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.