What if .... solving the anorexia puzzle .... Charlotteshelix.net

Eating disorders have occupied my thoughts and actions for more than 40 years if one combines the years I was and then ten years later my family member began her own journey and continues to be snared by one.  Imagine how wonderful it'd be if one could take steps to help others avoid these disorders or even identify what could be done to change a thought process.  Imagine ....

Studies are beginning to open doors.......  People with imagination and character are changing things.

So far, I've taken three routes to participate in DNA studies.  The first was the Genographic Project offered by the partnership of National Geographic and IBM.  The goal was to collect over 100,000 DNA samples with the ultimate goal of learning more about who we are, where we came from, and how we relate as members of one (yes, one!) extended family.  You can learn more about this project here.

The project, incidentally, is on to a new phase called Geno.2 and more than 600,000 people have submitted their DNA sample.  Six hundred thousand people have participated!!

A few weeks ago, I picked up a paperback copy of Francis Collins' The Language of Life and read it in less than a week.  The story of the development of the analysis of DNA is quite fascinating and Collins writes so well for the layperson!  The book also points the reader in the direction of what is called personalized medicine.  As a result, I and two other family members -- possibly more because they're thinking about it -- decided to participate in 23andme's genetic study.  You can learn more about 23andme here.  In our own way, we hope to contribute to the knowledge being collected.  That knowledge will make a difference!

For an essay by Steve Kotler that appeared in Forbes Magazine on December 13, 2012, about the pros and cons of participating in 23andme, click here.

Then I watched this wonderful NBC 23andme special featuring Dr. Nancy Snyderman.  By the way, as Dr. Snyderman reports, you can also submit a vial of blood (rather than a vial of saliva as for 23and me) and about $4,000 and learn a lot more about yourself working with the company Illumina.  Hopefully this cost will come down for everyone and enhance the medical profession's ability to develop specialized treatment programs and target specific illnesses!

Meanwhile a new study with Dr. Cynthia Bulik at the University of North Carolina as the lead investigator titled the Anorexia Nervosa Genetics Initiative or ANGI was launched to identify genes that contribute to the development of anorexia nervosa.  "Contribute to" is an important concept when thinking about eating disorders.  I decided to apply to participate and was accepted.  They now have my vial of blood and my data will be entered into what they hope will become a global collection of samples that ultimately will help to identify contributing genes.

It was easy.  All I had to do was to ask my doctor to write a prescription to have my blood drawn at a local lab.  The lab handled the kit that was mailed to me, collected my sample, and then I wrapped it all up and took it to the main Federal Express shipping point.  (Apparently in Arizona satellite collection stations are not permitted by law to accept human specimen shipments.)  I've received notice that my sample arrived safely and is being processed.

This last point leads me to the main reason - person, in this case, and her name is Charlotte Bevan -  I am writing about all of this.  A cast of rather amazing characters including Laura Collins who not only founded the organization  F.E.A.S.T. but also shook up and brought along others to shake up the established way of looking at and then treating those with eating disorders, particularly anorexia, are behind what I remember listening to Arlo Guthrie exclaim - it's a movement!!!!

Carrie Arnold (the author of the above-mentioned ANGI piece that you can click on for more information) who has written books and maintains an informative blog, has crafted a piece titled, Charlotte's Helix, Charlotte's Legacy that you can find here.  Carrie's offering summarizes what hopefully is becoming viral now - the AN25K Challenge.

In honor of Charlotte Bevan (click here for more about her and the project) and her untiring work since 2009, the goal of all the people now involved is to bring funding to the U.K. with the ultimate goal of sequencing 25,000 genomes of 25,000 AN sufferers to help figure out what causes the illness and how we can better fight it.

I've sent in my check. Carrie  provides a link to where you can do that.  You can donate electronically, too.  Carrie also provides links to more information so  if you are unable to donate funds but would like to help, you can pass along the links.

Imagine.......

Called the Anorexia Nervosa Genetics Initiative (ANGI), this global effort aims to identify genes that contribute to eating disorders. The study aims to transform knowledge about the causes of anorexia nervosa and work toward a cure.
Professor Cynthia Bulik, at the University of North Carolina (UNC), is lead investigator. Australian investigators include Professor Nick Martin from the Queensland Institute of Medical Research (QIMR) at Royal Brisbane Hospital and Professor Tracey Wade, Flinders University (South Australia).
What is ANGI?
This global research aims to identify which genes are involved in the development of anorexia nervosa. ANGI wants to hear from people with current or past anorexia nervosa as well as people with no history of an eating disorder to provide clinical information and blood samples.
- See more at: http://www.nationaleatingdisorders.org/roll-your-sleeve-science-i-can-hardly-wait#sthash.iqO1vKBf.dpuf

Another Approach to Getting Beyond Bulimia - My Own

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

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

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

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

Here's what worked for me:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Generics sometimes don't do the job

As I have shared previously here, I have struggled with maintaining my mental health equilibrium for many years while my family member has been battling an ED.  I've heard the description "situational depression."  I've also heard PTSD.

Three years ago or so, I finally picked up the phone (for me, difficult to do because I am not a pill person) and called the number of a psychiatrist given to me by my excellent therapist.  What finally got me to the phone was a combination of feeling utter despair because my family member was unable to move forward, in fact had returned to self-destructive behaviors following the latest treatment, and I was reading a book to write a review for NEDA.  The book, by the way, was Crave by Cynthia M. Bulik, Ph.D.

I had come across a passage that described dysthymia and suddenly realized that the description of the disorder was how I felt.

If you're curious, you can read about my early steps in the anti-depressant world here.

Anyway, I migrated off the celexa which left me not caring about anything having to do with anything (talk about reducing anxiety!!) and started taking Buproprion, the generic version of Wellbutrin.

All went along fine mostly because, as it turns out, the manufacturer chosen by the dispensary used by my health insurance used a formula that worked for me.  As I've also mentioned earlier, my psychiatrist explained to me that any product by law can range from 85% to 125% efficacy of the non-generic.  And, I'll bet there's a genetics piece to this, too.

Then our medical insurance provider suddenly switched to a new dispensary.  The first go-around with yet a different manufacturer of Buproprion went just fine.  However, in the middle of the summer I received a refill from yet another manufacturer.

I didn't think anything of it until about two weeks later when I began to feel overwhelmed with my old feelings.  After one particularly difficult day (the best description I can come up with is not feeling right in my own skin), I reflected that night on my life and what might be different and the only thing that popped to the surface was the fact that the Buproprion I was taking was different.

So, I called the dispensary and reported this the next morning.  I did get an apology but no help so I called my psychiatrist's office.  He immediately understood the situation having been my doctor now for quite awhile and ordered the non-generic from my local pharmacy which filled it the same day - 30 days worth.  I was scheduled to see him in two weeks and that would give me a chance to see if the change made a difference (given how this med works) or not.

Taking the non-generic sure did make a difference.  I felt so much better!  The shocking thing, of course, is that the non-generic isn't covered by my insurance in spite of the fact that their dispensary sent me a worthless (for my genetic make up) version.  So I went from paying a bit under $50 to a bit less than three times as much for thirty days of my med.

I have also learned that many people have struggled with this same problem with the generic of this medication and have had advocates who've managed to over-ride the system so that they can receive the "real thing."  I am hoping to do this next.  [This failed.  My appeal was denied.]

Meanwhile, I had to spend quite a bit of time on the phone this morning getting the dispensary available to me to over-ride the old calendar renewal date for Buproprion and replace the rx with the new one for Wellbutrin sent in at the end of August by my psychiatrist.

It shouldn't be this difficult!!!!

Marjie Ruth: Are you adapting or changing.......

Another gem from Marjie Ruth.  As usual, at her request for those who might want to re-post this, please include her contact information found at the end of her essay.  Please consider leaving in as well the information about the support group she sponsors in case someone in the Tampa, FL area needs support and reads this.

I raised this topic last week in my meeting. No matter how many Al-Anon meetings I attend, how diligently I work my program, or how many times I repeat/review the Serenity Prayer and other valuable teachings, I still come back to this.......

"Our ability to adapt is amazing. Our ability to change isn't quite as spectacular."

 ~ from The Spellman's Strike Again by Lisa Lutz

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

Our support group will be meeting this Wednesday evening (9/11) at the Hyde Park Counseling Center in Tampa at 7:00pm, as usual. The ABA 12-step group is also continuing to meet at the same time, same place. Yes, it's an historic date that brings back memories just saying the date. 9/11 - where were you when you heard the news of the terrible tragedy taking place? We'll share that with each other at our meeting. And here's a thought: anyone under the age of about 17 has no memory of that day, so for them it will be yet another event to learn about in history class. Perspective changes everything. 

But let's move on to this week's opening quote which is from a very lighthearted, fun book. Actually, this is the 4th book in what has developed into something of a series, and I'd recommend reading the other three first, beginning with The Spellman Files. These books fall into the genre of "Something I Can Read That Absolutely Won't Depress Me & Actually May Make Me Chuckle"...and every few moments spent reading such, ends up being a micro-mini vacation for me. Ahhhh, sweet mindless escape. Are you surprised? You don't actually think I sit around reading books all about eating disorders do you? Heck, no. That would be a short path to depression and insanity. Dealing with a loved one's disorder is punishment enough. 

Now that's not to say that I haven't ever done such reading. I've indulged in my share of psychology text book searching complete with yellow highlighter at the ready. There's a bookshelf above my desk that holds a fair size assortment of books relating to eating disorders, some better than others and at least one that was a huge mistake. I've even spent time in a university library digging into medical books and journals with determination and a zeal to find some answers or at least some meaningful clues. My passion at that point was born out of a raging desire to find a way to get my loved one better, as in "back to normal healthy in mind and body" again. We seemed unable to find any professionals that could help, so I was determined to find the way myself. And there was nothing really wrong with my stumbling efforts to become educated, except that I harbored the delusion that I could make my loved one recover. I have never given up my desire to have my loved one be healthier and happier--that is a mother's plight. What has changed is that I've gradually come to the understanding, that I can't do it for her. 

With this realization comes release: release of my energy being funneled into trying to take control of her disorder; release of the unrealistic desire that there is some magic formula that will make it all better, ie The right treatment program or The right pill; release of the notion that the more I focused on fixing things, then surely my efforts would be rewarded. But don't think that I released such patterns of thinking and behaving easily. Ha...far from it! Please refer to the opening quote which very concisely sums up my journey with ED. Our ability to adapt is amazing. Enabling is a form of adapting to disordered behavior. Our enabling just makes our loved ones more able to indulge their addictions. We adapt our life patterns of thinking and acting to accommodate their addiction. Even upon recognizing this--as the second part of the quote points out, Our ability to change isn't quite as spectacular--changing our behavior is anything but easy. I still find myself slipping back into old thought patterns and needing to regain my footing and even re-examine choices in light of possible enabling that has crept back in. It seems that the only constant in life is change, and yet I'm consistently balking at & even feeling incapable of changing my behavior or thought patterns.

For anyone, change is not easy, either to accept or to achieve. For someone with an addiction, no matter what it is, change is terrifying and seemingly impossible. "They" need to change their addictive ways. And "we" need to change our enabling ones. Both tasks require a great deal of time, determination, and practice. 12 step meetings are there for all of us. Plenty of books provide helpful encouragement and advice. But for each of us, taking good care of ourselves is a critically important point. We need to treat our bodies and our minds in a healthy manner, and one ingredient in doing that is taking the time to rest and recreate. 

Which brings us back to the books by Ms Lutz. When was the last time you treated yourself to some quiet, non-working, non-stressing time? If you had trouble answering that inquiry, then it's been too long! I encourage you to find yourself a good book and a comfortable chair in a quiet spot and work on some recreational therapy for yourself. Put the cell phone on mute, let the computer hibernate, and turn off the guilt. Start small if you need to, but try it for even 5-10 minutes as a first step towards making a change in your own life. Tell you what, if you'll promise to give it a try, so will I. Let me know how it goes!

Marjie Ruth

sruth1@tampabay.rr.com

marjieruth1@gmail.com

727-244-9011 (c)

The Evolving Science of Mind

Back in June, I added three books to my burgeoning bookshelves and went on to  post briefly about one of them titled Brainwashed - the Seductive Appeal of Mindless Neuroscience written by Sally Satel and Scott O. Lilienfeld.

Shortly afterwards, David Brooks of the New York Times wrote a 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." 

Well, I thought, perhaps I should stop pressing for an fMRI for my family member and rely instead on proven testing as provided by a local neuropsychologist who in June spent six hours going through the testing and then interpreting the results to recommend next steps.  He argued that fMRI's do not yet yield enough information to make formal diagnoses to take treatment to the next step.

Now along comes today's (Sunday, September 8, 2013, The Sunday Review, page 12) New York Times with a piece titled "The New Science of Mind" by Eric R. Kandel who is, according to the italicized information, "....a professor of the Mortimer B. Zuckerman Mind Brain Behavior Institute at Columbia, a senior investigator at the Howard Hughes Medical Institute and a recipient of the 2000 Nobel Prize in Physiology or Medicine, and [if that isn't enough] the author of "The Age of Insight: The Quest to Understand the Unconscious in Art, Mind and Brain, From Vienna 1900 to the Present." 

Dr. Kandel provides an in-depth discussion not only on the biological basis and reported potential treatment of depression but also on the broader concept of the Science of Mind.

He points to the outcome of studies by Professor Helen Mayberg of Emory University and others of neural circuitry that has become disordered:  one can treat a person more effectively with either an antidepressant or Cognitive Behavioral Therapy depending on whether or not certain areas of the brain seen in the fMRI are more or less active.

Pause here.........  Really!?!

Kandel goes on to highlight four areas about the biology of mental disorders.  The biology of mental disorders?  So many of us who have family members with one mental disorder or another have been arguing, as Dr. Kandel writes, that "....mental disorders are biological in nature, that people are not responsible for having schizophrenia or depression, and that individual biology and genetics make significant contributions."

Those four areas in this discussion are:
1 - "Neural circuits disturbed by psychiatric disorders are likely to be very complex...."
2 - "....We can identify specific, measurable markers of a mental disorder, and those biomarkers can predict the outcome of two different treatments:  psychotherapy and medication"
3 - "Psychotherapy is a biological treatment, a brain therapy.  It produces lasting, detectable physical changes to our brain, much as learning does."
4 - "The effects of psychotherapy can be studied empirically."

Kandel also incorporates a discussion of the important contributions of genetics - a topic that is being addressed more frequently by many.  In fact a succinct summary of what happens in each of us appears in a New York Times book review by David Quammen about George Johnson's The Cancer Chronicles.  Simply taking a look at mitosis and entropy as explained by Johnson, Mr. Quammen describes what happens within our cells every day.  

So what is the conclusion here?  It's one that continues to be argued about by psychologists, psychiatrists, theoreticians, and philosophers among others.  [From the Kandel piece]:  "....This new science of mind is based on the principle that our mind and our brain are inseparable.... Our mind is a set of operations carried out by our brain.  [And further], the same principle of unity applies to mental disorders."

My conclusion is that we still remain quite far from the day when one can receive effective personalized treatment for their brain disorder whether that brain disorder/malfunction causes, for example, anorexia or bulimia, schizophrenia, depression, obsessive compulsive disorder, anxiety, borderline personality disorder [ a misnomer], and manic-depressive disorder (bipolar disorder) -- or two or more of these at the same time. 

And as a closing caveat I think it's important for family members, myself included, to recognize based on the genetics piece that we are all different, that our brains have evolved as we've grown dependent on our experiences, our genetics, our environment, and as well on the unique brain pruning process that occurs for each of us [will try to find a succinct link to describe this fascinating process].  Consequently what works as treatment for one person or even a few people might not work for others.  The science of all of this is young and each person with a brain disorder must be evaluated independently and perhaps by more than one psychiatrist/psychologist before a course of treatment is adopted.  Likewise, it's important to revisit that treatment and/or therapist  if progress is not being made.

Courage, Hope and Support Groups

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


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

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

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

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

Courage is what it takes to stand up and speak; 

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

~Winston Churchill

Dear Family & Friends of the Eating Disordered;

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

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

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

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

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

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

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

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

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

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

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

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

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

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

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

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

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

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

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

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

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


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

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

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

The problem was that none of us recognised them.

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

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

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

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

But we didn’t know this back then.

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

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

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

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

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

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

And herein lies another problem.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our sons and daughters are truly awesome.

And so are their parents.

281 miles in one day to make a difference

On Wednesday, April 17, 2013, at the same time that others were speaking out about eating disorders across the United States and while the Eating Disorders Coalition was coordinating visits on Capitol Hill, I got up early and drove 281 miles round trip from my home in Tucson to the State Capital in Phoenix and back to share my story as a parent; as a family member.  I was grateful for the opportunity because as another parent put it to me after the briefing, only parents who've been through this "get it."  It's impossible to truly convey the story of this journey in just a few minutes.

The legislative briefing was sponsored by Senator Katie Hobbs of District 24 in Phoenix and coordinated by a group of dedicated people who are part of the Arizona chapter of the  NEDA STAR program.  A huge thank you to Senator Hobbs and to the organizing committee.

Four of us spoke (two of us are therapists, at least two are in recovery, and I'm the parent):  Sam Lample, Dena Cabrera, Jennifer Keyes, and Jennifer Aviles.

NEDA sent out an announcement about the briefing.  Senator Hobbs sent around an interoffice memo to all the Arizona legislators.  This event was an important first step.  A seed was planted.  This event, simply by being advertised although unfortunately not well-attended by the very legislators we hoped to attract (even offering lunch during a brief half hour session), brought eating disorders to the desks of their staff if not to the desks of our representatives themselves.  One of my representatives, Senator Steve Farley, stopped by her office, Senator Hobbs told me, to learn more about today's briefing.

I personally hope that perhaps next year there will be more interest that eventually, as has happened in, for example, Virginia, legislation will be passed for at least school screenings.  I learned that the Phoenix NEDA walk may have attracted as many as 200 people.  The one in Tucson attracted at least 30 to 40 [estimate].  Each step literally brings awareness to a situation that needs attention; to a cluster of brain disorders -- eating disorders -- that are not rare; in fact, the numbers are hidden in many cases because so many people -- girls and boys, men and women -- keep it a secret.

In addition, Senator Hobbs  picked up the (to me) priceless AED Eating Disorders Publication:  Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.  I had brought several copies of this publication to the briefing.  Several were taken.

F.E.A.S.T. and the AED have produced several publications, actually.  You can download and print  information by clicking here.

My intention is to write a letter to all the legislators from Southern Arizona and include a copy of both these publications.  [I find it helps me to write intentions publicly!  I didn't make much progress on this intent because I became ill and my family member's illness took a downturn.]

We all spoke to several points including the need for  managed care from the moment of diagnosis, the need for early diagnosis, the need for screening in schools and colleges/universities, the need for those who manage insurance companies' coverage to understand that treatment as long as necessary is the key to recovery, and to the myths of eating disorders.  The text of my presentation addresses additional issues.

I gave the text of my prepared talk to Senator Hobbs.  My talk was admittedly longer than the five minutes given to me (I timed it at 12 minutes, actually) but then how does one cram 25 years of trying to find help for my loved one and what I've learned so I can educate not only those who can make a difference (legislators) but also parents and family members (who so very much need support, too).  We ran out of time; I was unable to finish but I think I got some significant points across to those present.  I will work on a shortened version and provide a link here, later. 

The big point I want to repeat here is that without the comprehensive managed care of my loved one's Mental Health Team here in Tucson, I do not think she would be alive today to continue to take advantage of treatment that may possibly help her to extricate herself from her eating disorder.  A hospital here in Tucson stepped up with changes in protocol to help my family member address her eating disorder.  If this team and this hospital could do this, so can others.

But, here in Arizona, we need resources -- financial and human.  We need legislation to make a difference!  We need health insurance that provides comprehensive treatment for eating disorders -- brain dysfunction -- on parity with other diseases like cancer, like multiple sclerosis, like autism....

This morning, I learned of a talk by Emma Woolf  that was on the BBC.  She is in recovery from anorexia.  Her talk on her journey plus the latest research on the brain -- again, eating disorders are biologically-based brain disorders -- is so comprehensive, I'm providing a link here.  [I hope those who come across my blog will spend the 15 minutes she takes to talk about her experience and the knowledge she has gained.]

We all have so much work to do.  Following the session, a young woman whose sister recently passed away from anorexia spoke to me at length about her and her family's journey to try to help her sister.  I include this to remind readers that families are part of all of this, too.  We need support and a listening ear, too.  For how else can we keep going?

A huge thank you to all the people who are working on obtaining effective treatment for eating disorders.  A huge thank you to those who are devoting their lives to research on this biologically-based brain disorder.

Together, we can all make a difference.