February 27, 2011

In case you missed it: participate in a study on how child's eating disorder affects parents and family

Another opportunity for parents to share their experiences with researchers:
Researchers Dr. Merle Keitel and Lauren Stack, M.S. from Fordham University are presently conducting a quantitative study of how a child's eating disorder affects the parents and family, focusing on coping reactions and significant relationships.  Participation is open to parents of a child, ages 9-22, who resides at home, and who is presently in outpatient treatment for Anorexia.  Participation is online, takes no more than 15-30 minutes, and is confidential and anonymous (no personally identifying information will be collected).  Please enter the following the link into your internet browser: http://www.surveymonkey.com/s/VN5VTDF and enter the password participate (in all lowercase letters). Please contact the researchers directly with any questions, comments, or concerns about this study at Lauren at lfstack@gmail.com or Dr. Merle Keitel at mkeitel@fordham.edu. NOTE: This study has received IRB approval from Fordham University and Researchers will adhere to APA's Code of Ethics.

February 26, 2011

How parents can be wrong and still not cause eating disorders

Parents don't cause eating disorders. That doesn't mean parents are good. Parents vary. Some suck. Some do horrible damage. Some just fail to show up. We have an enormous influence over what happens to our kids and when they have a mental illness our influence over their outcome can be lifesaving (Case History #2: Young Man with Restricting Anorexia Nervosa), or tragic: (Case History #1: Young adult woman with severe anorexia nervosa).
Parents deserve, and need, the benefit of the doubt. Too often, the bad experience of dealing with parents like those in the latter case history can lead society and treatment providers to hold parents like those in the former history hostage to assumptions that would keep them from responding in the best way possible.

Parents need to be held accountable for their harmful actions and beliefs - to help the patient and the family. It should not be ignored or worked around. I'm not excusing or ignoring anything when I say parents don't cause eating disorders - just asking people to stop using "cause" as the only reason to care or intervene.

February 23, 2011

Sunsets and butterflies

A quick review of my posts chagrins me: so dyspeptic. As long as I have your attention at this moment can I say that I really am an optimistic and positive person who feels fortunate and appreciative and humbled daily?

I know, C, I've gone daft moo. But today I have no message but this: thank you to my life. My family, my friends, to fun and good and goodwill.

Beads and feathers, even.

As Jenni sings: It's okay to be happy.

February 22, 2011

Eureka! High school scoops scientists on weight

Notify the Nobel committee! This is the biggest medical breakthrough in modern history: a school in Utah has not only discovered how to measure "healthy weight" but also how to achieve it!

Or... not.

If the best scientists and clinicians in the world don't have a measure of "healthy weight" for individual humans, not to mention children, and also don't have a method for getting people there without causing illness in some and repeated damage in most, then why does Baer Canyon High think it does? Giving scholarships based on BMI is akin to offering scholarships for height, for self-harm, for setting oneself up for a lifetime of metabolic and psychiatric problems. Oh, and sorry anorexia patients and those predisposed for them: you're not eligible because "some people don't need to lose weight." You're already perfect and don't need a scholarship anyway.

Dieting doesn't "work." Living a healthier lifestyle isn't measured by weight. This facile belief that we can just choose a weight off a chart and "achieve" it by dint of will is so demonstrably false it pains me. That the diet industry sells this idea is to be expected, but a school - really? Really?

Baer Canyon High administrators, should you read this, I know you mean well. I also know you will misunderstand the message here because you are operating under common but flawed assumptions. You will think that I'm plying a defeatist, self-justifying, pessimistic view and that I'm wrong on the science. Tell you what: keep stats on your little project here. Follow those students for 10, 20 years. And then when public health policy catches up with the science and those adults you've harmed -- with ongoing metabolic and mental problems REWARDED by your policies -- can hold you accountable.

It gives me no pleasure to know that I'm right here. I'd really rather be wrong.

February 20, 2011

Why can't we all just get along?

This past week there's been an ugly clash on an online forum for professionals treating eating disorders. One of the users said that parents are "more often than not" toxic.A vigorous discussion ensued. Good points were made, thoughts were aired, and emotions were high.

This conflict distressed people. The forum's solution was, as in the past, to ask everyone to stop talking. I believe this is called "denial."

The field is deeply divided on a number of practical and ideological issues, and the flashpoints reveal real and necessary conflict. That someone would think eating disorder patients' parents are more toxic than other parents isn't a novel or rare point of view, but that such a statement not draw attention and call for strong objection is absurd: of course it should. Unless, of course, the organization and its members don't agree that this is an important myth to dispel. Or that the cascade of exaggerated accusations and misunderstandings not seem like an opportunity to chase down some common ground. What was needed was for some brave adults in the leadership to bring some authority to the discussion by commenting themselves. Maybe one or two of the posters might need to have been talked to -- even admonished -- and maybe even ON the forum.Stopping the conversation won't make it go away. It will only make ME go away, and others.

As a result of this melee, which has happened before, two new groups have formed - comprising both sides of those tired discussions - and will form their own discussion groups. Leaving conflict, courage, and any actual progress, behind.

February 18, 2011


I was recently whining about the futility of trying to get necessary big changes to happen. I likened the good sense of my friends to be a rightous little moped moving in the opposite direction of an oncoming bus going the wrong way: they face being squashed or at best just blown into the ditch by the wake.

And being wise, M reframed the issue: "Mopeds are very different vehicles to buses and have different uses. Zipping in front of the bus on our moped risks getting us arrested or worse still being the cause of an almighty crash killing the good (and they ARE good, well meaning) people on the bus. What we CAN do better from our moped than they can do from their bus though is to deliver our message straight where it's needed, that's why pizza
delivery companies use mopeds not busses."

February 17, 2011

Stanford event "Eating Disorders and The Athlete

February 24 at Lucile Packard Children's Hospital, California
Dr. Jim Lock
Eating Disorders and The Athlete, LPCH Eating Disorders lecture

Friending as a verb

Now that friending is a verb... what is a friend?

I've been 'on the Internet' since around 1992. (Obsessive fact: I save all my emails so I still even have my first ones: to the three people I knew at the time who had email addresses, including my dad) In the intervening years I've used the Internet to study and communicate with others in a biography of my decades: homeschooling, broken tibia, ecotourism, emu farming, goat castration, wildcrafting, cheesemaking, soapmaking, miscarriage, foster parenting, adoption, entrepreneurship, first home purchase, old house maintenance, snakes, plumbing, mental illness, eating disorders, eldercare, creative nonfiction, small town journalism, Virginia history, slavery, lynching, masonry, fashion, nonprofit management, tapdancing, website management, stinkbugs, and more.

Yet much of my online life is the study of friendship. Relationships. There is nothing impersonal about the Internet when most of what I do "here" is responding to and reaching out to others. Dozens of new people every week. Some stay, some come and go, some I meet for realsies, and some I have a relationship with for years without meeting. The phone, and Skype video fill in larger and larger gaps. Between email and blogging and the forum and all the other messaging it is a lot of people time.

Because my life is somewhat "public" I also keep a great deal of it off the Internet. Less than I used to, but I still have a certain sense of what is mine to share and what is my family's or that of my friends that ought not be shared between them. Most of my longtime friends, and those in my town, don't read my blog or "follow" me - although it is easily accessible I'm always surprised when they do. So the more Internet-based the relationship the less likely to stray into that life that isn't "public," but not always.

Yesterday I was talking with a friend (one I consider both a personal and a colleague friend) about friendship and it started a cascade of introspection. I realized that I no longer look at, or will speak of, virtual friends as less of a relationship than so-called "real" friends. It just isn't true any more. It's a false distinction. Did we say that of Victorian letter-writers? Of Emily Dickinson and Mr. Higginson?

How about "friends" in the advocacy world? My friend warned, rightly, that it can lead to being co-opted and seeking to be nice and liked instead of heard and respected. I'm ruminating on that. When I started on my advocacy work I was not friends with anyone - had never met them except by their writing or reputation. Years on now, and I know lots of people in the field: researchers, clinicians, and advocates. I've made friendships, some of them extending into common interests and companionship far afield from eating disorders. Does that make me a better or worse advocate... yes, and no, I think. The risk is there - that I soften up on someone's ideas and actions because I know them and care about them. It has happened. And yet this could be a strength, because with a friend I have a sense of how far the issue can be pushed before it becomes Pyrrhic, and I also know that the relationship itself is a mutual investment.

I continue to believe it is possible to separate ideas from people - and respect people whose ideas I disagree with and continue to work against.

I've also lost friends. People I really did feel I had a relationship with bigger than our common ED interest, but lost the friendship over real differences of opinion or policy. These continue to pain me, of course, with a sense of loss and my own failings. I'd like to earn those friends back, completely outside of ED work, just because I respect and like them. It'd also be nice to have their professional friendship back, as they do good work, but it's secondary.

My processing is midstream on this issue. One thing I realize already, though, is that it is the friendship over time with that particular person who prompted this rumination that made the critique credible and urgent to me. Without that relationship over time, with humor and meals and beer and arguments along the way, that may tip the balance to my inclination that it is the relationships - not just the ideas and principles - that do the work, but only if the ideas and principles are rock solid and not even for friends will they be concealed or softened.

February 16, 2011

Dude! Where's my meal?

This is priceless. Absolutely priceless!

Conspicuous consumption

Fascinating riff on "Documented Instances of Public Eating"

Appetite and actresses

Makes me wonder about the culture of self-deprivation, and conspicuous consumption. About the construction of celebrity. And about what guanciale tastes like...

February 15, 2011

Picasso's anorexia

Got Got to love a great visual for a story.

Women with eating disorders draw a different picture of themselves than women without

Impossible not to speculate at the decision process to choose these particular drawings. I am picturing the researchers saying "Well, yes, this does look like an emoticon, but it shows the neck and foot thing." "The Barbie one needs to pull down her skirt a bit - would it be wrong to Photoshop it --but it does demonstrate the breast and hip thing." "The normal weight one is smiling - are we sending a message there?"

But what I really speculate about is whether once people know about this test they will - as the article states - add cartooning skills to the ways to avoid diagnosis?

If you're not taking flak you're not over the target

I am feeling cross.

I am watching families suffer all over the world every day, so forgive my smoldering.

I see families in national health systems that offer free and universal care but limit it to "evidence-based" care even when the evidence is so scant there's little to offer.I see families without national health systems who can buy any number of myth-based care options if they have the money, or resort to short doses of emergency care that actually leave the patient worse off because the full dose is too expensive.

I see parents forced to step up and assume all care for their children, and other parents not ALLOWED to step up for theirs.I'm watching mothers and fathers who do have good information trying to give it to others and rebuked. I see parents beaten down by bad information unable to trust good information when it is offered.

I see a lack of authoritative answers from those who have them and an abundance of Experts whose answers are dangerously wrong. I see a new field, Eating Disorders, going in several directions at once and none of them authoritatively.

I know a father in one country whose daughter is dying and he fears for his own life when she strikes out flailing. A mother in another country who travels to a public place just to see her daughter at work, knowing each time that it may be the last. I know a therapist who has had to advise a family on how to give up. A couple whose marriage collapsed because one spouse sided with the eating disorder. A clinic owner who can't use the law to help save a patient's life because the parents will simply intervene in a tragic misunderstanding of what "help" means. A mum and dad who finally got their daughter to a hospital but were kept from seeing her when they were accused of abuse - and are now afraid to feed their child at home. A mother who rescues the daughter long enough for her strength to return and go back to the care of a father who won't intervene.

None of this has to happen. We know enough about this illness to prevent these situations and help these families and clinicians. What we lack is the will to stop allowing, stop paying for, stop vacillating, stop thinking it won't matter, stop being silent. We lack the will to question others in public. We lack standards, grounded principles, a plan.

Sorry. Rant over. Work still on.

February 14, 2011

DC Event with Kathleen MacDonald

This year for National Eating Disorders Awareness Week my friend, Kathleen MacDonald, and I are doing an awareness event together for the first time. One of the benefits of my work is that I get to meet a number of dedicated and passionate people out there who do this kind of work, mostly out of sight, to help the rest of us: and Kathleen is perhaps the most generous and genuinely positive one I know. Kathleen is one of the tireless advocates out there working for free for years to help save lives and improve lives of those affected by eating disorders.

I have had the honor of knowing Kathleen for some time, especially because I support and volunteer for the Eating Disorders Coalition where she is a longtime volunteer and now the Policy Assistant. I also know her through her work for the FREED Foundation. This is a woman who would rather go without a hairbrush than skimp on gasoline to make it to another school on her College tour schedule. And a lovely head of hair she has! This is a brave pioneer who tells her story to inspire others - including our US Congress - to take action. She is a fierce advocate of patients but not a pushover: she means business when it comes to fighting an eating disorder. She means fight!

Yet the thing I appreciate most about Kathleen is that she puts up with me. Even though we don't agree on all the particulars, even though we come at the illness from different directions - she and I have a mutual respect and fondness that keeps us focused on the big picture. I have been grateful for her patience with me, and her willingness to openly discuss things that many people might consider untouchable. I truly believe that THIS is the kind of relationship that keeps us all moving forward. Plus, I really value our friendship just for who she is. Her humor, her grit, and her thoughtfulness.

If you're near DC on March 2, I hope you'll come share an hour or so with Kathleen and I. If you know her, I'd like to meet you. And if you know me, I'd like you to meet her.

Eating Disorders Awareness Week Event in Washington DC

February 13, 2011

Good news from UCSD

I'm so glad that the news of UCSD's Eating Disorder program is  getting out there in the world, and in the literature: An Innovative Short-term, Intensive, Family-based Treatment. This case series points to what dozens of families have told me personally: that they found the 5-Day Intensive program turned around the way their family responded to the illness. That information, that confirmation of their competence as a family, really good clinical assessment, a careful and individualized treatment plan, contracting, and the inclusion of siblings, the realignment of parents - turned around families who had formerly been floundering or repeatedly disappointed.

This illness is hell no matter what. There are no shortcuts, no easy solutions, and no miracle prescription. I continue to believe that if families can find comprehensive, family-inclusive, multi-disciplinary, evidence-based treatment a very difficult time can be saved from being a tragic one. I applaud UCSD for being innovative in caring for families who are caring for their ill loved ones - and basing that innovation on evidence not just in one approach but the necessary range of information and approaches.

February 11, 2011

Defining "prevention"

Lot of talk about preventing eating disorders out there. For most people the word prevention means stopping an illness from happening at all. I think that is the only good use of the term, myself. It is what the public means, and what I mean. Preventing cavities or cancer means not developing them at all. It is why you don't hear me talking about preventing eating disorders: I don't know of any intervention known to actually work to prevent the mental illness called an eating disorder. I like to think that we can stop eating disorders from happening, but I see no proof. Furthermore, once an eating disorder has started the talk of prevention starts to sound a whole lot like blaming. "What did I fail to do?"

Here's what parents need to know: the word "prevention" is used very differently in the eating disorders world. As well described here, ECED Debates - Are They Educational?

PRIMARY PREVENTION is what I mean and you probably do, too. Preventing the eating disorder from happening. Even for those with a predisposition, not developing the illness at all because preventive measures are in place to keep from tripping the wire.
SECONDARY PREVENTION is "early detection and treatment of an illness with the preventive goal of avoiding chronicity and irreversible complications" I call that early intervention and treatment, not prevention.
TERTIARY PREVENTION is "rehabilitation whereby damage caused by the illness is reduced as much as possible and intact functions are preserved." Again, that to me is treatment for those who were not caught early and properly treated.

But, to complicate matters, there is another set of uses for these terms! Hold onto your hats.

PRIMARY PREVENTION is often used to describe community-wide prevention work, while SECONDARY PREVENTION is called "targeted" prevention as it focuses on people considered at particular risk.

Somewhere in here, in the headlong and well-intentioned efforts, is also a confusion of ideas: disordered eating and eating disorder; and body image distress and Body Dysmorphic Disorder. There is an assumption that preventing body image distress will prevent BDD, and that preventing disordered eating will prevent eating disorders. That assumption needs to be questioned as well: do we really know that these are true? If so, how strong is the effect? One kid in 20? One in 1,000? One in 100,000? Not that one in a million isn't a good thing, but is that where our efforts should go? Or is preventing eating disorders the only reason for these efforts?

There's a risk to "prevention" work, and here I'm only talking about primary prevention. The risk is that we put our energy into something that isn't working and could possibly be deterring the treatment of those who are ill. What if "prevention" work is holding back families and patients from really understanding the gravity of the illness and the urgent and grueling work of recovery? What if ideas about prevention end up sounding more like "stop thinking that way" and "society made you ill so you can't get well until we fix society."

This is unpleasant negativity at a pleasant party, I know. Many of my friends are very focused on primary prevention and many former patients have found it very helpful in their recovery. I'm actually ALL FOR the positive body image work, myself, but NOT for the prevention of eating disorders. I want an end to dieting because it is unhealthy and masks eating disorders and may, in some cases, trigger an eating disorder that otherwise would not have happened. But I don't see any evidence that primary prevention - and that is the only place the word prevention should really be used - is effective. Let's do it for its own sake, and work together to better use the information we DO have about eating disorders, and focus our energy on getting more information.

February 10, 2011

Couples and Anorexia

I yammer on about parent involvement in treatment because I'm a parent and in most cases that's the best option a patient has. But, it isn't the only option and I'm very excited about the prospects for expanding the caregiver concept. Spouses, for example:

Couples and Anorexia

Yes, we all want this guy to marry our daughters!

Also interesting, the UNC program for spouses: UCAN.

February 9, 2011

Researcher seeking anorexia nervosa patients for study

Perfectionism, Self-Injurious Behaviour, and Functions of Anorexia Nervosa
Research Participants Needed!!

§  Current, previous, or suspected diagnosis of anorexia nervosa
§  15 years of age or older
§  MUST have parent or guardian permission to participate if under the age of 18
§  Ability to communicate in English at the 4th grade level

§  An online survey asking questions about:
§  Perfectionism
§  Self-Injurious Behaviour
§  Pros and Cons of Eating Disorders
§  Attitudes Related to Eating and Other Related Behaviours

§  Any computer that has internet access!

§  At your convenience!
§  Approximately 30-45 minutes

§  To help the community and researchers understand eating disorders better
§  To help a Master’s student obtain their degree
§  A chance to win a $100 Visa Gift Card! Anyone who completes the survey will be eligible to enter a draw for a $100 Visa Gift Card. The exact odds of winning will be dependent on the number of responses, but chances will never go below 1/150!

Confidentiality will be maintained throughout the course of the study

For more information contact:
§  Nicklaus Csuzdi (Choose-dee) at csuzdi.masters.thesis@gmail.com
OR 1-519-824-4120 ext. 54822

"fitness" is secret ladymagcode for "neurotic thinness"

Is there a Pulitzer prize for getting it ALL right in one page, sparkling with wit and appropriately seething profanity?
They promise to tone, transform, fix, and whittle your body, but all women's fitness magazines really do is help you lose all that flabby self-esteem you've spent years accumulating. How are they bullshit? Let us count the ways.
Why are we accepting "Women's Health" magazines like a dog pill slathered in peanut butter?**

Why do we march our groceries AND OUR CHILDREN by this profane self-loathing?

Read, chuckle, cheer, and ask yourself why this stuff gets produced and bought and what you're not doing about it.

** For some reason some people can't click through on that link and it goes kerfluey on them. Try cutting and pasting this:  http://jezebel.com/#!5753287/womens-fitness-magazines-are-bullshit

The Hidden Tragedy of Isabelle Caro's Mother

Please read, comment, re-tweet, my most recent Huff Po post? The only way to reach families is to make sure they can find us:

The Hidden Tragedy of Isabelle Caro's Mother

February 8, 2011

Facebook and Eating Disorders: Ambiva-like-ness

Man, I wish I was still in graduate school. How much more fun it would have been with the Internet! Heck, you can even get your dissertation to go viral on the Internet without publishing it! And doing research  without even going to the library or dealing with the Interlibrary Loan Librarian...bliss.

Listen, my graduate degree is in "Social Dimensions of Natural Resource Management," so who am I to talk, right? A Master's in Ecotourism may sound flighty now, but at the time it was very exciting (to me and my long-suffering family and advisor). But, let's talk. If your research consists of gathering data from Facebook you are certainly cutting edge but the fact that the media will automatically LIKE it may skew its significance, no? My news feeds were clogged this week with articles all over the world about how Facebook "causes" eating disorders. Drilling deeper it seems that these articles are based on a press release based on a dissertation that has not been published. The conclusions of that study, at least as reported, actually go so far as to say that parents can prevent eating disorders by being more involved in the online activities of their daughters.


OK, let's review. An increased interest in Facebook, a SOCIAL network heavily focused on visual appearance and ephemeral social connections might be diagnostic of a focus common to sufferers of eating disorders, but "risk" and "cause" are not words to throw around lightly. An increased involvement by parents in their children's everyday lives is certainly correlated with healthy families, but hardly a causal relationship - the two come from the same source. Again, correlation is not cause, and changing one aspect of our parenting does not necessarily change the outcomes or predispositions of our kids.

(I won't even begin to belabor the issue of whether you can teach healthy body image or self-esteem and how that relates to eating disorders. Let's just say the relationship is likely not causal. And these are important for ALL parents.)

Now, does it matter if the news cycle gets it wrong here? What's the harm in people thinking that Facebook users more prone to developing eating disorders?  Heck, even asthma can be traced to the evil social network! Facebook is silly and unnecessary, and a waste of time anyway. Well, for starters if you think that closing down your daughter's beloved Facebook is going to prevent her eating disorder you are going to be disappointed. In addition, if you think that what's going on at Facebook is bad, don't try to imagine the school, the gym, and the minds of eating disorder patients. Shutting down the outlet doesn't get rid of the problem.

This is a mental illness -- a brain disorder -- not an appearance or a behavioral problem one catches or creates. Eating disorders aren't a diet or a desire to be thin - thought they may look that way. I'm interested in a development about Facebook using NEDA Facebook using NEDA to help them find worrying content - which could be a good thing. Not that identifying people with eating disorders and telling them so will necessarily help the sufferer (I don't believe it will), but I do believe it is a good idea to not normalize disordered eating and behaviors in public - and Facebook is mighty public. It is a good idea for us to recognize mental illness and not mistake it for personal choice - but that's not happening with this coverage or, so far, the reaction. Just more misunderstanding and misplaced blame.

But, oh so easy to Google and Twitter and cluck and pity.

68-year old duck!

I'm sure I've shared this one before, one that even the best have said is the best tap dance sequence ever filmed. The Nicholas Brothers were supreme. I see something new every time I watch it. But this time I'm especially interested in one guy that in a hundred times I never noticed. The sax on the front row right, look at about minute :34 for the first time, who ducks as the fine Nicholas feet fly over and around him. Everyone else is cool and collected, not even noticing, blowing away. This guy is worried! He's concerned. I'm sure the director told him to sit still and the musicians must have done enough takes to know that neither Fayard nor Harold misses a beat or lands a dimes-breadth away from where they're aiming, but Mr. Sax isn't taking any chances.

And yes, that's Cab Calloway. Dreamy stuff. I was born in the wrong decade. Well, except for the war and the lack of Internet...and that it would have been illegal in most states for my parents to marry.

February 7, 2011

Lobby Day April 2011

American families! A date has been set,  and it is your turn to go:

Lobby Day April 2011

The Eating Disorder Coalition puts on two Lobby Days a year for us, families in the US affected by eating disorders. They do this on a shoestring budget and years of relationships on the Hill. They aren't asking for our money or our applause: they need us to show up with a message of your story. The way the system works isn't about money it is being there.

The EDC makes it simple and makes the appointments. You work in a team of others from your state, and you tell your story. What eating disorders have done to you and your family, and why the laws around it matter to you. I've seen a Senator choke up, a Congressman hug a crying mother. I've seen a single meeting result in a new Sponsor for a bill. I've seen Congressional staff go from formal to fired up - just by meeting a real person affected by an eating disorder.

EDC's staff is friendly, organized, and deeply knowledgeable about how Congress works. You will feel supported and empowered in their hands.

Consider it! 

February 6, 2011

Bone deep

I don't know that it helps motivate patients - they're often dealing with intolerable conflicting demands on their thoughts - but I know parents are quite interested in the longterm effects of malnourishment. Unfortunately, a lot of the problems of eating too little are invisible, but not necessarily benign: Premenopausal osteoporosis, an overlooked consequence of anorexia nervosa: "Women gain 40% to 60% of their bone mass during adolescence, a time coinciding with the peak incidence of anorexia nervosa, and they attain their peak bone mass by the time they are in their 20s."

February 5, 2011

Blame It on Winter

I love a unified theory that brings together some of my favorite topics:

Blame It on Winter: Newborns' Exposure to Daylight Affects Mental Health for Life

And now I'm thinking, how often did I get my babies outside?

February 4, 2011

Well, that depends

Should a parent listen to the advice of treatment professionals?

Usually, the responsible answer is "yes." The responsible thing for me to say to any parent seeking help is: "get expert advice." But let's be straight here: it all depends on how close the professional is to being right and they are all over the map. If the person you are consulting knows what they are talking about and is using the best information available and applying it appropriately to your particular situation then listening to the professional is the right thing to do. But if they are not, and many aren't, it is irresponsible to follow that treatment advice. How do we know the difference? We are laypeople: inexperienced, shocked to be in the situation at all, and generally clueless when we begin. And scared.

I've observed that at least half - probably more - of the professional advice about eating disorders that a family will find is dead wrong. I mean that literally, as these are life and death matters. Most families will be offered incorrect, inadequate, conflicting, distracting, and out of context advice along the way. They will rarely hear the same advice twice as they go from doctor to therapist to dietician to coach to guidance counselor to social worker - most won't know much, some will know a lot but it will be outdated, and there are even those who are leaders in the field still very tied to ideas that are demonstrably wrong. I find the chances of better advice and support increase with certain factors:
Chances decrease when:
  • Local providers apply their skills in other areas of health/psychology/nutrition to eating disorders without getting specialized training and experience.
  • A self-appointed expert develops a reputation for a socially attractive idea around EDs - usually by writing a book
  • Patient's family has no money for healthcare
  • Patient's family has A LOT of money
  • Patient's healthcare system only offers care in extreme situations or in one-size fits all
  • Parents with a great trusting relationship with local doctors and therapists with no ED training
  • Bad luck

February 3, 2011

insatiable desire for prediction and control

Parents are often chided and patted on the head for demanding answers and not taking "we don't know" for an answer.

So I guess the question is whether this is normal and indeed expected for a parent facing such a monstrous illness or whether we share some traits with our kids:
"insatiable desire for prediction and control with related intolerance for uncertainty"

I'll cop to some of that, but I still think it is natural faced with a real emergency and an unclear and underpowered clinical response. Here's an experiment I'd like to try: what if parents were immediately believed when they suspected an eating disorder, were referred to a range of choices for appropriate and effective care without delay, and there were alternatives if those interventions weren't sufficient. Then let's see how insatiable and intolerant we were. Then lets take some families with kids with eating disorders and swap out their kid's illness for, say, pinkeye or nits, and see if their response is just as extreme.

Sadly, neither of these hypotheticals are possible, but I don't know a parent facing an eating disorder that wouldn't be willing to give either of those a shot!

February 2, 2011

oxytocin should not be used for recreational purposes

A Love-Hate Relationship?: "Feel-Good" Oxytocin May Have a Dark Side

Backward and in heels

There's a delightful snarkiness in saying that Ginger Rogers did everything Fred did, but backwards and in heels.**

But I've learned something interesting. It is actually easier to tap backwards and in heels. At least for me.

The backwards thing because it is like falling - far easier to fall back than forward, right?

The heels thing I've just learned because I rewarded myself with my first pair of heeled taps for the new year. I adore them. I thought it would be hard to adjust and harder to dance but no, sir: it's a delight. Perhaps because I'm already up on the balls of my feet, or because the smaller heel tap balances better. I don't know.

Sad to say, I'm going backward in terms of tap fashion. Women aren't wearing heels as much, except in Rockette style dancing, which interests me not at all. I'm actually far more interested in rhythm tap than broadway, and of the little pictures I cut out of dancers to tape on my wall most are actually men.

But I like heels, and I have always envisioned getting to the point of tapping in heels and I'm just loving it. Who says you can't keep growing up, even at 49? I'm just getting started!

**attributed to a number of sources but probably from an old cartoon.