December 30, 2008

Bailing out the boat

Thoughts on food, and the rest of the story.

I consider any eating disorder treatment that does not include immediate, consistent, and retained full nutrition to be, frankly, immoral. If it were my choice, it should be actionable malpractice to treat a patient - or tolerate other clinicians who treat patients - without that as a bottom line EVERY DAY after diagnosis. In the six years since my daughter was diagnosed I've grown stronger and stronger in this belief - because the science is consistently clear: lack of consistent full nutrition both causes and sustains eating disorder thoughts and behaviors in those with that genetic predisposition.


There is a delay, even after full medical restoration and vigor, before full psychological, cognitive, and emotional recovery. Reaching target weight is necessary, but only the first step. Then begins the work of holding there long enough for brain damage to repair. 6-12 months by most estimates. And learning tolerance for that condition during real life and real stresses.

But no less important than the above: food is not enough.

People who develop eating disorders almost always suffered previously from anxiety, depression, OCD, or other symptoms, and will do even after recovery. Often sub-clinical, these issues are helped but often not fixed by regaining brain health through nutrition.

Getting someone up to target weight and then going back to normal life is not treatment: it is torture and doomed to repeated failure.

Even if there were no pre-illness issues, the patient has to learn where the fault lines are and get strong in avoiding them: dieting, unrelieved stress, unhealthy living environment.

I emphasize the food part because the majority of clinicians still considers it unimportant or incidental until there is observable damage. Without the food part, all else is futile and cruel. But only food? That just bails out the boat - you've still got to patch it.

December 29, 2008

Athletics masking an eating disorder

My friend, Dr. Julie O'Toole, sent me this article a few days ago. It isn't new, and I've blogged about this athlete's story before, but hadn't read this wonderfully written and comprehensive - and harrowing - article. I'd like every parent with an athlete to read it - whether your child has an eating disorder or not.

When Being Varsity-Fit Masks an Eating Disorder

Parents unfamiliar with eating disorders cannot be expected to know how common EDs are among athletes, or to know that coaches aren't trained nor are do they feel empowered to intervene. We are all so used to seeing "athlete" as a synonym for healthy, and we assume that being sick means doing poorly at the sport.

This is our job as a society: spread the word.

December 28, 2008

Does (mom's) size matter?

Did the title above make you flinch? This is a touchy subject.

If mom is thin... or fat... dad is athletic... mom is in a running club... imagine how these benign facts take on meaning all of a sudden when Junior develops a mental condition that seems to be about weight and size. Did mom's size scare her daughter? Did Dad being so thin create a double standard? Family ice-cream night, the Weight Watcher account, the Diet Coke t-shirt - is it important or coincidence?

I have observed that EDs hit families with all sizes of parents. And I don't believe EDs really have much to do with a desire to be thin - so I'm not buying that facile causation myth.

But wow: I am never as aware of what I'm eating as when I'm being looked at as an anorexic's mother. I wasn't all that weird about food before our daughter's illness, but I went through a really bizarre time where I was sure everyone was staring judgementally at my plate.

I'm over that now - but my own relationship with eating and my weight went through some tough times in the years since our daughter's diagnosis. I over-ate during re feeding and beyond in cheer leading mode: there are no bad foods, food is good, don't be afraid! I lost touch with hunger and fullness. I began to hate food and everything associated with it. I grew very body conscious. I even weighed losing or gaining weight to promote my daughter's recovery - and thought of arguments for both sides. I caught myself wondering as an ED parent advocate if I hurt the reputation of parents if I'm too round or not round enough. I wondered if ordering a salad at an ED event will raise eyebrows - but then again, what does a fully-loaded burger say? If I turned down dessert am I restricting? If I ate dessert just to be social was I failing some test?

I hear this sort of thing from lots of parents - moms in particular.

It has taken years to really feel beyond it. I'm back to what I think is my normal state: don't think all that much about food or my body size. I forget to give a fig about what people think of my plate. I don't notice other people's shapes or what they eat unless pointed out, and anyone who does point these things out suffers a blistering lecture in response. I've come to be a strong believer in the Health at Every Size movement and the Intuitive Eating paradigm and follow Ellyn Satter's Division of Responsibility with our family meals. But none of that came naturally, or at once.

If you are a parent struggling with these things, I want to reassure you that it seems to be very common. And from personal experience I can say it worked out over time, and I learned a lot about myself and our society.

Does size matter? My answer is no. But I doubt any of us get out of this experience without wondering about it a bit, and some humbling struggle.

December 27, 2008

The Gift of FBT

Joy Jacobs was reading my mind, clearly, when she wrote: The Gift of FBT.

Last night I had a long talk with a father whose daughter is in her early 20s. They've been through residential and outpatient care. They've had psychiatric hospitalizations and years of worry and work and pain.

But today was the first time they learned about the Minnesota Starvation Study, nutrition as a treatment in itself, and the Family-Based Maudsley approach. I struggle with my fury that this family has not until now been offered tools and choices they deserved despite years of asking.

They are considering FBT now. I shared the stories of several families with adult children who had success with a home-based, nutrition first, parent-coached approach. There is a real need for families with older patients to get the support they need in trying FBT. I'm weary of families not even given the choice. I'm frustrated with how many families I speak with who say now "if only I had known."

The wonderful dad asked me "is this a tough love kind of thing?" and I gave a longish answer - what I plan to tell him next time is this: "It is a LOVE kind of thing, period."

December 26, 2008

How F.E.A.S.T. tries to make the Internet a safer place for parents

As the first year of F.E.A.S.T. winds down, I am preparing reports for our members, Advisory Panel, and Parent Council and reviewing 2008's accomplishments.

Our Media Outreach project is one of my favorite aspects of the organization. As a heavy Internet user, I am painfully aware of how much poor and antiquated information parents encounter. This bad information leads families to poor treatment, poor follow-up, and poor outcomes. We know enough about eating disorders to do a much better job. We just aren't getting that information to the public so they can start to ask good questions of clinicians.

The Outreach Project volunteers are looking for your help. Read what they have done, are working on, and what they need from you. Help make the Internet a safer place for parents seeking information.

December 25, 2008

"Full power, Rudolph!"


"Hi, Laura ... Trivial as it may seem to send email specifically to say "I watched Rudolph the red-nosed reindeer tonight and thought of FEAST ...," I'm writing just to say I thought of you and other parents at the FEAST forum while watching this Christmas classic with my kids.

When Santa says, "Full power, Rudolph!" as the sleigh heads into the foggy Christmas Eve, my brain immediately jumped to the board's commonly repeated phrase: "Full nutrition!"

And, indeed, without "full power," Rudolph wouldn't have been able to do his job/lead his team ... Santa wouldn't have been able to deliver his toys ... and Christmas wouldn't have happened that year. Seems like that's at the heart of what you all advocate with FBT ... nothing else happens until basic needs have been met. And beyond that, without today's full power, there may be no holiday to celebrate.

Wishing you and your family the best this season!

"Anon Mom"

December 21, 2008

What on earth is a 'tree stand?'

I spent four hours yesterday in a chair 18 feet up a tree.

I was there to observe a deer hunt, part of some research I'm doing for a book. My friend, Dave, and his son Andrew, were kind enough to have me along, and gave me a tree stand of my own. I saw three squirrel, one red fox, a nuthatch, and at least four deer. All of us survived the day, which was good for the deer but unfortunate for the hunters and a plot point of my manuscript. (Maxwell may not be dressing out a deer after all; he needs me to see, hear, smell, and feel under my hands what he would.)

Sitting in a tree stand exposed to 40 degree air with tree bark for a backrest for four hours without moving taught me a little about hunting and somewhat more about myself. It was profoundly cold. I feared falling out of the stand. I feared my stiff feet wouldn't make it safely back down the ladder. I feared doing something to ruin the hunt for the four very focused men up trees in the surrounding woods. And I wouldn't trade it: it was a great experience.

The cold, though, was the worst. Profound cold that all the camo layers and two chemical heat packets stopped protecting my limbs against at about hour three. Still and in silence, with little visual distraction, it required all manner of mental games to cope with the unrelenting consciousness of cold.

Naturally, I thought a good bit about the thread on Around The Dinner Table about patients struggling to retain heat while underweight. I remembered the cold my daughter felt during the worst of her illness. Imagine: cold that comes out from the bones, and from which there is little respite. Humans are built to work at a rather narrow range of temperature, and we work at homeostasis.

I remember - remotely - growing up and walking home from school in the 70s in pre-Polartec Massachusetts winters. Yesterday was a small reminder of what cold really feels like, and how it feels to be cold without relief.

Thank you again, Dave! And Andrew. You guys rock. And I had a blast - really!

December 19, 2008

"We can help him"

I can't get over how moving this mother's words are:

"My s(on) needs me to help him. We can help him."

That is the essence of what a parent has to know. That they have not chosen to feel or act eating disordered, and the illness will harm them irreparably if we don't intervene. We do not have to be helpless or watch in silent pain as they struggle. We CAN help our children.

All else is the details.

December 18, 2008

Catching up

All is well at Grandmother's bedside. Family comes and goes, and I am home again in Virginia. Exhausted, but grateful.

December 14, 2008

Responsible parties in room 5717

My grandmother has had a minor stroke. At 93, it isn't shocking, but for this particular woman it is always jarring to see her at rest.

Instead of the grim end-of-story scene we all feared (my mother rushed back from a trip to Beijing, an uncle in Texas risked losing a job to get here, another uncle's whole family came overnight in a fogstorm, and I caught a red-eye and came straight from the airport) ... Mrs. C is holding court from her hospital bed, children and grandchildren and grandcousins and medical staff in her thrall. I am permanently bent from curling up to sleep at the foot of the bed, because doing that at the age of 47 is another thing entirely than at ten. Grandmother is doing fine, and it is family reunion time in room 5717.

Now, you can expect ME to find some way to relate this whole experience to my eating disorder interest, right?

I've spent three days shaking the hands of countless hospital staff and doctors and specialists. (Grandmother asks each one their names, and remembers them from then on. She waves at each person passing by as if we are all colleagues in passing, and they are growing used to greeting her in kind) I'm just a random relative, but I notice that most people encountering Grandmother are perfectly happy to treat me as an authority on her medical details. They show and tell all sorts of intimate details, trust me on history and medicines, and let me sign her paperwork on the strength of "I'm her granddaughter."

The reason this interests me this week is because before this mad tear out of town (thanks to my husband and friends for juggling everything to make this happen), I was working with our Advisors and Parent Council on a FEAST policy statement on limits on parent visits and information sharing during hospitalization for eating disorder.

The contrast is stark: Why DON'T family members of eating disorder patients get as much communication, consideration, and a little pullout couch by the bed as I've had these past few days? Why is my grandmother treated as part of a community of caring relatives, and her cast of characters trusted with information and respect - when the norm with eating disorder hospitalization is separation and layers of information-protection.

That is my dream: that eating disorder patients be treated with the tenderness and professionalism and respect they need and deserve, and as an unremovable part of whatever motley crowd of relatives they may have. That parents not struggle to be included, informed, and considered the most responsible parties in a patient's life.

Conditioned Response

Brain Blogger has an interesting review of Conditioned Response - "Psychotherapy is only a form of learning"

December 13, 2008

Maybe we need to start stigmatizing for not having a mental disorder?

I note, among my parenting peers, a sort of prissy superstition about kids and mental illness in the form of "if we don't speak it aloud it won't happen to us, and if we listen to YOU speaking it aloud that's like saying it too."

Individually and collectively we're horrified by it. If it happens in our own families we hide it, and therefore rarely hear other parents discussing it about their own children. Until, of course, it happens to us.

But it is obviously NORMAL if Half of Young Adults Have Mental Disorder.

I know, I know: big Pharma is pushing this so everyone will buy pills, everyone's a victim, everyone wants easy answers, labelling is a crutch, what happened to discipline and self-determination...


Humbug. Mental illness has always been part of the fabric of being human. Shame and stigma around the outer edges of mental behavior - as well as our tendency to mistake certain manias and obsessions for virtues - keep us from seeing just how normal it is for the brain to wobble.


It's an organ. It interacts, more than any other physical system, with the world. It learns, it changes, it responds to the society and circumstances of its time and place. Its vulnerabilities are also its strengths: we humans often respond to the world in miraculous ways. We create art, we shelter babies, we invent unthought of things, we stare down dangers - these require a nimble mind. A risk-taking and highly responsive mind also at risk for malfunction, just as complex machinery fails more often than a simpler tool.


But recovery, too, this is part of the picture. Some mental illnesses can remit completely (eating disorders and depression among them), sometimes through retraining the brain and living a lifestyle to suit one's temperament, there's relief. Even schizophrenia can be ameliorated and eventually remit later in life. Mental illness isn't a life sentence of misery and being normal ain't all it's cracked up to be.

December 11, 2008

Feedback on providers

Parents often go to the FEAST site, and the Around the Dinner Table forum, and write me personally to ask about or tell me about their experiences with treatment providers. I have long sought a tool to connect searching parents with those parents with experience to share.

Well, Google is helping make that happen.

Google allows any user to create a map of existing places and businesses, and allows all users to write reviews. FEAST now features a map of any provider who signs onto FEAST's principles, and an easy way for anyone on the Internet to read and write reviews. Like Amazon and other "user-generated" reviews, opinions will tend toward the extremes. And of course no one should take any review as the sole impression of a provider. I would also ask parents to be constructive and thoughtful in their own written reviews. The reviews at Google are visible to the whole world and are written by anyone as well - this is not a service of FEAST nor do we have any control or oversight.

Google also, with the review function, offers links to any links about the provider and other reviews sites on the web as well as any information the provider has submitted to Google. Researching treatment options is one of the most important parts of supporting our loved ones to a full recovery - we can use all the tools available!

December 10, 2008

"we could have spared her years of suffering"

The calendar doesn't matter..."

College can wait. Think about this phase with the same urgency that you have during refeeding. It's easy to understand how tired you feel but handing back control can't be rushed.

Our d had several relapses. Actually, I should correct that-she was never given a chance to fully recover before we did FBT with her. I can't emphasize enough how important it is for your d to fully recover and sustain at healthy weight for a year, to really overcome her ed.

We learned everything the hard way. Our d would gain enough weight to be "out of danger" and then we would breathe a sigh of relief, thinking she could go on her way again. She would insist that she was fine, professionals would advise us that she needed our trust and to "learn how to do this for herself". Then she would loose weight again. Each time this cycle repeated, she would go to lower and lower weights.

Our d's struggle went on for over 5 years. If we had understood the importance of getting her to healthy weight and keeping her there for a full year, we could have spared her years of suffering.

This probably isn't easy for you to hear, and it won't be easy for your d either. But the alternative is dragging this out for far longer, compromising her prognosis for full recovery and the life she deserves."

(Emphasis mine. Wisdom: hers.)

December 9, 2008

Food is to insight as insight is to....

I'm having an interesting conversation with a clinician.

I told her that I think of active restriction/bingeing/purging as I would shooting heroin: therapy is inappropriate while high. She found that a provocative idea.

I said I wished therapists would refuse to engage in ongoing therapy with a patient who is actively 'using,' and she felt that was wrong: that very useful therapy can go on without weight restoration.

This is probably a matter of emphasis between us. She's a therapist whose tools are rapport and building insight in patients.

I'm a parent. I saw first-hand that our daughter displayed lots of insight even when entirely unable to sustain herself nutritionally. Insight didn't help her. And I saw how full nutrition alone brought her reasoning to a place where her insights were in line with her actions - and to a place she engaged quite successfully in therapy.

I'm curious: parents, do you find it provocative to suggest that therapy in the absence of nutritional rehabilitation is like doing therapy while high?

What role did insight have in your loved one's recovery?

December 8, 2008

Good blog bits

Some recent blog topics I found interesting:

Grey Thinking was talking about Therapists with Eating Disorders and Frozen Oranges added her thoughts as well.

Carrie wrote two posts I'm eager to share: What I would love to see written about EDs, and she asks What's wrong with science?

Another one of my favorite vocab words got some play over at MindBlog: alexithymia.

December 7, 2008

'I am actually afraid of myself'

Most eating disorder patients can't come out and say it - it is a symptom of the way the illness mangles the brain.

But some do:
'I am actually afraid of myself': Teen pleads for more services

And even then, society often proves unable to hear.

December 6, 2008

We SO need this with mental health care

The world of mental health care is a mess. While excellent clinicians save lives and do great work, legions of amateurs do little, and some commit active damage. And for most people in the world, there IS no mental health care available.

Availability, affordability, and incoherence on what works make it all too rare when a patient gets what they need.

(Of course, this is also true for all healthcare. In the US, where we tend to think we do things bigger and better, what we actually have is chaotic availability for very high cost of highly variable results.)

We'd all love a world where skilled clinicians were available in reasonable supply for affordable access... but short of that I'll fantasize of a world where Via E-Mail, Charity Links Sick People in Distant Areas to Specialists is being used to connect the very best science of eating disorders with the patients wherever they are.

December 5, 2008

Piece of your mind

We've all written a "why I blog" post, or we put it on our sidebars, but this piece, by Andrew Sullivan: Why I Blog says more about the motivations and rewards of this activity than anything.

Our interests may differ, but we all realize the

"wise panic that can paralyze a writer—the fear that he will be exposed, undone, humiliated—is not available to a blogger."

Sullivan also nails the relationship to the anonymous readers turned correspondents:

"These friends, moreover, are an integral part of the blog itself—sources of solace, company, provocation, hurt, and correction."

I've been blogging for almost exactly two years now, and although it is about me, it is meaningless if it is not also about you. The relationships and interrelationships mean a great deal to me. The ability to "leave a trail of bread crumbs back to reality" for fellow parents struggling with an ill loved one is an honor and a pleasure - but of course also harrowing:

“… readers responded. E-mail seemed to unleash their inner beast. They were more brutal than any editor, more persnickety than any copy editor, and more emotionally unstable than any colleague.

Again, it’s hard to overrate how different this is. Writers can be sensitive, vain souls, requiring gentle nurturing from editors, and oddly susceptible to the blows delivered by reviewers. They survive, for the most part, but the thinness of their skins is legendary….”


Just being a writer isn't enough. One must read one's readers as well. Thank you for reading, for giving me clues and links, and forgiving me my bouts of hubris and fury.

December 4, 2008

Out of sight and mind

Some people don't see their own body as you see it: Introduction to Alien Limb Syndrome. They may also perceive physical sensations as emotional ones.

And it seems that all of us have malleable self-perception: Illusion gives people out-of-body experience, in which "the brain builds its sense of which body belongs to it less from signals it receives from the muscles, joints and skin, and more according to what it sees."

So if what we see is based on brain health, and what we believe about our bodies in space can be altered by what we "see...."

December 3, 2008

Information goulash

I've gotten backed up - lots of things I've been wanting to share. So I'm double-posting today and listing a bunch of stuff together:

On being wrong

This passage, from The undead, is about the growing realization that we've misdiagnosed and failed two out of five patients believed to be unconscious. I find it a stark illustration of how we can cruelly remain more concerned about admitting the mistake than motivated to know the truth. Remember as you read it that there is a PERSON in there who doctors may now determine is aware and trapped inside:

“Imagine the case of this family who, after several years, want to finally grieve and get their lives back...Their hospital visits have dwindled to once every three months. They’ve made their decision to apply for withdrawal of feeding and allow Mrs K to die. What if a scan now finds a trace of minimal awareness? The withdrawal will obviously be halted, there will be new feelings of guilt to be dealt with, and the family’s life is back on hold. The island of awareness might be temporary or insignificant, and Mrs K might still fail to interact.”

My work requires me to ask people to consider that they were wrong.

When I tell a clinician that I believe Family-Based Maudsley treatment should be the first line of treatment for most patients, I am not just sharing my enthusiasm for a new approach:

I'm telling them they were wrong. I am not just asking them to add something to their services, I am calling into question the outcomes of countless patients they cared about. Some of these patients may have died. Others live in chronic disability and distress.

The resistance to FBT/Maudsley isn't only skepticism about evidence-based practice. It is also resistance to being blamed - and frankly, that's something parents in the ED world know something about.

But the real casualties of getting stuck in blame here, in both cases, are the patients - they can't really speak up for themselves.

December 2, 2008

Knowing when to stop... telling parents to relax

"Self-care is not a selfish act" is true, but not sufficient.

Not for parents. And not during a crisis.

Let me explain why I believe parents - mothers especially - chafe at being told to "relax" and "do something for yourself." What we hear is: "Whatever you are doing right now is neither needed nor helpful." Which is odd, because we are generally thinking "WHY ISN'T ANYONE ELSE DOING ANYTHING?" Because the things we are doing (worrying, researching, weeping, talking, planning, escalating the issue with clinicians and other family members...) are normal and healthy parenting reactions to a situation threatening our most precious concern: our children.

Self-care is necessary to long-term care giving. But having a seriously ill or constantly threatened child is quite appropriately a constant state of alert. It is like juggling balls of flame in a paper house, and we can neither drop them nor can we be confident anyone else will juggle them with the same urgency we can.

What I needed to hear when we were in the muck of our daughter's illness was: "Of course you are horribly stressed." "You are a loving mother, and you are afraid for your child's life and future." "You've been carrying this for a long time and you are doing a great job."

What I needed in order to take a bubble bath or walk around the block was someone else to take the juggling as deadly serious as I do and show me they could do it for me for short periods - but never to imply that what I was doing was unnecessary or that anyone could do it with the same investment as I had.

What I wanted was acknowledgement of the agony of it, not to be told it didn't deserve that feeling.

Yes, parents: pace yourselves: this will take everything you've got and over a long period of time. It's worth it and you are uniquely qualified. One of your jobs, in supporting your child, is surrounding yourself with people who protect your self-care opportunities not because you should not be worried and stressed, but because of course you are.

December 1, 2008

Unhappy with studies

Unhappy People Watch More TV interests me. I'm surprised at how little questioning there is to whether TV makes people unhappy, or being unhappy makes the TV more attractive, or when unhappy people watch TV they feel more dispirited.

It is the same question I have about media and eating disorders. There is a headlong rush to hold the media responsible for promoting unrealistic images and leading vulnerable teens to lower self-esteem and body images which put them at risk for an eating disorder.

But my observation is that my daughter was fixated on the skinny images because of her illness - not the other way around. And living in that soup of images also fed her illness. Ridding her life of those images - to the degree any 20-year old in our culture CAN - was part of her choosing to surround herself with a pleasant and nurturing environment.

I believe we've romanticized the past and villainized the present. When I was a kid, the media was a monoculture of slim, European, polished people. Men were stereotypically manly or ridiculous buffoons. Women were either June Cleaver or Charo. The range of body types and attractive faces for leading men and women was extremely narrow. Being black or a tall woman or a fat anybody meant being comic or or a stereotyped character - not a role model. This did hurt the self-esteem of those not fitting the standard. It did allow some people to feel unreasoning superiority over others.

It could be argued that what has changed is the belief that anybody who chooses to can be a supermodel/supermom/Olympian/Brad Pitt, but I seem to remember those promises being made to us before: hair straighteners and boob builders and skin bleachers and "I was a 90 pound weakling..."

Environments do matter. I don't believe you can get a mental illness from TV, or an eating disorder from reading Glamour - but I think surrounding ourselves and our children with wholesome messages and modelling balanced lives is what loving parenting is all about. If only because noticing a loved one falling into too much of any behavior or interest is a natural function of family and community. And the danger of our culture is that we, ourselves, get confused about what is normal.

November 30, 2008

Join me for lunch on Monday?

In the first of what will, I hope, be a series of online radio shows, I invite you to join me online tomorrow** for:

Lunch with F.E.A.S.T. on BlogTalkRadio.

Tune in at noon, New York Time, to help us test run this format. We'll take questions, talk about FEAST, and eat our lunch (or breakfast or dinner or snack depending on where you are). It is "potluck" so bring something yummy.

Future shows will feature some of F.E.A.S.T.'s Advisory Panel, Parent Council, and experts in the ED world. We also hope to offer support chats at various times of day so families around the world can join us at convenient times.

This is Internet radio, so you can listen online in real time. It will also be archived for download later to listen at your leisure. If you would like to call in to join the conversation, use the number on the website. It is a toll call to the New York region - but you can also call using your computer: follow the instructions on the site. My advice: use a microphone and earphones if you have them - your audio and voice will be clearer.

**Monday my time will already be Tuesday for my friends on the other side of the earth.

November 25, 2008

Refrigerator Mothers, Warrior Mothers: One and the Same?

One of my favorite bloggers, Autism Vox, has written a post that will resonate, I believe, with any parent in the modern world.

It will have special meaning for those parenting children with illnesses misunderstood by society and invisible to society in all the important ways.

For parents who live with the "anorexigenic" stigma every day, I'm sure Kristina won't mind if you read it twice: once as she's written it, and second replacing "autism" with eating disorders.

The links are excellent, the topic is timely, and the analysis: fearless:

Refrigerator Mothers, Warrior Mothers: One and the Same?

November 24, 2008

health takes a holiday

I understand why PATIENTS ask for a "free day" when holidays come around: a break from the pressure from family to eat normally, when standards for recovery are set aside in hope of harmony and tradition. That request is in character for a person under the control of an illness seeking to kill and disable its victim.

What I don't understand is why professionals would go along with it, or encourage parents to do so. It is particularly galling to me when the "don't be the food police" phrase get a whole new life during the holidays - after I've spent all year trying to empower parents to take control of eating to save a child's life.

Is eating less important during the holidays? Is the relentless need to restore the body less critical because it might freak out Aunt Somebody who is on a diet and the cousins may feel awkward if you refuse to carry on the 'not eat until 2pm and then gorge' family custom?

The eating disordered mind is always looking for a "free day," a "break," and a higher priority. It seeks data on what mom thinks is more important than that mid-morning snack. For what embarrasses dad in front of his brothers so much that he'd compromise on making sure dinner is on time.

I say don't give ED a holiday. Don't withdraw the safety you provide. ED is asking you "What does it take to make you back off? How much, exactly, do you really care?" And he is taking notes.

The gift you give to ED during the holidays in front of Grandmother and wrapped in keeping peace will keep on giving all year long.

November 23, 2008

What's wrong with this picture?

What is missing here?

Probably: your treatment provider!**

The F.E.A.S.T. Treatment Provider list (now available in map form) is open to all eating disorder specialists and clinics who agree with F.E.A.S.T.'s principles.

Why another list? Unfortunately, parents seeking treatment for a loved one usually choose providers from a list based on proximity, or marketing dollars. Some lists are paid advertisements, and the more a provider has to spend the higher their placement on the list.

I think proximity and marketing budgets are a poor indicator of a provider's ability to help our families. While much of what a clinician offers patients defies description, there are some helpful clues. Not blaming parents or patients for the illness, and agreeing this is a biologically based illness is a good one. A commitment to evidence based practice is another.
The F.E.A.S.T. list needs parents to help. We need you to ask your treatment providers to go to this page: HERE and fill out their information for inclusion on the list. Help other parents find the family-friendly, progressive, and evidence-based care you value.

Too shy or busy? Send us their contact information (form at the bottom).

With your help, we can help families AND let the treatment world what is important to families!

**If you live in the UK or other on national health system, of course, your provider won't be on the list: because it's 'pot luck' on providers. Which is at least as horrible as the $300us/hour or $1Kus+/day we get to choose!

November 22, 2008

Things I learned at UNC

I promised to share some of the things I learned about while at UNC earlier this month. The 4th Annual UNC Eating Disorders Conference was an optimistic event - it has clearly been a year of progress and creativity in the ED research world in North Carolina.

UCAN (Uniting Couples in the Treatment of AN) addresses an area I think is even more neglected than getting parents involved in the treatment. And while the dynamics between parent and child is fraught - imagine between two adults, and how the issues of body image and eating together and finances and trust get mangled. I applaud this work, which extends some of the CBT work being done with couples coping with other illnesses (brain and otherwise).

NURTURE is also interesting: Intervention for moms with a history of ED. It should not be surprising with a genetically transmitted illness that parents would be worried about their children suffering in the same way they did. Add to that the real practical difficulties of a mother who has recovered trying to get things 'right' with their own child, and the lingering effects on the mother in terms of what/when/how much to feed a constantly changing young person. Oy! This program takes a nurturing, educational, and practical approach to this issue.

CBT4BN is another of several initiatives out there seeking to use the Internet to bring helpful care to those who need it. In a time of financial worry and increasing comfort with electronic communication this type of work could change the way we look at therapy.

Chromium for BED - it will be interesting to see how this research pans out. Chromium is easy to access, inexpensive, and if it helps... will be one of the few therapies to help with an issue gaining well-deserved attention.

November 21, 2008

Mom bloggers

I follow 135 blogs. That is easier than it sounds, because most blogs don't post all that often, and because I use a news reader (Google Reader) which in one click lists all new posts for any of the "feeds" I subscribe to. It is kind of like a personalized newspaper for me: when I have a spare moment I go to the Reader web page and I see the headlines/titles for any new posts. I can read the posts or drop them off my queue. I also use it to search the Internet for issues of interest - no more wondering whether I've missed a news story or a new website on a topic I care about.

If I had to go to the web page of every blog I follow I would go too often for some, and miss time sensitive others - using a reader keeps me organized and gives me an ear to many topics of interest (in my case: eating disorders, tap dance, my local community, psychiatry, filmmaking, parenting, the Kindle, but especially: the blogs of other parents.

I enjoy mother and father bloggers, especially those coping in real time with eating disorders. Sometimes the updates are joyous, and some are grueling. One parent often brings up religion and healthcare, another brings in art and heart, and one mom offers information and resources.

I'd like to see more parents join the blog world. It is free, as anonymous as you like, doesn't require technical skills, and there are no rules. Two websites: www.blogger.com and www.wordpress.com can get you started in ten minutes. Join the blogosphere!

November 20, 2008

Anosognosia means never having to say "help"

Everyone who knows me well knows my favorite word: anosognosia.

It means the loss of ability to perceive the nature or severity of one's medical condition. And it applies to eating disorders in a special way: because friends and family and even many eating disorder professionals can share that lack of awareness.

Are you shocked that I use a term more associated with head injury and schizophrenia? You shouldn't be.

Eating disorders are more disabling and kill more people than any other mental illness. They destroy families, ruin careers, isolate loved ones, and waste the lives of precious loved ones. The issue needs to be treated with the seriousness it deserves, not pitied or shamed. And EDs are arguably no more a conscious choice than other brain disease.

The difference is that eating disorders can be successfully treated. But it requires seeing them for what they are: a real biological condition. Reparable brain damage which compels patients to behave and think in such a similar manner to one another while ill that it could come out of a playbook (one we can read in the Minnesota Semi-Starvation Study). A temporary set of thoughts and behaviors IF we recognize it and stop it.

And by "we" I mean parents and friends and clinicians and the media and the public - not the patients. Our job is: safety, nutrition, understanding, skills, love, time - listening to the needs of our loved ones, and not their words.

November 19, 2008

A personality classification system

As we suss out the personality types vulnerable to eating disorders, scientists have identified a personality classification system for eating disorders which may help (and will most certainly annoy those who eschew these depersonalizing labels. But at one time I'm sure some people objected to identifying blood types, though it turned out to be helpful and indeed completely lacking in moral judgements).
  • high-functioning
  • behaviorally dysregulated
  • emotionally dysregulated
  • avoidant-insecure
  • obsessional-sensitive types

Most interestingly, these classifications may provide information about outcomes as well.

November 18, 2008

If it is changing your bones, imagine what it is doing to your frontal lobe...

The lack of alarm about malnutrition during an eating disorder really frustrates me. While we wave our arms and worry and wait for a patient to "want" to get well, they suffer brain damage. While we settle for mild malnutrition because we think they "can't tolerate" full restoration and "at least he/she isn't starving any more," we risk permanent bone changes.

The best way to treat osteopenia and osteoporosis in anorexia?
"early detection and weight restoration are of utmost importance"

The same treatment all people with anorexia need!

We need to redefine "medical danger." Right now, the standard is based on how bad it has to be to require hospitalization. We need to set the standard at FULL HEALTH. That means full weight restoration to optimal functioning, not just out of life-threatening range.

Just as bone changes are not visible, so are brain changes - it requires many months of nutritional stability for the brain damage of anorexia and bulimia to repair and allow healthy learning and development. No level of eating disorder behavior is safe.

November 17, 2008

You may want to sit down for this...

The good news about the past few weeks is that I've been channeling my frustrations into learning a new tap move - don't laugh - I'm making progress:

video

And now I will share an experience I had last night. I went to a house of a family I do not know. In that home were gathered a dozen people, most of them people I do know - and including several with whom I no longer spend time, having fallen out over matters of race and social issues. Under normal circumstances, I find it hard to be with some of them - and if we were to talk it would probably be to disagree.

But we were there to gather the traditional minyan of ten Jewish people so this family could say the Mourner's Kaddish for the daughter of that house, a 24-year old who died this week. Our disagreements on politics, our past hurts and offenses, our hopes to convince each other of our own rightness - these were meaningless. Last night, and tonight when we gather again, we are members of a community, fellow humans, fellow mothers and fathers offering what solace we can to a grieving family.

I wish the mutual respect and state of common purpose applied more widely.

I am a pretty loud and dogged activist for family-centered care, for nutrition as the first line of treatment, against blaming families or patients, for seeing EDs as a brain disease, and for getting rid of tired ideas about eating disorders. My record is pretty clear on this, and I've never softened or muted those messages. I leave quite a paper trail - and cyber trail!

But my enemy is ideas and institutions, not people. I do not equate people with their ideas. I do not reject people who hold ideas I don't share. I do not exclude people from my life for sharing most of my beliefs but failing others. We are all a community, all seeking the same goals, and none of us with perfect knowledge. There are bad ideas, old ideas, damaging ideas - but people are people in their glorious individuality and dignity. If ED has taught me anything, it is the imperative of humility.

When I disagree with someone I discuss it. I engage. I respect that person enough to be able to hear my point of view, ask the same of them, and I believe that if I am right on something that I have a chance of convincing that person of my point of view by engaging. I cannot control whether they do come to my thinking on a topic, but my responsibility is to speak up and say it - not to make them agree. I need to listen, and hear, and ask good questions.

It is inevitable that by taking a stand, one gets criticized. And unless your stand is the absolute furthest end of polarity then you will get arrows from both directions. I'm proud to say that I am, today, nursing wounds on both sides. There is something to be said for being in the line of fire.

In tap dancing, as in the rest of my life, I'm learning. And frustrations get channeled into progress. With more weeks like these, I will be Donald O'Connor in no time.

For the patient, not just to make mom stop crying

I advocate lifting the burden of blame from families. This isn't to make mom feel better or to get dad to re-engage. This isn't just because blaming is unjustified. And it isn't just me:

"A clinician's articulation of theories that imply blame or permit family members to blame one another or themselves can alienate family members from involvement in the treatment and therefore be detrimental to the patient's care and recovery." (APA's Psychiatry Online)

November 16, 2008

EDparentSupport.net

I love the Internet for the opportunity it provides isolated parents to find support and information.

I applaud this: EDparentSupport.net

November 15, 2008

Help my friend Kathleen -

My friend, Kathleen, sends this query for the parents here. Kathleen is a wonderful activist and tireless volunteer for eating disorders awareness!

"My name is Kathleen MacDonald and I am a survivor of a 16 year battle with various eating disorders, all along the continuum. In 2002 I had a major turning point in my life and I (finally) realized that I was going to die from my eating disorders if I didn't take my recovery seriously. I spent from 2002-2004 working on nothing but recovery, putting into practice all the things my doctor and therapists told me throughout the years, and I challenged every trigger --and then some. After a year of working my recovery, I began to take recovery further than I had ever imagined possible. I began to believe that there was life beyond being in recovery. I dreamed it, and then I began to live in the possibility that complete recovery was possible. I now live beyond recovered. I live beyond all of the years with my disorders, all the years prior to my eating disorders, and I live my Life not as a survivor, or someone recovered, I simply (and gratefully) Live, Always Becoming. ~

I am now in the process of finishing a book detailing how I finally recovered. The book does not focus on how sick I was, rather the focus is on HOW I overcame the complexity and hell of ED. I know that when I was sick with ED, and during my recovery, I alienated my family and friends for many reasons, but especially because that was easier than trying to teach them how to deal with me and my eating disorder. I know it left my family (especially my parents) feeling helpless, angry, and afraid...and it left our family full of tension, and me feeling more of a burden.

Therefore, part of my book is dedicated to the carers of those with ED --and I need your input to make that part of my book a success. I am dedicating the focus of a chapter to answering questions from you, the carers.

This is your turn to ask and have answered questions about ED, how to help, the mindset of someone suffering...anything you wish to better understand, support your loved one/yourself, and to help you get through the insidious battle of eating disorders. (I am also dedicating the focus of a chapter to the sufferers of ED...they have provided insight such as answering the following (and more) :

I need you to understand _________, I wish you understood ________, I am trying to recover, but __________, This is so hard because ______________, It is helpful when you ___________, It is not helpful when you ______________) ~

Thank you, Laura, for sharing this with FEAST members...I know their questions will provide great insight to others via the book. I can be reached at: kathleen@freedfoundation.org "

November 14, 2008

Choose a picture for this story

It cracks me up that to illustrate a story on science you show a glamorous picture of a scientist... thinking!

But with this story - Parents’ Genes Are in Competition - the alternative was probably a graphic of two parents scowling at one another and there's plenty enough of THAT when a mental health crisis hits the family.

Interesting theory on brain disorders. We need lots of new ideas, throwing out of old, testing of theory.
When my daughter was a kid we used to quote Mrs. Frizzle from Magic Schoolbus: "Take chances, make mistakes, and get messy!" Actually, we still do. Little did I know we were practicing CBT for anxiety.

November 13, 2008

What makes psychotherapy work? It's the client!

Despite my reputation for being "only about the food," the truth is that I'm a huge fan of therapy. And skilled therapists. I'm intolerant of poorly conceived therapy and undertrained therapists.

The biggest problem with eating disorder therapy to my mind is this: What makes psychotherapy work? It's the client!

But eating disorder patients are anosognosic: they aren't able to grasp their own state of mind and emotion and cognition UNTIL THE BRAIN IS REPAIRED.

Engaging in therapy requires a functioning brain. It requires motivation and engagement and cognitive flexibility. It requires self-awareness - and eating disorders rob the brain of that while the body is still undernourished. And by nourished I don't just mean weight restored - I mean the brain damage is repaired. I mean you need full weight restoration, behavioral stability, and then a few months of healing FIRST.

I think therapy while a person is still brain damaged or acting on ED compulsions by binging or purging is like therapy while drunk.

If you showed up for your appointment drunk or high, I don't think it would be ethical to sit and explore your issues or review your week. But people routinely show up for therapy while underweight, having recently binged or purged or over-exercised.

It is time for a zero tolerance for continuing brain damage during eating disorder treatment. An end to minimum weight goals, of "out of medical danger" as a standard for recovery, and of "improving" as a measure of success.

For all patients, from the day of diagnosis, period.

November 10, 2008

I really don't want her to wind up fighting the same battle

A mom recently asked: How Can A Mom in Recovery Set a Good Example?

I told her I 'd ask the question of my readers:

"I've been dealing with body image and eating issues for the past 2 decades including a bout with bulimia when I was 17 (I'm now almost 32). Although it's been 14 years since I was able to break free from the worst of the unhealthy behavior, it's remained a struggle for me and I still consider myself "in recovery" rather than "cured". The times when I've felt most vulnerable to a relapse have been during the post-partum period when I'm trying to lose the pregnancy weight without crossing the line into unhealthy behavior.

I'm currently 8 mos pregnant with my 3rd and am really worried about how I can set a good example for my 6 year old DD. She's now aware enough to pick up on any negative messages I might send about food and weight. I really don't want her to wind up fighting the same battle I have.

Does anybody have suggestions for resources (aside from therapy which unfortunately isn't an option for me right now) to help me with this issue?"

November 9, 2008

Back from Chapel Hill

I was at the University of North Carolina over the weekend, invited to speak from the parent perspective at their 4th Annual Eating Disorders Conference. A brief overview:
  • Rented a snappy little car on Friday morning, and with the liberal use of GPS and XM Radio, enjoyed a gorgeous 4 hour drive south through the fall foliage.
  • Gas price range observed: from $1.99USD to $3.70USD standard unleaded.
  • Arrived to the hotel only to find a wonderful someone at the desk writing me a note and bringing me a cupcake and sweet potato scone by way of welcome: THANK YOU, DOREEN!
  • Went over my slides for the next day while waiting for my friend, Nancy Zucker (of Duke and "Off the CUFF" fame) who picked me up for dinner in her zippy little car.
  • Enjoyed a fantastic dinner and conversation with Nancy, trading ideas and collaborations, then we got terribly lost trying to find the hotel again - as I remember I was going on and on about the word "anosognosia" and we took it a bit too seriously!
  • Bright and early to check in with tech staff at the Friday Center who went above and beyond to solve my PowerPoint issues.
  • Recognized T.J. Raney purely by voice after only knowing him from AED conference calls this past year.
  • Learned loads from Dr. Cynthia Bulik's presentation updating the audience on research. I will post on this later.
  • Fascinating work being done to adapt CBT couples therapy when a partner has an ED.
  • My bit was scheduled for after lunch, giving me the advantage of a well-nourished audience.
  • I enjoyed doing the presentation. My title: The Secret Life of Parents: The other 10,050 minutes of the week. (In other words - what goes on outside the 50 minutes we're there at a clinician's office)
  • Had to wing it when my presentation notes got swallowed into the viewer halfway through...
  • Doreen made a pivotal guest appearance during the Q&A. Did I mention what fun it was to meet her in person and have her as part of the weekend?
  • Met lots of really interesting and interested people - will be talking about some of them in later posts.
  • Out to dinner with T.J. and Doreen. A full circle of topics around pizza - and a dissertation by the waiter on the group dynamics of dessert.
  • Left the hotel this morning at dawn to be home in time for my husband to leave on HIS business trip.
  • Said goodbye to the cute car, and to husband.
  • Made lunch.
  • Blogged.

November 8, 2008

Am I making you uncomfortable?

I forgot.

I forgot how odd and scary and weird I used to find the topic of eating disorders. I stopped realizing how tweaked out people feel when I talk about it. Oh, and I stopped caring.

I'm reminded of all this, recently, as I count up how few people in my non-ED-related life have ever actually engaged in a conversation on this with me. How many of even my family and friends haven't found time (interest) in reading my book. And how many of those who have read it shy away from talking about it with me.

Last night a member of my family called the topic "depressing." My book club (together for over a decade) finally read my book recently and (of the few who showed up that night) only one among them actually discussed any content in it.** One confessed that the group may have felt it was a "no win" situation to read it, and that the topic was so personal that it was like being a "voyeur."

I don't find the topic too personal, depressing, or off-putting. I find it interesting, cathartic, educational, and helpful to talk and listen and learn. I suspect those who are uncomfortable with it are still in the mindset of the illness as a shameful secret, an embarrassing vanity, a sign of troubling past.

I also suspect this is what the topic of breast cancer once did to people. Now people wear their pink ribbons with pride and in mixed company, there are marches and walks and survivor celebrations. There is also now, with breast cancer, a fierce network of fundraising and research funding and information sharing. No coincidence there.

I'm sick of the squeamishness over eating disorders and of mental illnesses in general. I'm sick of people being wary of the topic and very tired of feeling as if I am imposing when I bring it up. It's a brain. It gets bruised and broken. Most families have some people touched by it. There is treatment, and hope for improvement and full recovery. Get over it.

If you have a friend whose child has an eating disorder, I have advice for you. Ask. Read about it. Talk about it. Bring it up. Listen. Keep asking, reading, talking, bringing it up, and listening.

And if you have a friend who wrote a book, a tip: buy it. Read it. Talk about it. It's okay.

**P.S. I quit. (Book club)

November 7, 2008

The slippery slope

Weight restoration during eating disorder treatment isn't everything. It is, however, the fundamental first step. Want to have a better chance of full recovery?

The slippery slope: prediction of successful weight maintenance

"CONCLUSIONS: This study found that the best predictors of weight maintenance in weight-restored AN patients over 6 and 12 months were the level of weight restoration at the conclusion of acute treatment and the avoidance of weight loss immediately following intensive treatment. These results suggest that outcome might be improved by achieving a higher BMI during structured treatment programs and on preventing weight loss immediately following discharge from such programs."

November 4, 2008

CNS Response

A company called CNS Response has entered the ED treatment world, rationalizing medical treatment with the use of EEG:

CNS Response Provides Review of an Eating Disorder Poster

I've long hoped for better biomarkers and rationalization of all mental health care, and I'm glad to see it happening. As Sharon Begley said last year in "Putting Brains on the Couch" in Newsweek:

"psychiatry could stand to be dragged into … well, let’s start with the 20th century."

November 3, 2008

I'd vote for these kids!

My husband sent me this and then followed me around until I watched it:
Kids 'rap' the vote



How can one not feel optimistic about childhood after viewing that?

November 2, 2008

Readers read, now write!

What book should parents read first to understand eating disorders and support a loved one's recovery?

The F.E.A.S.T. site now offers a book review section, and a way for you to rate books you've read with just a click. It's anonymous (if you wish) and quick.

The book you got the most out of isn't listed? Submit it! There's a form for that on the page as well.

And yes, my book is on that list - my mother recommends it highly! (And I'd be honored if you read it, but my top vote is always for the "Help Your Teenager Beat an Eating Disorder" - it is the one book I think all parents need first and most, for patients of all ages.)

October 31, 2008

"eye wiggling"

I remain fascinated by the use of "Eye Movement Desensitization and Reprocessing therapy (EMDR).

It's worth a... look:
What is it about eye wiggling that helps people recover from trauma?

Although I find the relationship between trauma and eating disorders tenuous, it is clear that the experience OF an eating disorder IS traumatic. Starving and being compelled to rid oneself of food - no less devastating (perhaps more) than if imposed by an outside person. And recovery? Being forced to endure the painful re-entry to one's own body and life in order to live; that's traumatic.

More tools in the toolbox - always a good thing.

October 30, 2008

Well-meaning

I fielded a call yesterday from a website/organization asking if F.E.A.S.T. would provide a link to their treatment finder. I was amazed at the answers to my questions:

Are you for profit or nonprofit? No real answer.

Who are your employees and volunteers and staff?
People who have been involved with eating disorder treatment. (The website has no real contact information or address or people named)

How do you decide how to match clients to treatment providers? Experience and perseverance.

So families call you seeking help? Well, we try to speak directly to the patient, but sometimes families call.

Have you heard of the Family-Based Maudsley approach? No.

This is a potentially DEADLY, CRIPPLING, FAMILY-DESTROYING illness which generally has its onset while the person is a minor or young adult. This is not Christmas shopping or picking a color for one's kitchen.

How can people be offering advice to people on treatment when they are not even aware of the basic science and recommendations in the area? Good intentions.

But here is the most troubling thing of all. This particular site isn't doing anything unusual. Lists of eating disorder specialists are not composed of people under some professional standard, following a validated protocol. You can list yourself as treating eating disorders without any sort of license, membership, or code of ethics. There is a lot of snake oil being sold alongside the real science-based and experienced clinicians.

And we, as parents, are perhaps the least likely to know this. We assume a care provider is an expert, has training, and there are professional standards behind recommendations.

Good intentions are not enough. Don't stake your child's life, your family, your other children, your marriage, your job, your finances, your retirement, your child's future health insurance, life insurance... on "We care."

October 29, 2008

Parents Help Other Parents Cope

Passing on a message from UNC/Duke (US):

Words from the Experts:
Parents Help Other Parents Cope with their Child’s Eating Disorder


Do you want to help researchers learn what families who have been affected by a child’s eating disorder need most?

Share your thoughts and ideas for helping parents to take care of themselves while coping with their child’s eating disorder. Graduate students from the University of North Carolina at Chapel Hill are conducting focus group discussions in October and November to learn about parents’ experiences and challenges associated with having a child with an eating disorder. The discussions will be held at Duke University Medical Center and will last approximately 1.5 hours. Information gathered during the discussions will be used to help develop messages encouraging parents to seek support and care for themselves and cope with the fear of their child’s disorder reemerging.

Each participant will receive a $10 gift card and refreshments as a token of appreciation.

If you are interested in learning more or signing up for a focus group, please email Nancy Zucker at edresearch@mc.duke.edu or call 919-684-0149, mention the parent discussion group and leave your name, number, and email. We will confirm your participation with a follow-up email and will inform you of the location, date and time. Thank you.

October 28, 2008

Mom as "Punching Bag"

Here is a mom who would probably like to hear from other parents.

She feels like "a punching bag."

So Much Straw

October 25, 2008

Special families, specialists

Parents, when you are told that research shows Family-Based Maudsley treatment "only works for a small number of patients" or "only small studies have been done," remember this: there is no research basis AT ALL for the alternatives. And that YOU are very likely "the small number" and "special" circumstances: a family willing to step up and stick it out.

If we wanted to be blunt we could, considering the dismal recovery rates, ask whether successful treatment only works for a "small number of clinicians."

October 24, 2008

Do I know you?

OK, I bet I'm not the only one to find this freaking TERRIFYING: Scientists succeed in selectively erasing memories (in mice).

Or to find this comforting: Cortisol for Post-Traumatic Stress Disorder

And this intriguing: False memories can influence behavior

For the record, I believe we have a right to our true memories, but also relief from debilitating pain from those memories, and must be wary of how maleable memories may be.

October 23, 2008

Who, really, is crazy?

When I read stories like this...

Tragic anorexic Carole Patrick dies in York after 30-year struggle "York Coroner Donald Coverdale, recording a verdict of death by misadventure, said her death was the “unfortunate and unintended consequence of a medical condition arguably under her control”

... I feel so frustrated. Since I come at this illness believing the patient has a brain condition - one that they CAN NOT understand until they are nutritionally restored and the brain has healed - I see so many points along the line where misunderstanding of the illness was a tragic lost opportunity.

For the family watching the illness - who might have reacted differently if they had the right information early.

For the clinicians whose only avenue was to try to convince the patient to understand.

For the coroner, whose "misadventure" in interpretation simply perpetuates poor information.

For the public who are being induced to pity instead of act.

For the families who, reading this article, will not hear the words "brain disorder" or biology or genetics or TREATABLE ILLNESS even once.

For the employers who unknowingly enabled the illness.

For the grieving family who have been ill-served during and after.

But of course completely for this woman, who lived her shortened life in a living hell for 30 years - a hell she neither chose nor could choose to stop. Thirty years of suffering that could have been prevented, or stopped if the world outside her had the knowledge and the will to do so.

October 21, 2008

From DNA to the Dinner Table

Don't you love the title of the conference I'm speaking at on November 8:


From DNA to the Dinner Table:
Couples and Families in the Treatment of Eating Disorders

This is the University of North Carolina's Fourth Annual Eating Disorders Conference, to be held at the Friday Center in Chapel Hill.

I would love to see you there - if you tell me you are coming I'll bring a Gold Fork pin for you!

"Speakers will cover critical topics such as couple-based therapy for anorexia nervosa, involving the family in treatment, parent training for childhood weight control, nutrition and brain chemistry in individuals with eating disorders, and dialectical behavior therapy for eating disorders."

(Printable Brochure)

October 19, 2008

Why I enjoy my job

Why I enjoy my work:

"One year ago my d was "officially" diagnosed with (anorexia). She was 90 pounds at that time.

One year ago my life seemed to be crashing around me. Our family was falling apart.

One year ago we began seeing and old school therapist who just made things worse.

One year ago I never, ever would imagine that my daughter would be in recovery.

One year ago I blamed myself. I believed I was a bad mother. I wanted to run away and never look back.

And then..

One year ago, by the grace of God, I found this forum.

Here I am a year later. The mother of a recovering an d. Without Laura and all of you on the forum I would not be where I am today. This forum gave me straight forward advice. It guided mein re-feeding my daughter, and encouraged me to do "whatever ittakes" to getmy daughter help. You all told me that I was not to blame, that I was not a bad mother, that there was hope.

There were times when I didn't believe it. I did not think my d could recover. But you never gave up, and you all gave me such hope.

So a year later, my d is 22 pounds heavier. She is a happy person, dealing with the ups and downs of teenage life. She sees a family-based, maudsley trained therapist who is 2 hours from our home.Sheeats lunch and snacks on herown and has been maintaining her weight.

Are we out of the woods? Almost. I hate this illness but it has helped me realize what is important and what is not. I don't sweat the small stuff too much unless it involves food.

Anyway, I just wanted to say THANK YOU. I don't post as much but I am here. Reading, understanding, and still learning. God Bless all of you...Missy"

October 17, 2008

Lest we forget what we're dealing with

I think it is important that we know what we're dealing with in the manipulations of the body that we mistakenly call "sport:"

Weight-class issues keep Carano from reaching top

I'm not against athletics, but just as the word "healthy" is so often misused in practice, we should not allow athletics a pass or special permission to punish and abuse the bodies doing them. When the cheering ends, there is a person who has the rest of her or his life to live.

October 16, 2008

Lighting the way to a common cause

Eating disorders are, and desperately need to be seen as, one of many devastating brain conditions. As long as we live in an intellectual cul-de-sac where eating disorders are not included in discussions of - and the eating disorder world is reluctant to be seen in the same sentence as - schizophrenia and depression and Parkinson's we will continue to fail all the people and the families struggling with serious mental illnesses.

Genetics sheds light on mental illnesses offers one of the reasons why we're all confused: "This is just so much more complicated than anyone wanted it to be." And why the search has been so halting: "we didn't see it because we weren't looking."

"Psychiatry is all but unique in medicine in its utter lack of chemical or biological tests to determine what a patient has. Genetic research could lead to diagnostic assays to help determine whether, say, a troubled child suffers from bipolar disorder, impending schizophrenia, or garden-variety growing pains."

Just imagine for a moment: what if the first day one suspected an eating disorder or depression you could go to the doctor and have a test to diagnose it and begin immediate treatment based on the best knowledge available. Imagine if treatment recommendations were based on verified knowledge of how a particular population responds to a particular approach. So much suffering, the immense wasted suffering of delayed diagnosis and bumbled treatment could be alleviated.

(much thanks as always to my friend, Catherine, for bringing this and other great articles to me fresh off the - ink-less - presses)

October 15, 2008

Optimistic faces and voices - New York Times


I love connecting people!

Helping parents find each other, find good clinicians to work with, find information, and help others. I love knowing that when reporters contact me looking for families to interview, or researchers are looking for families for studies, I have a network of willing participants. Between the 1000+ mailing list I've developed over five years of networking, the readers of my blog, the membership of F.E.A.S.T., the readers of Around The Dinner Table - I feel like a librarian for a precious collection of wise and caring resources.
The New York Times was looking for patients and family members a few months ago for an interesting series on patients of various types. I put out the call through our Speaker's list and the response was great. The Patient Voices - Eating Disorders includes several in the F.E.A.S.T. community, and others I've had the honor to meet. As we get a diversity of voices out there, the public face of eating disorders will change.

THANK YOU to those who participated. Thank you to Karen Barrow for what interviewees described as "sensitivity" and "professionalism."

Thank you SO MUCH!

October 12, 2008

My long-suffering husband knew as soon as he heard it

Watching public TV, just now a show on birds gave the most astonishing fact: that hummingbirds eat around 10,000 calories a day. TEN THOUSAND. Each. A day.

Not that there's anything wrong with that!

If humans had an equivalent metabolism, we'd need over 100,000 calories.

Next time our kids balk at dinner and repeat a conviction that they "can't" eat so much, or that they shouldn't need what they need, that dessert will make them fat, or ascribes some moral value to how many calories one needs...

Bring up the hummingbird.

Hearing this tidbit I turned to look at my husband who laughed: "I KNEW you would blog on that as soon as I saw it."

October 11, 2008

Validation

I get it now.

As the debate went back and forth on this blog, the Around the Dinner Table forum, and in my email about yesterday's exchange with Rachel I learned some things. I started the post in search of a reality check on, well, ME. Asking whether - and if so why - my words and record are taken as insensitive or diminishing. It was a self-centered request, and everyone duly ignored it and went on to the philosophical debates at hand: FBT/Maudsley/Biology/Parents do-don't cause EDs.

And then I finally got it: no matter how nice a person I am, no matter how sensitive, nuanced, balanced, positive I may see myself - my guess is that Rachel (and other people) feels insulted, minimized, trivialized not by me but by my beliefs about what causes and treats eating disorders.

Just by believing, and saying, that eating disorders are biologically based I am being insensitive to those who do not. My understanding of the mechanical function of nutrition in recovery denies the hard work of achieving it. My conviction that parents do not and can not cause an eating disorder in their child obviates the grievous wounds some parents DO inflict on their children.

I probably could devote my work from this day forward to repeating all my additional beliefs about this illness that don't include the above but it wouldn't help. And we could bat these issues about all day and get no clarity, because none of this is 'black and white.' There are no easy answers and as comforting as it might be to pretend otherwise NO ONE KNOWS what causes eating disorders and we AREN'T SURE what the best treatments are.

But most important: it doesn't matter. Because the end results are the same. We are all for recovery, full recovery. We all know that without full nutritional and behavioral restoration, people aren't recovered. We all agree that all people deserve stable, caring home environments and healthy relationships. We all know that recovery is INCREDIBLY hard work whatever the method. We agree that no one is perfect and that all relationships can be improved. No one excuses or discounts the impact of abuse or neglect or unkindness or insults.

Where is the disagreement?

Rachel, I do believe eating disorders are triggered by biology. But environment acts on biology - and the reverse. It takes psychological and cognitive WORK to recover. It took my daughter as much work and pain and heroism to fight her eating disorder as anyone. Her challenges were hers, and yours were unique to you. I admire you and her and all the wonderful recovered patients I'm honored to know.

Believing in a biological basis to the illness does not invalidate your work, your beliefs, your recovery story. Believing that most families whose kids have eating disorders are perfectly normal does not minimize that yours was perhaps not. You don't need an eating disorder history to deserve credit for working out your relationship with your mother and getting redress for your pain.

I respect and admire you. And I thank you for this exchange and the others we've had on this.

And for clarity's sake, I'll restate my beliefs. These should not be confused with what other parents believe, or what "Maudsley" is, or any other theoretical framework - just me:

  • I believe eating disorders are a TREATABLE biologically based genetically transmitted brain disorder with environmental triggers - (e.g. dieting, overexercise, extreme stress, illness, metabolic/hormonal issues). Once triggered, the cognitions become self-perpetuating.
  • I believe eating disorders temporarily control patients so that the person is unable to accurately perceive their physical state, interpersonal relations, and functioning.
  • I believe restoring full nutrition and normal eating behaviors is the first and fundamental treatment - but in most cases adjunctive assistance or therapies are necessary to deal with co-morbid conditions and to deal with problems in the person's life that impede recovery or risk relapse.
  • I believe families are the best resource in helping the patient regain control over the eating disorder and go on to healthy normal lives.
  • I believe patients have to take on responsibility for their own health and continued recovery when they are ready to do so.
  • I believe all families need a LOT of help learning to do the above, and some families need a LOT more help, but only in the rarest exceptions do families need to be separated in order for a patient to recover. And in those cases intervention was needed anyway.

October 10, 2008

"my personal experiences diminished and trivialized"

Of course, it is unfair to expect people who read this blog to be a fair sample - presumably you read here because you like it - but I'm interested to hear reader thoughts on Rachel's response to my blog post yesterday.

Do you find me insensitive? Diminishing? Trivializing?

And if not, why does it seem that way?

Rachel said...
... I really wish you would be more sensitive in this regard, Laura. I realize and understand your position that anorexia is entirely a brain disease, and I concede that that may be true for many people. However, there are people like me for whom our disorders are, in part, a product of emotional instability and therefore are "not really about food."

It really hurts me as a survivor of anorexia and bulimia turned educator and activist to constantly see my personal experiences diminished and trivialized and that is one of the prime reasons I don't read your blog more.

Eating disorders are all about the black/white thinking. Surely, there should also exist shades of gray in the ways we go about combating eating disorders.

Laura Collins said...
Rachel,

I apologize.

I'm surprised and sad you took my post that way. And I think you may have not understood what I was saying - or I inadequately expressed it - because I don't disagree with what you've said.

My point was to say that people are confused about the BED connection because they (incorrectly)think BED *IS* just about food but (incorrectly) think AN and BN are not. Both are wrong.

As you know I believe eating disorders are a brain disorder - brought about by both biological and environmental factors. If you aren't born with the genes for an ED you are not going to develop one. If you are born with those predisposing traits/genes but don't experience those environmental triggers (dieting, overexercise, illness, extreme stress, hormonal problems...etc.) you may never experience one.

My position is that without addressing the food part, the brain can't recover enough to do the thinking part. But I've never believed or said it was "ONLY about the food."

I don't think my daughter, also a survivor, or other survivors I know, think I diminish or trivialize her illness or anyone else's.

Being a brain disorder doesn't minimize the importance of environment or of the WORK of recovery, to my mind - it actually EMPHASIZES the importance of how society and loved ones respond to the person. (Otherwise I'd just be arguing for lifetime feeding tubes.) That's what all my work is about: changing the environment around the patient - beginning with but not exclusively the medical restoration. Getting rid of the blame and the anger and the shame and the wrong answers to the wrong questions. And if there are problems (and most of us have them) fixing them!

I may lean one way in my emphasis, but I'm not black/white in my understanding or my record on this.

I'm also a foster parent, and used to work at a rape/crisis center - I'm not naive or discounting the incidence or significance of bad parents and bad people. I'm simply a believer in getting people help for THEIR lives and unique circumstances - whatever those are. An eating disorder isn't a sign of bad things in that life - and a horrible life doesn't only deserve help when the person develops a mental illness.

I wonder if my emphasis seems black and white to you because that is YOUR frame on me. Because I know it isn't mine of yours. I don't find your work and mine as mutually exclusive, or in conflict - and I'm not sure why you do.

As for hurt, Rachel. Please keep in mind how much it hurts to have my experience as a parent and those of the vast majority of parents of eating disorder patients be treated in the media and in eating disorder literature and in therapist's offices as automatically worthy of blame, shame, and guilt. And that hurt makes helping our loved ones that much harder. That is why I do the work I do.

I apologize for hurting you. I really do. I respect you, and your work.

October 9, 2008

BEDA - Binge Eating Disorder Association, Inc.

In recent years, I've noticed a tentative move toward having Binge Eating Disorder included in the term "eating disorder."

Part of the reluctance of the ED world to do this is, I'm quite sure, based on prejudices about weight - putting people terrified of weight gain in the same category as people whose illness sometimes creates weight gain. Part of this is that BED hasn't been included in diagnostic ED categories until more recently - and not completely. Then there is the fact that most people still think of eating disorders as "not really about food," and there being some virtue and self-control being attached to eating and digesting less than one needs (untrue). I think it is also very common to confuse BED with "obesity" and the reverse.

The reasons BED is being incorporated more often now? I think people are realizing that all of these behaviors are rooted in the brain, and all involve restrictive eating (sometimes leading to bingeing, sometimes leading to purging and sometimes not). Another reason is practical and tactical: the "obesity epidemic" mania is bringing funding and attention to the ED world in a way that anorexia and bulimia just couldn't draw.

I will confess to being slow to incorporate BED into my own use of the phrase "eating disorders." I think I've been so eager to get people to pay attention to anorexia and bulimia - ANY attention - that I didn't want to complicate the message with all the ideological baggage out there about fat.

Well, here's an organization ready to address this slow and tentative movement toward integrating all eating disorders:
BEDA - Binge Eating Disorder Association, Inc.

I'm ready to raise my consciousness and give some serious attention to the connection between all eating disorders. Thank you, BEDA, for pushing us all toward integration and clarity!

October 8, 2008

The context of perplexity

I love that Halmi picked the word "perplexities" for this otherwise droll title: The Perplexities of Conducting Randomized, Double-Blind, Placebo-Controlled Treatment Trials in Anorexia Nervosa Patients

The word choice alerts you to something important. Something that came up in the excellent overview of research given by Dr. Lock and Dr. Kaye at the recent NEDA conference in Austin: "In contrast to studies of adults, randomized, controlled trials for anorexia nervosa family studies have dropout rates of 10% to 20%" For adult studies the average dropout rate is 40%.

When people talk about the fact there is is so little research to support various treatment approaches, consider it in context. There is little research AT ALL.

Eating disorders, especially anorexia, are anosognosic and egosyntonic - the victim understands only a fraction of what is happening and what they do understand falsely seems to be going their way. Adult patients resist beginning treatment, not to mention being randomized into studies, and they also drop out of treatment not because they don't need it, but because it is a symptom of the illness to do so.

The difference, when family is involved in the treatment, is you have people who are not living under the dictates of the illness able to keep the process going. Children and adolescents (and dependent adults) don't have a choice if their parents are on board: appointments will be kept, recommendations will be heard.

This also makes the very optimistic findings on Family-Based Maudsley treatment more significant. And adds another perplexity: why, when the Journal of Clinical Child & Adolescent Psychology makes it very clear: "At this time, the evidence base is strongest for the Maudsley model of family therapy for anorexia nervosa." that most families are neither offered FBT/M nor are we told it exists.