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.