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.

Activism for Insurance Reform

The Eating Disorders Coalition and the National Eating Disorders Association (among others) are actively encouraging people to become involved in a national lobbying effort to reach state and national legislators who have the power to introduce legislation about Eating Disorders.

As many of us parents know, it's difficult if not impossible to obtain adequate insurance coverage for treatment of eating disorders, a process toward recovery that can take 5-7 years if addressed early enough.  If not identified/diagnosed and then treated quickly and effectively, eating disorders can and do simmer along for years, disrupting the lives of those affected.

From the NEDA Website:

"Eating disorders are serious, potentially life-threatening conditions that affect a person’s emotional and physical health. They are not just a “fad” or a “phase.” People do not just “catch” an eating disorder for a period of time.  They are real, complex, and devastating conditions that can have serious consequences for health, productivity, and relationships. 
People struggling with an eating disorder need to seek professional help.  The earlier a person with an eating disorder seeks treatment, the greater the likelihood of physical and emotional recovery."

Recently, Leah Dean of F.E.A.S.T. wrote a piece outlining how to be an effective advocate drawing upon a template developed by the AIDS Advocacy Movement.  You can find her post here. 

Just this week another post appeared in the blog of the law firm Kantor and Kantor of California, a firm that has successfully represented families whose loved ones have insurance policies but the insurance companies involved have been reluctant to provide adequate coverage.  This situation is changing!

The blog post describes the work by Annie Seal of Missouri who advocates for insurance reform and who, through very hard work, obtained support for her work from the Missouri legislature.  Here is the story of how she accomplished her goals.  The Missouri site provides a draft of a letter of support for those who wish to advocate for change within their own state.

And, with great success.  Missouri SB 145 has been passed into law!

These two women have provided a template for change.  We can make a difference!!