March 22, 2015

Parent engagement vs. loving detachment? Not the only choices.

It always makes me queasy to appear critical of other parents who have faced the hellish experience of having a son or daughter kidnapped by mental illness. As a parent advocate this is especially sticky  as I know there are plenty of folks out there all too happy to confirm their negative view of parents.

So, actually, I'm not mindlessly supportive of parents. I'm supportive of the parental role in caregiving. I'm supportive of parents doing the best they can, and of throwing off the myths and lack of treatment access that have characterized parents of mentally ill patients.

I reserve the right, and responsibility, to criticize the actions and attitudes of other people who are parents. I respect the right of all parents to their opinions and by that token hold them accountable for what they say as we engage in a mutually respectful debate.

I disagree with the mother who recently recommended that parents "You Can't Save Your Child From Their Anorexia." I think the message of the piece -- that of self-care and acceptance -- are lost in the heartbreakingly damaging title and in the equally heartbreaking conclusion that "none of it seemed to help."

I'm also going to come right out and express my dismay at fellow parents for missing the point of what the mother is actually saying. Her goal was to support other parents. She's saying what we all know is true: that in that time and in that health system she truly was not given the tools and support to help her daughter.

We all know this was true, and still is, in most places. We need to criticize THAT, and make sure to get the urgent news to parents that we CAN AND MUST engage in treatment and that does not mean we will drown with our beloved children. I have compassion for this mother and the choice she was made to make. I'm sorry she is recommending it to others.

I'm also saying out loud that this is not about Family-Based Treatment/Maudsley. By making it about that, parent advocates unknowingly into a dynamic that serves parents poorly and FBT as well. Parents need to be involved in and supported during treatment in every setting, every treatment type, every stage of illness, every diagnosis. Don't let FBT be the reason or the reflexive solution. Don't let people who dismiss FBT throw out the message that parent involvement and food is medicine at the same time.

FBT is not and should not be the only situation where parents are empowered and involved.

I'm heartbroken by the folks who will point at that headline, and the sad experience of this parent, and use it to do terribly harmful things:

  • Reinforce a belief that parents can not and should not help
  • Reinvigorate the idea of "enmeshed parents"
  • Make FBT into a zealot's cul de sac
  • Allow despairing parents to think that they should back off and "save themselves" when their loved ones need them most

Here's what strikes me most in the debate over this article. ED loves it. ED adores it. ED could have written it.

Parents shouldn't have to back off to save themselves. We should be able to be part of the picture in a positive, supportive, and supported way. We should not drown with our kids because both our kids and ourselves get the help we need early and ongoing.

There are times when ED wins the day, or the year, or even a life. Parents don't need to drown no matter what the outcome. The same is true for cancer or for schizophrenia. There are other choices between letting go and drowning. We need to ALL work to help families not have to make either choice.

March 20, 2015

Zero sum advocacy

I was pleased yesterday to hear by Twitter that someone referred to me in a presentation at a conference. Twitter is wildly annoying to me in most ways but really good for the sort of immediacy and community it can offer.

The tweet said:

Peebles cites on importance of parents' awareness of "getting your kid back" as marker of recovery


I was delighted, as it is always nice to know that someone thinks well of what I believe, and say. I tweeted back that I was flattered.

Then, because these things happen in public and everyone is entitled to an opinion, someone said:

a good suggestion but very parent focused outcome. Patient centred outcomes?

Which, of course, this tweeter has the right to say.

But, what is up with the "BUT?"

It reminds me of many such debates where advocacy for any good thing can be taken two ways. One: as a simple positive. Or, as taking away from someone else.

Advocating for breastfeeding gets taken as an attack on those who don't or can't. Advocating for women is seen as not caring about men. Early intervention advice is seen as injury to the chronically ill.

Why is a positive so often seen as taking away from others?

There is no LOSS to patients when parents are part of the equation here. In fact, an empowered and hopeful parent is an important and often pivotal asset to recovery. It would never occur to me to even think that parents looking to full recovery would be in any way NOT a "patient-centred" outcome. It is ABOUT the patient. The patient's best interests are also the family's best interest. But that is the way some people think. It makes me sad. We are all on the same side.

March 17, 2015

Will banning thin models save lives?

Really? Really?
There is a widespread belief that having very thin people be visible to the public will "encourage" "cause" "trigger" or "inspire" eating disorders.

The French government is now weighing in on this topic with a finger wagging "ban" on fashion models being too thin. They're not the first, nor the last, as this is a type of campaign that keeps going on and I need to get this off my chest:

You're making it worse.

And yes, I'm still a feminist.

By tut-tutting and shaming people's bodies -- even emaciated models -- we not only offer the media the opportunity to haul out their most thinspirational images but we embed the concept that people with mental illness are driven mad by desire to look a certain way.

Being a feminist and a parent and a woman with a body to walk around in I have no time or patience for the catwalk at any level.

I also think boxers being publicly weighed in their tighty-whities and gymnasts being bent into permanent childlike shapes and anti-obesity posters in the schools and the fact that entertainers of all sizes except a 2 are considered punchlines are a problem for all of us.

But for the love of Pete, setting the standard for prurient disgust and action at the very tallest and thinnest among us is almost genius if you consider pro-ana a brand. These campaigns banning models could be written by ED, and in fact I often wonder if they are.

Banning "too thin" models may save some model's lives, but that's not what these campaigns are about, and we all know it. This is about shaming bodies for being "too" something, and a massive misrepresentation of mental illness.

I wish eating disorder advocates and activists would stop creating, tagging, liking, retweeting, and tut-tutting over models. If we want the topic to be taken seriously we have to realize that we, ourselves, need to model a view of eating disorders that isn't about thinness, or "banning" people from view.

March 14, 2015

Severe and Enduring Hope

It may be that I'm a parent. Something inherent in the position of caregiver and loved one and family member and lifelong connection, perhaps, that makes it not only impossible but offensive when I hear terms like:

Severe and Enduring Eating Disorders.

This term, mostly used by researchers and clinicians operating in the context of national health systems around the world, is the equivalent of "We've Given Up." It is a sign that the system accepts that recovery is no longer the goal, only a sort of palliative half-life. Families and clinicians switch gears to "quality of life" instead of recovery.

Well, I am a parent and I will never give up. I don't know any parent who will, really. While there is any breath, any chance, any avenue or angle or possibility we don't and should not accept concepts like this.

Treatment may have failed the person, and there may not be any law that compels their care, and the patient may indeed be lost to anosognosia and misery right now but that is not THEIR problem it is ours. It is not their fault or choice it is ours. The responsibility is ours, as a society.

SEED is a term, and there are others like it, for when we have failed to diagnose and intervene early and well, failed to follow up, failed at relapse prevention, failed to address comorbidities, failed to recognize anosognosia, failed to account in our laws and customs and healthcare systems. But the failure is ours as a society, not the patient's. If we are to label anything it is ourselves, not the patient.

The patient may still be suffering but they do not have SEED, we have SEE failure to treat.

Thank you to Lisa at F.E.A.S.T. for her wonderful post on this topic this week. Parents see this differently.

March 11, 2015

Why Do Dieters Gain Their Weight Back?

I repeat myself too much. I repeat myself too much. So let me freshen my usual diatribe by giving you one of the best people out there to explain "why do dieters gain their weight back?"

*and can I just say that one of my more sublime moments was, literally, dancing with Dances With Fat?


March 10, 2015

"Love Your Body" Two campaigns, two completely different meanings, one problem

Today in my email I received an unsolicited junk message promising I will "Love My Body Again" with a scheme for weight loss. I deleted it.

I also received an invitation to join a "Love Your Body" campaign by some lovely folks who think that if we encourage women to love their bodies they will:

1. Love their bodies
2. Not get an eating disorder

The second email was not junk mail -- but it troubled me, too.

1. Body image is really complicated
2. I don't believe loving your body prevents eating disorders

Actually, I believe both of these emails are bad for people with eating disorders. Not equally, but yes, I do.

The first email assumes that I want to lose weight, that doing so will make me happier, and that weight loss is a magic that exists out there even with all the evidence (including these ads) that show there isn't. This message is bad for everyone.

The second email does something worrying, too, though, and sadder still as it comes from those who care about and seek to help eating disorder patients. It implies that those with eating disorders failed to adequately love their bodies and this is why this illness happened. That they could, if they tried, just feel better. That if we all try try try hard enough we will feel great and accept who and what we are and how we look...

There we go: it's still about looks. The spam promised a new look that I could love, the other email promises I can love however I look. It's still a matter of image and appearance.

I deleted the second email, too.

March 6, 2015

Reasons to love the eating disorder parent community

what it looks like when F.E.A.S.T. parents
accompany their friends down the other
side of the sand hill.
I have many personal, and practical, reasons to love the F.E.A.S.T. parent community. Let me give you a few:

1.     The fierce, dogged, unquenchable commitment that parents have to their kids. Is there any other relationship like it? I think people forget, because perhaps it seems so obvious, but it is still miraculous how committed and courageous and resourceful parents can be. We may not be able to fix everything but being in this parent world has offered me a view to parental love. Even in the face of extreme hardship, scary prognoses, lack of support, rejection by and even loss of a child, parents step up. If you met or knew the parents I know you would be staggered by the heroic love.

2.     The selfless, generally invisible nature of parent advocacy. Most of it is done by moms in their dining rooms or in the car between errands. Most of the names are unknown or barely known. They don't call attention to themselves. The parents who are making F.E.A.S.T. and other organizations run do so because they care about making sure other parents are not alone or without information. I know these parents and their deep sense of responsibility and caring.

3.    An emphasis on results. Parent advocacy isn't about making parents feel better. It's about making parents more effective at helping the patient and nurturing the family. The problem is "ED," not the person. Parents are on the side of their loved ones, and that means persistence toward the goal of recovery and a rich and fulfilling life.

4.     The F.E.A.S.T. community, in particular, believes in science. Science is a tool to understanding and analyzing and applying information. When parents put their support behind science they are saying that results matter, that understanding the illness is their responsibility, and that there is hope in reason.

5.     Strange fact: eating disorder parents are great to be with. Do we fight? Yes. Do we trip over one another? Yeah. But this one thing we share makes this wonderful bond that allows for both engagement and vulnerability. Before I fell down the ED rabbit hole I would not have imagined being friends with people on this basis but now I have to say that MOST of my best friends are fellow ED parents, and I'm so glad.

6.     Around the Dinner Table. The longest running conversation about eating disorders and parents: a thriving, fascinating, sometimes silly, completely unique forum.

Hannah, we're cheering!
7.    Hannah. Oh, Hannah, I love you. If you want to understand how special the F.E.A.S.T. community is you need to read Hannah's blog post for F.E.A.S.T. and celebrate her insights and recovery as we all do. A wise woman just as complex and inspiring and personally cared about as all of our kids are -- I am so grateful she let us play any role in getting her life back. Erm, and for her face when she sees adults tap dancing on tables in the night: priceless.

February 27, 2015

What page is this on in the parenting books?

Happy to point to a piece I was asked to write for Social Work License Map blog:

I Had No Idea: It’s Not In The Parenting Books


I distinctly remember my shock and terror when I realized how unprepared I was for the topic of eating disorders. I believe most parents feel the same: this is not something we thought we'd have to learn and we certainly don't realize that our learning curve is more important than any other thing we do for our kids.
  • Learn about this illness.
  • Learn the difference between the good and bad information out there.
  • Act with resolve and courage and humility.
  • Do not expect anyone else to make it easier, pay for it, make our decisions for you, make the best treatment available, or pat you on the back later.

February 5, 2015

Tell your mom

I am so deeply moved by a comment just received. It was on an older post, but where a very frightened and confused young person said her mother "can't know" about her eating disorder. I responded to her, but THIS response is so beautiful and deserves a post of its own:

"tell your mom, she loves you and she doesn't want you to hurt. I wish I understood this when I was your age and got help, now that I have children of my own I understand that there is nothing that would make me stop loving them. Your mom will do anything to help you, don't keep it a secret tell someone all you have to do is reach out. & I think you just did."

She's right. She's exactly right. Tell your mom.

February 4, 2015

A drug treatment for eating disorders: BIG NEWS

Big news day for eating disorders. A drug treatment just approved, alliances between eating disorder concerns, and a new public figure steps forward as a spokesperson. Any of these items are interesting, but all together it's going to all the chatter for a while, I think.

ON DRUGS...

Drug treatments for eating disorders are always going to be controversial. Many sufferers and advocates rightly worry that their problem is being reduced to a simple issue that can be fixed with a pill. I'm sure Vyvanse will be no different. People don't like being told something may be wrong in their brain and pills seem like a cop-out. For people who frame their disorder as "I eat to stuff my feelings when my boss mistreats me" know that the pill isn't going into their boss. Pills also bring up uncomfortable questions of whether eating disorders are psychiatric, whether BED is different from other eating disorders, and the role of experience and psychotherapy.

A drug for one eating disorder gives hope that there will be more coming, for more eating disorders. BED is the most common ED, so this is likely to affect more people quickly but if we've teased out the mechanism for one area of the spectrum this is surely glad tidings for the rest as well.

Pills are not magic beans. No matter what the purpose -- diabetes, the flu, ADHD, cancer -- drugs are blunt instruments with side effects and confounders. They should be used thoughtfully and in context. But medicines also save lives and transform them. Reflexive pro-drug or anti-drug sentiments leave me cold.

I am excited that there's a new tool in the toolbox to consider and look forward to the debate and discussion and what it might lead to for all eating disorders, and for mental illness in general where too little is happening in terms of pharmaceutical research.

But make no mistake: this is going to be controversial and MUCH discussed. Lines will be drawn and  brawls will ensue. It has to happen. We will survive. Let's try to remember we are all on the same side.

ON ALLIANCES...

I am a dreamer. I dream of a world where mental health advocacy is paid for by rainbow unicorns and not sponsorship money. I believe in a world where drug ads can just be what they are and not disguised as public health messages. I fantasize that a drug for BED will not be touted as a weight loss "solution." I dream that alliances between organizations represent a trend toward inclusive collaboration. I dream of world peace and worldwide wifi...

ON SPOKESPEOPLE...

I've groaned plenty about the use of celebrities as spokespeople for causes. I'm not shy to say that I wish ED organizations would find some astronauts and senators instead of the riding the coattails of people famous BECAUSE their mental illness made them compulsive or thin. The lesson there is often "my ED made me rich and famous and here's how you can, too!"

So having Monica Seles as a representative for a drug company selling meds for an eating disorder is of note. She's an athlete, but she's not claiming that her BED enabled her to achieve athletically. She's not "obese," which the public associates with BED. It's an interesting choice: busting myths about mental illness at the same time as reframing the disorder as a treatable medical condition. These are not random allegiances or public service. Money and reputations and alliances are currency. Shire believes, surely rightly, that people with BED will feel more comfortable seeing themselves as like an elite athlete than the usual (inaccurate and harmful) image of Binge Eating Disorder. They are selling their product but we all benefit from breaking that stereotype. I only hope this does not set a new stigma for higher weights even among those with BED.

It's all going U-shaped

We have a problem with exercise. We praise and laud folks for more of it no matter how much. Exercise has to be pretty extreme before we say "whoa... maybe we shouldn't be cheering here."

MORE exercise is always seen as better, healthier, more virtuous, and inspirational. We cheer, we admire, we give prizes.

Evidence that optimal activity levels are actually quite moderate is not only counterintuitive it will piss a lot of people off.

It leads to incredulity, as in "You can, in other words, potentially run too much."

This goes double for the eating disorder world. Openly restricting or bingeing would never be accepted but it is still considered healthy to do pretty much any level of exercise except when acutely ill. Exercise is considered a reward for good health and the more the better. Compulsive exercise is normalized as "about heart health" and for mood management and positive body image. Take out the heart part: if we said that about any other activity or substance it would be....

For many people the idea that optimal health is found in moderation will offend and worry. Moderation is HARD. But we need to start talking about it more.






January 31, 2015

Eating With Your Anorexic reissued

In a fresh start to the new year, I am delighted to announce publication of an updated version of my memoir, Eating With Your Anorexic. It has a new foreword, by Dr. Cindy Bulik, a new cover, and annotations reflecting on the last 10 years of being an eating disorder activist.

In 2004, I knew no one in the eating disorder world. I had no voice but that of one mom both amused and angry at the state of  treatment and research. Each of you, dear mothers and fathers, have that one voice. I've found it both satisfying and terribly frustrating to use mine. It's been an honor to do so alongside so many other fierce and fascinating people: parents and patients and clinicians and researchers.

Also, for those interested in my other work, visit the new website: LMWriter.com where you can read a poem about hair, see me tap dancing, and learn why you shouldn't put me on your gift list.

January 28, 2015

Epigenetics: old parent blaming in new shape?

stretch! stretch!
I note with interest, reminded by a lovely snarker in comments on my last post, the new interest in epigenetics and eating disorders. It's coming up all over the place.

I'm fascinated by epigenetics and the promise that it will yield insights into the underpinnings of eating disorders and human health in general. This is some of the most exciting stuff in medicine right now.

I'm amused by those who were not all that interested in genetics before but have leapfrogged over the well-known 53-83% heritability factor for eating disorders and jumped headfirst into epigenetics in a sort of "see! see! you parents DO cause eating disorders" late embrace of science.

Most people who are interested in the promise of epigenetics are genuinely interested in the role of environment and predisposition. Even the role of parenting. I am.

Some, however, are just unable -- even in denial, maybe? -- to accept that eating disorders are really not a sign of society's ills and parental perfidy. Do some parents suck? Yes. Do some parents of eating disorder patients suck? Duh. But are the symptoms of eating disorders a reflection of a person's  parenting? Not that we know of. So why do we keep going back to THAT aspect of environment, I wonder?

Epigenetics is not the Usual Suspect that you are looking for. There is still no reason to think that an eating disorder diagnosis says ANYTHING about the parents or the sufferer's life. It's just a diagnosis. It's a real brain disorder that ravages lives and families but can be successfully treated by those with genuine and complex interest in the science.

Here's the litmus test. If you didn't believe in genetics and EDs before, you think parents are probably contributing to the causation of most eating disorders, you think eating disorder sufferers are telling us something about society and families, then you may just not be as interested in epigenetics as you think.

January 26, 2015

Really? Really? How far have we come, really?

I have been at this ED advocacy long enough to have seen a lot of people come and go. Early on I assumed I would move on pretty quickly. I honestly and naively believed that the top issues I feel most passionate about could and would be solved if only people stepped up and made them a priority.

But I realize not much has been achieved. I know, I know: we've done so much. But I guess there was far more to be done than I'd considered.

I thought by now that:

  • The link between nourishment and the psychological symptoms of an eating disorder would be obvious and well-incorporated into treatment.
  • Parents would not have to fight to be included in, not to mention not be pathologized, in the treatment of their beloved children.
  • Standards for care based on current science would exist and be followed, and those who did not do so would be under pressure to do so
  • Nature and nurture would be understood as part of causing the illness but not in equal measure
  • Environment would be understood to include nutrition
  • EDs would be seen more like OCDs, where the "environment" part of the picture would influence the presentation but not the core disorder
  • Patients would have a range of options for treatment which would be coordinated and share common principles
We're not there, though. We're still fighting over basic stuff.

Progress is good. No, it's welcome and great. But jeez Louise, it is slow.

January 23, 2015

multi-syllabic way of saying “we don’t know:” Insel

As usual, I cheer all the way through Thomas Insel's thoughtful and meaningful blog posts. His most recent, What Caused This To Happen, is a good example. It is okay to say "we don't know." In fact, when it comes to issues of such import to so many we damned well better start saying "we don't know" when we don't.

rorschach blot
Mental illness treatment is way too comfortable with offering answers to questions that haven't even been properly formed not to mention answered. Our clinical environment is resplendent with answers that have little or no basis.

Most mental health care out there is baseless. It's well-intentioned and deeply believed but absolutely without grounding and the public deserves to know it. If we were to stop paying for and spending time on anything but that which has been clearly established I wonder:

1.    Would the burden of mental illness be much affected?
2.    What would happen to all the resources saved?

The problem with "not knowing" is less the lack of knowledge -- that leads the way to finding solutions -- but the burden of all the treatment that is based on false knowing. There is far too much unaccountable certainty and hubris: being motivated by genuine caring, this is the most dangerous care of all.

yes, this is what you think it is.
I'm not saying that treatment has to be well-researched to be of value. I'm saying that not knowing the difference is a disservice to the point of cruelty because in the end it is the patient who suffers and is blamed for not getting better. We are failing sufferers of mental illness in so many ways.

We need to get comfortable with saying "we don't know." Only then can we see clearly what we do know and make a better map to look for answers.

P.S. in the interest of "keeping it real" must note that while Dr. Insel's blog is up to date the NIMH site is not. The eating disorders page is pre DSM5 and while not terrible is still riddled with thinking of the past about EDs. If it was written more to the tune of the Anxiety Disorders page (also a bit out of date) I would be happier. The NIMH should be cutting edge in all ways. Advocates and activists need our top experts to walk the walk for the public so that we can refer people to them with confidence.




January 19, 2015

be nice, but not too nice.

Most of us have read Martin Luther King, Jr.'s Letter from Birmingham Jail. If you haven't it is well worth it.

What I went looking for today, on MLK Day, was the editorial that King was responding to when he wrote that letter. That letter is terrifying, really, in retrospect. Not because it says anything frightening but because it is meant to seem reasonable and appropriate. These were moderates, allies in their way.

This is a lesson that activists have to learn. Do not judge your cause by its critics. Do not work too hard to make sure people find your message pleasing or even that they understand it. Do not gauge your success by how offended it may make those who resist.

And this: take care not to dilute your beliefs even to allies. One of the most lasting legacies of MLK came out of a letter not to his enemies but to those who were the moderates about his cause.

The guide to activism is the cause. The judge of your methods is your own conscience. Success is not declared by winning people over but by actual change.


January 14, 2015

SOCK IT TO ED!

Socks? What does that have to do with ED?

Who is ED?

Suffice it to say that ED won't like it and you will. Read on.

SOCK IT TO ED.

"United effort for a common goal"

January 13, 2015

Charlotte: One Year anniversary

Charlotte Bevan died one year ago today. Since then her friends have done what she wanted: got on with getting things done to improve life for families facing eating disorders. Specifically, we have supported the Charlotte's Helix project named for her.

Today's Helix blog post reviews the news and accomplishments of the year. Read it (and don't weep). Gratitude and hugs to the marvelous people, especially to Erica Husain and the other wonderful Trustees, to Kings College London's DNA team, and to Cindy Bulik at UNC. And to Charlotte and her marvelous family.

Sometimes people just have to make something happen.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Meade*

*Actually, it wasn't. But everyone thinks it was. It could have been Charlotte, though!

December 18, 2014

a hard stop, Daddy

My dad died. I still find that so shocking to say, even two months later. I struggle to speak of him in the past tense. I have the sense of falling when I allow myself to think it: my dad died.

It was a good death. We all hope for that peaceful scene surrounded by family and deeply loved, and that happened. Daddy died with his beloved wife and his four children around him - and their families, too. The hospital was sincerely, generously, compassionately, and professionally wonderful.

But Daddy is dead and that can't be mended. My mourning is so deep and layered that I have to shelve it daily in a variety of ways. I surround myself with strange relics and wear his watch and sweater. I have embarked on the rest of my life missing my dad.

What Daddy left me is rich and even lively: ongoing debates, grounding values, a chuckling curiosity and wonder. He left me and my brothers a stubborn legacy of what dads are and what they do. I will always, to some degree, be sitting next to him in the front seat of the Chevy, back when kids could sit in the front and slide around without seat belts. His right hand is drumming on the seat back behind my head. When he has to brake quickly he will fling his arm to brace me: always believing that he can protect me from harm. From hard stops and windshields, from bullies and bad decisions, from the laws of physics and time.

It's a hard stop Daddy. A hard, hard stop.

December 12, 2014

"The diet feels good: they feel calmer"

If I could choose the first thing you ever read about eating disorders, this should probably be it.  Many of my friends are talking about it and for good reason.

It's not fair, but some people have a
paradoxical response to hunger.
It is long since time we stopped, as Cynthia Bulik puts it so well: "psychologizing" anorexia nervosa. That goes for all eating disorders, of course. We need to start our thinking about these mental illnesses by seeing the symptoms as neither natural nor willful. What looks like a "desire to control" or a "desire to be thin" is neither. These are biologically driven psychological symptoms with a predictable trigger: energy imbalance.

Imagine a group of sixth grade girls who decide to go on a diet. Or imagine a boys’ wrestling team that decides to engage in some serious crash dieting before weighing in for a meet. Most of the girls and boys find the period of negative energy balance unpleasant and can’t wait to break the diet and go out for pizza and ice cream. For a few, however, they find that they actually feel better under negative energy balance conditions. The diet feels good; they feel calmer. The anxious chatter in their heads diminishes enough to suggest that this might be an escape route from the pervasive discomfort with which they have been living. The positive biological reaction to negative energy balance lures them into continued and escalating dieting in a quest for the paradoxically improved sense of well being that it confers. It is simultaneously seductive and destructive. It is seductive because of the promise of calm and control it holds; it is destructive because it has the power to kill.
from "Negative Energy Balance: A Biological Trap for People Prone to Anorexia Nervosa," by Dr. Cynthia Bulik

We need to start seeing energy imbalance itself as a risky state for certain people, whatever the "reason" it starts.

December 6, 2014

Throwing Starfish interview at Gurze catalog

I was delighted to do an interview about Throwing Starfish in the Gurze Catalog. I love talking about Charlotte Bevan, parenting through an eating disorder diagnosis, and the guilt and fear of caregiving.
Can you offer some wisdom for parents on guilt and fear? 
Guilt is a very self-centered state of mind. It is about us, and when a loved one is ill we need to focus on their needs. Fear, too, is very narrowing. It makes every moment difficult and gives too much influence to the present when we need to be thinking about the bigger picture. Guilt is inevitable, of course, as is fear, but they are indulgences that we cannot afford to spend much energy on if we expect to have the stamina it takes to face this kind of challenge. Guilt and fear undermine the parental stance our kids need us to have, and our partners need us to have. 

It may seem harsh to a parent to be guilted about feeling guilty, I know. It is the most natural emotion in the the world when your beloved child is in harm's way. Parents are MEANT to feel responsible and indeed we can't be good parents unless we stand ready to do that and do it at a moment's notice.

Fear, too, isn't something that is avoidable nor is it dysfunctional. Who isn't FRIGHTENED OUT OF THEIR MIND by having a child develop a life-threatening and mind-altering brain disorder?
All this is why it is so very heroic and PARENTAL when we quell the fear and stuff the guilt and stand in the storm. While fear and guilt are natural, knowing that they are probably your greatest foes is an even higher level of Super Parenting. It's really hard. It's the hardest thing most people will ever do. There's moments when it just isn't possible. But it still has to be done and the harder it is the more critical it is. I am filled with admiration and humbled by parents standing in the storm.

November 21, 2014

Dirty Laundry?

A mother I know has started  The "Dirty Laundry" Project in response to a friend who called it "dirty laundry" to discuss her daughter's eating disorder on Facebook. I am posting this picture as my profile picture all this week to show solidarity and say very clearly that no illness should be treated as shameful or to be hidden. Stigma only serves the purpose of isolation and lack of information. The person who should have been ashamed is the one who thinks talking about illness is something to hide. Hooray for the Dirty Laundry Project and boo hiss to the haters!

November 20, 2014

Research study: Are you a mother who has had an eating disorder?

I believe strongly in the importance of research and I have great hopes for the future when families are better prepared and able to act when it comes to eating disorders.

Researchers in the UK are looking for mothers who have suffered in the past (or currently) with an eating disorder who have a healthy daughter between 11 and 15. Travel costs are covered if you decide to participate.

If this describes you, please consider joining the study being conducted by the UCL Institute of Child Health? Research is so important in understanding and better treating eating disorders. If we could learn more about those at risk before they become ill it could lead to advances in treatment and even prevention.


BREDS (Brain in high risk for eating disorders study) 

We are currently recruiting mothers who have had an eating disorder in the past or have one now, and who have a healthy daughter between the ages of 11 and 15. 

Research has started to study whether the way someone thinks and brain characteristics are linked to the development of an eating disorder, however, we still don’t know if this differences were there before the eating disorder; or if they are a consequence of the disorder. 

We are currently recruiting for a study to understand why young people develop an eating disorder. The purpose of this study is to look at the brain structure and the way of thinking of healthy adolescents who have a first degree relative with an eating disorder. This study will help us figure out if these healthy adolescents have a similar way of thinking and brain characteristics to those shown in patients with eating disorders. If this is the case we might be able to understand what brain characteristics increase the risk for eating disorders. 

What’s involved? - Computerised brain games and IQ test- Questionnaires- Saliva sample Inclusion criteria - One half-hour MRI scan

You are eligible to take part if you:- Have a healthy daughter between the ages of 11 and 15.- Have had an eating disorder at any point in the past, or have one currently this could include Anorexia Nerovsa (AN), Bulimia Nervosa (BN), Eating Disorder Not Otherwise Specified (EDNOS), or Binge Eating Disorder  

We are also recruiting control participants who have never had any mental health disorder and have a healthy daughter between the ages of 11 and 15. 

Compensation You will be reimbursed for travel costs and your daughter will receive a £20 voucher as a token of our appreciation. 

Contact - Tel: 02079052166   - m.martinez-barona@ucl.ac.uk


The study was approved by UCL Ethics Committee (5487/001) and Dr Micali is the principal investigator.

Click here for more details.

November 18, 2014

The picture wall is growing: where's your pic?

I'm having a great time every morning checking out the picture board at F.E.A.S.T. - every day there are new entries and they move around so I love seeing my family in different constellations with other families.



Are you on the board yet???



Fund Drive Updates - Families Empowered and Supporting Treatment of Eating Disorders

November 11, 2014

Principles and Scenarios, and a Bungee Jump

Staying calm and consistent while caring for a loved one suffering from an eating disorder, that is the question. I've spent a decade being shouty about the WHY and the WHAT parents can do. I've been more cautious about the HOW. The truth is: parents want the HOW. NOW.

So, Eva Musby, another parent writer, has rolled out the HOW that so many families are begging for in a new book. She does so with wonderful analogies, references, and some mad animation skills. Check out her video:




In a perfect example of how Musby has thought through what you, the parent, need and are going to ask, she's worked out all the formats you might want to access the book!

Here's what I like best. I have observed, over the years, a growing knowledge base in the parent community. Parents are sharing what they've experienced and tools they've stumbled on and sharing them with others. There is no formula for all, no recipe that will work for more than one family - but what a parent does need is a pantry to walk into and read ingredients and pick up ladles and pans - this book is like that pantry. Dip in anywhere -- and there is a lot here - and find a concept or a tool you would probably only stumble over long after you needed it.

Thank you, Eva, for taking your experience and listening to others -- to other families, to the professionals, to the literature.

And thank you so much for the Bungee Jump analogy!


November 7, 2014

I hate fundraising. But I hate ED more.

When a group of parents around the world started F.E.A.S.T., the first internatonal group OF and SUPPORTING parents of ED patients, we didn’t just want to copy what others were doing. We wanted to change the landscape of what families find and how they respond to these life-draining and life-threatening disorders.
We believed two things were essential:

Focus on what parents can DO.
Follow the science.

We knew we wanted to be a unique voice and that we might stir controversy. For that, we needed financial independence. You see, most advocacy is funded by sponsorships by those selling services to families. This is not to say that providers would tell us what to do, or that what they do was wrong, but an acknowledgement that financial independence would leave us free to focus on the message and not keeping sponsors happy.

So, being financially independent means F.E.A.S.T. depends on the very people we represent: families. We depend on contributions from the F.E.A.S.T. community to do the work we do. Those contributions are not just how we pay the bills for our services but how we know what we do matters. Since 2007 parents and other supporters have been donating what they can to F.E.A.S.T. and by doing so they make the Around the Dinner Table forum possible, they make sure that there are parents represented at eating disorder events, they fund the written materials that families bring to their schools and doctors, and those kind donors make sure that the lonely mother at her computer in the middle of the night finds a place that assures her that it is not her fault and that she can, indeed, get her child back.

F.E.A.S.T. is independent but also frugal. We don’t have an office or paid staff. Everyone at F.E.A.S.T. is a volunteer working from a kitchen table or their laptop in the den. We don’t spend donations on stationery or pens: we spend it on supplying services and providing information.

Independence means F.E.A.S.T. is focused on our mission and not cultivating donors.

I hate fundraising, myself. But independence has its cost. If we don’t want to have to worry whether Hospital One wishes we wouldn’t talk about evidence-based outcomes, or worry that parents at one of our conferences will feel more trusting of XYZ Clinic because they paid for a conference breakfast then we can’t play the sponsor game and we have to operate on less and get it from our own members.

Notably, we rarely ask folks for money. We don’t pepper our members with fundraising appeals, nor do we make donations a condition of membership. We believe parents and caregivers have a great deal on their minds and don’t need to see a fundraising message every time they hear from us.

But F.E.A.S.T. isn’t made of fairy dust and we do need to get donations to continue our work.

Donating to F.E.A.S.T. in any amount is more than a money thing. It’s a vote of support for the parent perspective, and for good science. It’s paying it forward to the parents who will need F.E.A.S.T. for the first time tomorrow morning, or next month, or next year. If what we do matters to you make sure it is there for others. Be part of making the world a better place for families facing eating disorders.