us, too, that not everyone responds to the same kind of therapy and expressed concern about the insular quality of treatment centers.

This reminder was an underlying theme that was repeated throughout the conference.

I connected with his list of characteristics of a good parent in a crisis situation:  enmeshed, rigid, anxious, over-involved.  As he stated, when a child is ill, why not?  He also referred to a study that looked at parents of children who were cancer survivors and found many suffered from PTSD even ten years later!

Becky Henry, author, speaker and coach and member of the F.E.A.S.T. Board of Directors moderated a question and answer period involving those present with Dr. Locke.  Some of the highlights I grasped  included:

His suggestion that parents remember a therapist may have been taught in the "old way" and need to be approached with the initial question, "Do you know about Family-Based Therapy?"  If amenable to hearing about the technique, share information and get a sense of what might be next.  If not, move on.

To the question of when to start therapy after diagnosis, Dr. Lock referred to the responses of the patients themselves:  1/3 wanted to work; the other 2/3 were not ready yet.  The conceptualization has a lot to do with the reaction of the 1/3 who said they were ready to work, he said, and when healthy behaviors are disrupted for a long time, the individuals take longer to shift back to healthy behaviors.  He said art therapy was okay but otherwise to follow the suggestions in their book and manual at the beginning.

Re underlying traits, acknowledging that some do not fit the profile, he said there is a continuum and that anorexia can exacerbate these such as anxiety but for others, not at all.

Re boys with eating disorders - he remarked in his experience that although the frequency of illness may be less, the personality and behaviors are similar to those of girls.  He said his studies were the first to include boys and noted that the content of an assessment for boys and men needs to improve; a thorough and in-depth study is needed.

Following the break, Cynthia M. Bulik, PhD, author of the book Crave (see my review elsewhere on this blog), and Director of the University of North Carolina Eating Disorder Center, concentrated on the avoidance of pseudoscience and misinformation.

She underscored the complexity of eating disorders and reminded us that a cure will not be simple; genetic and environmental information blend in unforeseeable ways. She advised us to avoid blame and sensationalism, recommended Carrie Arnold's blog (ED-bites.com), and emphasized again that "no one shoe fits all".  This attitude is important, especially for those fighting an ED for whom treatment did not work (including FBT).  She said the emphasis on only one way can lead to what she called evidence-based guilt on the part of the patient.  In other words patients can be overwhelmed by guilt when they are repeatedly told that x treatment works and yet can see for themselves in their own experience that it does not.  The no one shoe fits all information can also help parents help their children look for something else rather than just give up.  Bulik also reminded all of us that we mustn't let desperation interfere with our critical thinking as we examine information presented to us.

Next up was Dr. Walter Kaye, Director of the University of California, San Diego Medical Center Eating Disorder Treatment and Research Program.  Building on what Dr. Bulik had said, he noted that to date our evidence base is limited; a lot of research involving more participants needs to be done.  In other words, currently there is little long-term outcome data.  This will change as more funding for such research becomes available and our work is to agitate for that funding.

Dr. Kaye briefly summarized what is known in the fields of genetics, biology and traits.  He noted that 50 to 70 percent of those who develop eating disorders recover by their mid-twenties.  Why?  He repeated that we do not have enough data on the course of the illness to answer that question.  We do know that some people fit a profile; others do not and that traits continue after the eating disorder is gone that need to be addressed.

Dr. Kaye drew attention to the state of programs for the treatment of eating disorders.  He suggested that programs need to provide more data to illustrate that their approach can work (if the materials say so) rather than just publish blanket statements about their success.  He said in our search for a program we need to know who is involved in the direct care of patients and especially the time they've spent in training, their expertise, their skills and direct experience with those with eating disorders.  As an aside, he observed many sites will mention they have a staff but will not provide a list of who's currently on the staff, whether they are full time or part time, and what their credentials and background are.  He emphasized the importance of staff training in the facility's environment. We, he said, should be able to contact the program and evaluate the owner's expertise in the field, as well.

We, he said, should look for constructive skill training with real life applications and preparation for the patients.

Dr. Kaye summarized the need for data, better knowledge of genetics and of behavioral wiring, improved treatments, outcome studies and Centers of Excellence which provide intensive internships in those improved and evidence-based treatment programs.  We all should call for the intensive re-training of all those involved in the treatment of eating disorders.  He repeated that currently we have what he termed terrible longitudinal data and expressed the hope that with funding such as he has now received, he will be able to add to that data.

In closing, Dr. Kaye announced that he had received funding to conduct brain imaging studies on a cohort of those in recovery between the ages of 18 and 45, who are not on any medication, and for women those who have menstrual cycles.  The funds will pay for travel to his research center and expenses while there.  Here is a link for more information about the study and eligibility.

After a welcomed break for lunch following an intensive morning, we returned to hear from Dr. Ruth Sullivan and her summary of the history of the organization that she helped found - the Autism Society of America - and what we, as parent activists, might take away to implement in order to gain traction.  This link to an interview provides a lot of the information we gained yet for those present her personal spin and sense of humor brought the history of the Autism movement to life.

Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program.  Some of the points that were highlighted in the discussion included:

• work to avoid infighting
• define common ground
• take a stand
• obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
• contact state and national legislators
• ask for what you want and work with other ED organizations to say it in the same way
• involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
• develop a forceful and attention getting PSA
• continue to research the data and the science
• demand better quality of care
• invite legislators to meetings, to breakfast
• work to agree to disagree and still talk
• respect the dignity of others

Re the PSA, I was quite taken with the suggestion to develop a poster/an ad/a PSA using the photo of a young person apparently in terrific health coupled with the words, "this is the face of anorexia".  As we learned during day two, there is a theory that eating disorders like other developmental disorders first begin below the surface, so to speak, and that the actual behaviors of the disease itself indicate a late stage in this disease.  This poster would speak to that fact and experts might want to work on what the poster might say.

Wonderful activists Jeanine Cogan, PhD, and Kathleen MacDonald, of the Eating Disorder Coalition came to the microphone and continued the discussion, specifically geared towards working with legislators.  They highlighted the F.R.E.E.D. Act and its potential far-reaching effects on policy and practice in this country including, for example, the establishment of Centers of Excellence.  They both emphasized the importance of the stories of those affected by eating disorders and gave examples of the EDC's effectiveness to date.  They encouraged those attending to participate in lobbying at the Capitol.

We closed out the day with the opportunity to attend one of four offerings in Activist Training:  Government/Policy Change; Traditional Media and Public Speaking; Virtual Media; and Online Social Networking.  I chose to attend Carrie Arnold's group to discuss Virtual Media since I've been enjoying working on my blog and am wondering how I might improve it.  Carrie focused first on on-line news-sites and the need for new information all the time that is presented in an exciting, edgy and sometimes but not always negative (sensationalistic) way.  She encouraged those of us who visit such sites to click on "like" if we do because the number of hits influence the direction of future articles (as well as bring in advertising income) and to not share a story if we disagree with it.  Carrie then outlined some poinst to know about blogging, using the history of her site as an example.  She reminded those present that the information becomes archived forever on the internet.  She advised using pseudonyms if one is concerned about privacy and she gave us tips about how to gain more information about a subject in the blogging and twitter world.

After resting up, I joined quite a crowd at the Bilbo Baggins restaurant where we commandeered a large room and had a raucous but very good time.  I sat with a new group of folks and was fortunate to meet several moms whose names were familiar to me on Around the Dinner Table and to sit next to a woman in her twenties who, after battling anorexia for quite some time, established recovery by researching the Around the Dinner Table Forum and extracting menu and food options to give herself the structure she needed until she re-nourished herself and moved on.

I was glad to get to bed shortly after that and enjoyed another good night's rest in preparation for the day ahead.

All in the Family......... and elsewhere

I knew I should not have picked up the Wall Street Journal before my walk this morning.  I love this section and usually learn so much in a few short pages.  The temperature's quite cool  today after a terribly hot week last week and I've opened all the doors as well as the one to the screened porch.  Our cat is in heaven and hasn't come back into the house for a couple of hours now.

As usual, the Personal Journal's Health and Wellness section that appears on Tuesdays is crammed with interesting information about Sleeping Types (are you a short sleeper?), other options besides bypass surgery, food addictions (I hope folks pay attention to this study because as I've said previously here, I do think there's a genetic link to all of this), and especially the article titled, "Do You Get an 'A' in Personality?" 

In an earlier post I talked about Family Week at a residential eating disorder facility, communication,  and the value of the exercise that uses Gary Chapman's book, The Five Love Languages.  Along comes an article that delves even deeper into the entire subject of co-existence and family relationships.  

One of the neat things about people is we can be related and yet be so different!  One family member might crave peace and quiet while another just loves to crank up the latest rap recording.  (The solution here might be headphones.)  Another might want everything to be "just so" while a supervisor might find "organized chaos" to be the answer in his/her office.  I'll never forget one summer when, having not too much to do while my three professors were on vacation, I "straightened up" one of their offices, placing books in alphabetical order and so on.  Well, although I did not get fired, I did get a dressing down.  Before I did this, he knew exactly where in each stack or where on the desk or table a specific article or book was related to a paper he was working on.  When I was done, his entire orderly (so to speak) world was upside down.

In this latest article, Elizabeth Bernstein grabbed this reader by noting in the first paragraph, "In the never-ending quest to help people co-exist peacefully with their spouses, children, siblings and in-laws, therapists are turning to tools used to assess the psychological stability of pilots, police officers and nuclear-power plant operators: personality tests."

Bernstein focuses on the family, especially one with a teenage daughter who moved back into the household and who has an entirely different lifestyle from that of her parents, who are goal-oriented - mom's an accounting consultant and dad's an attorney.  Their daughter, Maggie, "....is an introvert, a feeler who craves harmony and needs time and freedom to discover what she wants to do."

Bernstein then notes that mom, after she and her husband and Maggie took the test and heard the results, said, "It helped us see that she is a different person and will have a different path."

Key words.  Important words.  Our children are different people on different paths.   

I think this article is especially important for families whose son or daughter (or both or all) struggle with perfectionism, anxiety, and an eating disorder.  As many specialists will note, particularly those who are up-to-date in the eating disorder field, for progress to be made in a family whose member is struggling with an eating disorder, there needs to be a calm and nourishing (pun intended) environment.  If the family members do not understand each other on a much deeper level, it's more difficult to create that environment.

For years this tool has been used in the workplace.  Perhaps the MBTI could be considered another window into the activities of a family, now that family members are increasingly -- thank goodness -- being accepted as members of the team.

Time for my walk!

The ED Voice and its Power - Understanding Your Loved One

Many parents do not understand what goes on in the mind of their daughter or son when they are overtaken by an eating disorder.  We must rely on feedback from them and others to comprehend how powerful and dominating the negative mind can be.

Three recent books explore this and the value of all is that they are written or in the case of one, drawn,  for the layperson rather than in the language of the medical/scientific community that can at times lose someone who does not have a medical/scientific background.  I value each book in part because the writer highlighted something that needs to be explored and discussed more - the ED "voice".  

These links may prove triggering to someone with an eating disorder.  This is truly written for parents and friends and definitely not for someone who is still fighting an eating disorder.

The first author is Harriet Brown writing in her book Brave Girl Eating - A Family's Struggle with Anorexia (Harper Collins, 2010).   I was delighted to find several copies of her book in Barnes and Noble a few days ago when I was just browsing to see what books on ED's are carried there.  I suspect the presence of the book is also a result of the fact that Harriet is coming to Tucson next month to participate in Tucson's Festival of Books as well as, I believe, to speak to the local chapter of the IAEDP.

In early notices about the book, a segment from the chapter "Before - What I Wish Everyone Knew"  was available to read and can be found here if you scroll down to page 2 of the actual book.  Harriet Brown writes of the voices in her daughter's head -- the negative thoughts that spring to life when one is struggling with an eating disorder.  These voices undermine the ability of the person to get out of the trap of an ED without the help of an advocate, re-nourishment and therapy.

The second book is Portia De Rossi's recently published  Unbearable Lightness - A Story of Loss and Gain (Aria Books, 2010).  She also candidly speaks and writes throughout her book of the ED voice that intruded into her life.   Here is a link to read her prologue to give the reader a sense of one person's experience with this but also that reflects the experiences of others.   She noted, and this is also very important, that the more on the path to recovery she got, the louder the voice became as the ED part of her mind became enraged.  Again, this is very real.  This voice can lead a person to self-sabotage everything they have gained in, for example, three months of treatment.

In an earlier post I created a link to a page on the website Something Fishy titled If You Really Knew Me.  This site carries some thoughts that are present, too. The thoughts were contributed by several people who were fighting eating disorders.

The third book is by Nadia Shivak who wrote and illustrated Inside Out - Portrait of An Eating Disorder (Antheneum Books for Young Readers, 2007).  Here's a link.  Nadia Shivak's images get to the heart of what she was feeling and thinking as she struggled with her ED from a very early age.  Her portrait of the ED as a dragon is very telling.  The picture of her tiny self curled up in the belly of the dragon speaks far more than any words could.

What I have learned from a long-time acquaintance with this disease is that the more entrenched the eating disorder is, the more a person's life, will, behavior, and thoughts are overwhelmed.  A normal life as many of us know it cannot happen without a lot of hard work.  The goal is to completely replace these behaviors and thoughts with an entirely different and healthier way of being,  living, eating and thinking.

To a new parent:  this indeed is a medical emergency.  Do not waste time.  The more entrenched the eating disorder is, the longer it will take a person to break free of it.

To a parent of an adult who has had an ED for some time:  please try to remain an ally of your beloved adult child and help him or her obtain therapy and guidance to get on the path to recovery.  I know, from experience, this can be a difficult prospect but even if that help is simply listening to them using, for example, this effective communication method called LEAP, you can make a difference.  If you can work with them to get them into treatment, so much the better.  I have written about possibilities in a different post on this blog found under the heading, Of Note.

P.S.  Dr. Julie O'Toole of the Kartini Clinic offers some common phrases we use and how they are "translated" in the minds of those with eating disorders.