January 31, 2010

Maybe Descartes had a point

I met two women the other day with a similar complaint. Both reported the experience of having daughters diagnosed (and hastily referred elsewhere by the doctor) as anorexic because of a low body weight and no other symptoms. Both mothers were annoyed by the experience. It would be so helpful if the public and especially doctors stopped seeing an eating disorder as a weight problem.

Bear with me, because this isn't what you are hearing everywhere, and it is complicated: People who are constitutionally of low body mass aren't ill, nor are those who are "traditionally-built." People suffering from malnourishment for any reason need healthcare, whether they are suffering from a mental illness or not. People suffering from artificially high weight due to medical or psychiatric problems need attention to those health issues, but not in some simplistic goal of changing their weight.

Anorexia isn't low weight. High weight isn't an eating disorder.

Altered weight can be an symptom of one stage of anorexia, as it can be a symptom of a stage of binge eating disorder, but the distinction is important. Most of the suffering of any eating disorder goes on at average weight; weight can't be sole or primary diagnostic tool. The suffering is mental: emotional, cognitive, interpersonal, attentional, proprioceptive. Most of the effective treatment needs to go on at so-called "normal weights" as well.

We need to intervene and remain engaged in the treatment of our loved ones with mental illness at all weights. This is an underlying brain disorder, not a weight problem.

January 30, 2010

Regardless who constitutes your community

Parents, parents, parents - I'm like a broken record. I'm all about patients getting help from those most likely to be their allies, committed to them, ready to help. Parents are designed for that. But not everyone has parents ready willing and able.

But the point is to get others to keep you supported and safe, whoever it is:

Mark Warren says it best: The Importance of Community in Eating Disorder Recovery

January 29, 2010

Medication and Bulimia

A newer blog takes on a really important issue: Medication and the Treatment of Bulimia Nervosa:

My favorite quote: "In no situation should medication be used alone for bulimia"

January 28, 2010

Knock it off!

"Family influence on disordered eating: The role of body image dissatisfaction"

Oh for goodness sake, let's give it a rest!

Parents have an influence on their children. Bad parenting isn't good. Setting a bad example is bad. Haranguing one's children is bad. Enough.

But body image dissatisfaction is practically the altar of modern life and parents who DON'T influence their children toward so-called "healthy eating" and a pursuit of thinness are reviled and ridiculed. Better we should spend our time trying to support parents in bucking the societal tidal wave toward self-loathing and thin-worship than scolding parents for buying in.

And, need I remind you, disordered eating and body image aren't good for ANYONE, whether they have an eating disorder or not.

January 27, 2010

Superstition

An all too common trope around anorexia and bulimia is that they are "about control." This is meant to convey that people choose to control their bodies as a metaphor for control over other things. I don't agree. My interpretation is that a feeling of lack of control is very distressing and ED behaviors have distinct biological effects -they give the person, falsely or not, a feeling of control - because restricting, binging, and purging all serve to temporarily reduce anxiety.

In other words, I would change the phrase to: "eating disordered behaviors are a biological self-medication for distress about losing control, a fear that may or may not be related to actual loss of control." But that isn't as catchy.

How a Lack of Control Leads to Superstition is fascinating because it reminds me of the way certain ideas become dogma in the eating disorders world. I see society's worship of thinness and the (repeatedly disproved) faith in weight loss as the path to happiness, virtue, and success as superstition. Since the behaviors that are sold as weight loss methods have the collateral benefit of a dose of false control and superiority this is a particularly dangerous superstition. A person feeling out of control - biogenic or psychogenic - is going to be particularly gullible to superstitions of all kinds, including the idea that less food is better, or that eating disorders are "all about control."

January 26, 2010

What will it take?

What does it take to turn the tide of misguided "health" measures?

The-F-Word.org and Jezebel are willing to find out. So is Irishup. So am I. Let's do it!

COMMENT on Whole Foods policy.

Failure to speak up is a statement. What are you saying?

Talk to me

I have a rule. In my work as an activist in the eating disorders world I do not correspond with people who are current patients. This is also a rule we maintain as best we can on the Around The Dinner Table online forum. I don't know of anyone else who has this rule, but I'm going to explain my policy about it and encourage others to give it some thought. It might be better for patients everywhere if we all put better boundaries around contact and put our energies into getting family and friends and communities what they need to offer real and accountable support.

I don't talk with current patients because I believe what I say is filtered through ED, as is what they say - it's a house of mirrors. I believe patients deserve help and support from real people with real influence in their life: family, clinicians, community and not the false support of anonymous strangers. I believe those who offer advice at a distance risk being a distraction from real help, and risk being used by ED. I believe ED is an anosognosic condition where the patient isn't choosing a distorted and blinded view, and I believe the only true outside help can come from those who can actually see reality in real time. All else is extra, and risky.

I would not have wanted anyone I didn't know to be counseling my daughter when she was ill, possibly validating her fears or offering old ideas about eating disorders.

I don't talk directly to patients because I refuse to overstep the boundaries of a stranger. I feel strongly that no one should intercede - even virtually - between a patient and their care team. I refuse to be used by ED to deflect, distract, palliate, or comfort.

And this: I think we risk doing it for OURSELVES and fooling ourselves into thinking we're helping when we're not.

You might think that my policy saves me grief, but it doesn't. It is painful. Some of my favorite people had eating disorders, let's not forget. The reality of telling someone "I care but I choose not to help you directly" is just lousy, especially when I know that they'll move on to someone else who will with good intentions do just what I've said I will not do.

The response to my rule is rarely good, as you might expect. It runs the gamut from "That's okay. I expected that. I don't deserve help." to "You f**** b***** you don't care!"

Not that one contact deserves more attention or grieves me less than another, but one last week was more painful because of a circumstance I knew about more personally. There are complex situations where people who are caring for someone realize they also need care. And yes, it is a judgment call. If I know the caregivers and we are all in touch then the situation is more nuanced.

What I do say is that I will talk with ANY caregiver. I will offer information and encouragement and help find local resources. I feel the most effective thing I can do, and really the only thing I have a right to offer, is support to caregivers. Occasionally a current patient will put me in touch with a parent, and I think that is a precious and brave act.

But I want to say this: I care. Believe me. It hurts so much to put limits on showing that, but it would be inappropriate and ultimately self-serving. There are people in everyone's life that can and will help in real life - personal or professional. If you really are in a place to ask for help, you wouldn't be contacting me - you'd be going to those people. Contacting a stranger who can't see or really help isn't reaching out - it's delaying reaching out.

Please reach out. Of course you deserve it, and you would try to get help for someone ELSE in your position. If you feel undeserving imagine someone you love feeling that way. If you feel no one will care know that humans aren't built that way. If there is a part of you that can slip a note to a safe person or safe harbor let that person do it for a while.

People care. You mean something - you have a name, you are alive, you have value.

January 25, 2010

Biology-based diagnosis

So, so, so important:

Brain Scan Offers First Biological Test in Diagnosis of Post-Traumatic Stress Disorder

I cannot imagine how different it would be if we could see brain disorders in a clearer way. For diagnosis, for measuring the effectiveness of treatment, and to clear away the public's misconceptions of mental illness!

PTSD is brain damage, and it deserves to be seen as such. Too many people suffer without appropriate treatment and support because people think it isn't real or that it represents weakness or a choice!

January 24, 2010

ROAED conference

PRESS RELEASE

Rochester Adolescent Mentoring Service (RAMS) and Reaching Out Against Eating Disorders (ROAED) are proud to Present "Journey to Hope", a conference for parents, spouses and other loved ones of those suffering from an eating disorder. The event date is Saturday, March 20, 2010 from 10:00 A.M. to 5:00 P.M. at the Lighthouse International Conference Center, 111 East 59th Street, New York, NY. Registration deadline is February 20, 2010 Tickets $125 per person, lunch included. To register visit http://www.familymentors.org/.

The purpose of this conference is to bring together family, friends and other loved ones of those suffering from an eating disorder to empower and remind them that they are not alone. The freedom that comes from an awareness involved with caring for yourself, as a person, also sets an example for your loved one. You can survive this difficult time!

Join us for a refreshing and new educational outlook on the recovery process. Keynote speaker, Judith Ruskay Rabinor, Ph.D., a well known clinical psychologist, author, consultant and psychotherapist specializing in eating and body image disorders is followed by other vibrant and progressive specialists in the field of eating disorders who will discuss tools for self-care, family preservation and coping. This conference also features a theatrical performance depicting real life struggles for those with an eating disorder, gender specific interactive group workshops and a creative arts therapy session.

For Questions Contact: Ellen Schieren, (212) 935-2015 or eschieren@roaed.org

To register visit http://www.familymentors.org/

January 23, 2010

Share Your Eating Disorders Insurance Stories

Share Your Eating Disorders Insurance Stories

"Have you battled your insurance company for coverage of an eating disorder?"

The National Eating Disorders Association in the US (NEDA) is creating a database and needs you!

January 22, 2010

Above the genome

Say what we will about the media, sometimes a mainstream piece will really explain and clarify important knowledge.

Epigenetics, DNA: How You Can Change Your Genes, Destiny is wrongly titled (makes it sound like a self-help, fix-your-genes-in-30-days-or-your-money-back scheme) but contains just enough information for laypeople to understand epigenetics and how it could help us understand so much:

"if the genome is the hardware, then the epigenome is the software"

January 21, 2010

Wanted: Your recovery stories

Rachel over at the F-Word blog contacted me yesterday to invite parents to add their recovery stories to her project. She's looking for a range of experiences and approaches, and from caregivers as well as patients. Go check it out!

Wanted: Your disordered eating recovery stories » The-F-Word.org

January 20, 2010

Just food

I was surprised, and annoyed, by a curt comment on a recent blog post. Yes, Laura does think of other things...:

"FBT is not just food."

Annoyed because that's usually the point *I* like to make and having spent so many years repeating myself I was sloppy to leave that unclear. A blog post has to stand alone and out of context so the commenter was right to call me out.

The truth is that FBT/Maudsley is one of my interests but I hold opinions that should not be taken as having anything to do with FBT/Maudsley. I, for example, believe eating disorders are a brain disorder and that the symptoms are set into place by malnourishment for a genetic minority predisposed to do so - but that is not something that necessarily goes along with FBT/Maudsley; FBT is "agnostic" on cause. I believe food is the more important active ingredient of FBT/Maudsley, but that is not a belief shared by all Maudsley proponents. I'm a believer in parent empowerment and alliance as a tool for recovery but I think of that as skilled parenting as much as it is a treatment approach. I believe the LACK of harmful ideas that characterize most approaches to eating disorders is a confounding factor that favors FBT, but again that is not necessary to understanding FBT/Maudsley. It would be a mistake to critique FBT/Maudsley based on my beliefs about the method or my other ideas. Or to hold me up as a standard-bearer. I think Family-Based Maudsley is a great option but not the last word on eating disorder treatment. In fact, I advocate improvements to FBT/Maudsley to address its shortcomings.

But I was also uncomfortable because the comment gets to the nub of the problem that I find so frustrating. In my post I was, clumsily, trying to say that I don't think FBT/Maudsley is the only idea out there we should be looking at but that ALL treatment must be pursued IN ADDITION TO THE FOOD.

All eating disorder treatment should include assertive and non-optional nutritional rehabilitation and the cessation of binging, purging, and compensatory exercise. Any psychological treatment that leaves out concurrent refeeding is, in my opinion, both ethically and medically wrong. FBT is not just food but other approaches should not be going on without the food.

Food is medicine, and not "just" with FBT.

Strep Today, Anxiety Later?

I believe any parent with a child with sudden onset OCD or eating disorder symptoms deserves to know about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). Unfortunately, it may take a great deal of work to get one's doctors to consider it. One family I know had to drag a doctor into doing the testing (not for strep, but for the antibodies of a recent infection) despite a family history that was well-documented and the fact that one of the parents was a respected physician in another field. That family's doctor became a believer overnight having seen the test results. I'm hearing more and more of this, and have encountered a growing number of families who are insisting on having a child tested.

I've been disappointed to hear from leading eating disorder researchers that they doubt the connection. Even a leading proponent of the theory believed the PANDAS cases she was documenting were only a small subset of all eating disorder patients. But what strikes me is that we have a field where everyone has far too high a level of skepticism about things that have not been studied in a field where too little has been studied at all and MOST of what is being practiced has no research to support it. This is an area where we don't know what we don't know, and certainty is probably ill-advised.

From Throat to Mind: Strep Today, Anxiety Later?

January 19, 2010

Rights and dignity

Carers and clinicians must struggle with the necessary tension between listening to the patient and listening to the patient's needs. But always, always with "rights and dignity."

She will be missed, but not forgotten: Advocate For People With Mental Illnesses Dies

January 18, 2010

Yes, Laura does think of other things...

You probably think I live, eat, dream, and drool the Maudsley approach, right? Well, I talk most about that because I'm addressing what families can do, because it is the only really well-studied approach, and because it works. I also talk about it because too few other people are doing so.

But the truth is I'm really interested in a lot of ideas out there that may be helpful in treatment IN ADDITION TO THE FOOD.

Acceptance and Commitment Therapy, for example. Cognitive Remediation Therapy, too.
Dialectical Behavioral Therapy, and of course Cognitive Behavioral Therapy.

I still also hope that new information on things like leptin and ghrelin, norepinephrine and serotonin, the insula, hypocortisolemia, PANDAS, autoimmune disease, and vitamin/micronutrient metabolism will lead to medical interventions that will help or even cure this condition.

January 17, 2010

The First Lady around the dinner table?

Naturally, so glad to see First Lady Michelle Obama "around the dinner table":

"The other thing that keeps you grounded are kids because when you sit around the dinner table, and Barack starts talking about anything, essentially they're just waiting for him to shut up until they can start talking about what they think is important. Which usually has nothing to do with the 'bigness.' Our conversations are still about friends and school and the general observations about life that kids who are 11 and eight have."

I love it. Kids keep us real, no matter who we are!!

January 16, 2010

"Gives me hope"

a comment on the Around the Dinner Table forum last night:

"Great program, Laura and all!!

Yes, Laura, I loved hearing your d call in and especially her signing off 'I love you, mommy!' How wonderful for those of us who have not heard those words in many months. Her admiration and support of you and Family Based Treatment came across very clear. Gives me hope.

MJ"

The show is available on tape: FEAST-ED.org

Oh, and I love you, too, sweetie!

January 14, 2010

Lunch with F.E.A.S.T. - Happy New Year!

Lunch with F.E.A.S.T. - Happy New Year!

Join F.E.A.S.T. for lunch!

A live call-in radio show this week where you can call in from around the world to talk with F.E.A.S.T. Board members and ask questions about the history and hopes of the organization and the world of parent activism. Learn more about eating disorders and what parents can do!

January 15, 12 noon Eastern time in the US.

Call in by phone or on line, listen online as well.

WRITE YOUR QUESTIONS IN ADVANCE IN THE COMMENTS HERE - WE'LL READ YOUR QUESTIONS ON AIR!

(Show will be recorded and available online after taping.)

January 12, 2010

"a particularly American view of the self"

Jacques alerted me to this, then Sarah, then Kristina, and now I'm pleased to say everyone seems to be reading and talking about it:
The Americanization of Mental Illness, NYTimes.com

It's the perfect storm of my interests: mental health and cross cultural issues with some Chinese thrown in as well. (What, no tap dancing?)

I've been interested in Lee's work on anorexia for some time - though what I take from it is further evidence that the underlying brain disorder doesn't involve body image, it exploits it. I don't believe mental illness spreads; I think the form the cognitions take depends on the environment of the sufferer. For example, obsessive compulsive disorder is an underlying brain issue but the particular focus of the sufferer's thinking has to do with their unique experiences and values and that of those around the person.

There are two aspects here: the experience of the sufferer and the interpretation by those around the sufferer. The symptoms are certainly influenced by culture, but the response by those around the patient is far more tied to society's ideas. With eating disorders we're talking about ideas and myths and implications involving every facet of development and social relations and the body - everybody has an opinion. This illness has "meaning" to everyone whether they understand it or not. My work is mainly around changing the way the world outside the patient responds to the patient, and I do see great differences between cultures but also between classes and families and individuals and IT MATTERS.

Americans are held back by certain assumptions we make about how people "should" think about illness, but I think our greater mistake is in assuming that other people are starting in the same place as we are. Guilt and Freud are destination number one for Americans, but that isn't true everywhere. Neither is our terror of ambiguity - we want an answer, on Oprah, fast and fat-free and paid in advance with repentance and apologies. Not everyone needs the same myths busted.

Mental health is an incredibly complex issue even if you remove cultural baggage and assumptions but somewhere in this complexity are some facts, and some fallacies. Perhaps the better question is not whether mental illness differs across cultures but "What myths about this condition are hindering recovery in this culture?" and "What truths about this condition will help this person's family and treatment providers support them best?"

There isn't going to be an American answer to eating disorders or mental illness, nor a Chinese or Bengali one, but that does not mean there are no answers. People may or may not be helped by knowing that their condition is based in the brain, but it is true or it is not. People may not like the ambiguity of there being an environmental aspect to mental illness - it confuses the issue and it is messy - but brains are by design highly sensitive to the environment and don't operate in a black box.

January 9, 2010

January 8, 2010

Toss the scales and shred the BMI charts... well, unless you are a boy

Just yesterday I was gnashing teeth and venting spleen on two successive phone conversations on the recurrent problem families have with their own health care providers who declare little Susie quite well and ready for independent living based on charted weight measurements while Susie's parents cower in deference to medical advice with rising alarm. The parents know all is not well, but have nothing to base it on but parental intuition - a measurement that ranks with astrology charts and "I heard it on a commercial" as far as credibility.

I truly believe we are consigning another generation of eating disorder patients to poor outcomes, and a generation of children to misery and ill health, based on unforgivably bad science.

It is long past time that we stop using the crude and demonstrably weak measures of weight and BMI, but of course we need an alternative. One that asks the body itself "are you full yet?"

An alternative:
Predicting the weight gain required for recovery from anorexia nervosa with pelvic ultrasonography (full text available online)
Eur Eat Disord Rev. 2010 Jan 7;18(1):43-48. [Epub ahead of print]
Allan R, Sharma R, Sangani B, Hugo P, Frampton I, Mason H, Lask B.
Department of Radiology, St Georges Healthcare NHS Trust, UK.

Target weights are an arbitrary means of determining return to physical health in patients with anorexia nervosa (AN) and lack reliability and validity.... In our sample was a wide variation of WfH ratios and BMI percentiles at each grade of maturity. This supports the view that arbitrary targets for weight, WfH ratio or BMI percentile are likely to be unnecessarily high for some patients and too low for others. We recommend that targets be based upon baseline pelvic U/S grading and follow-up scanning.

No, can't use it for boys. But maybe we can, by using reproductive maturity instead of weight, learn useful things about diagnosis and early intervention and other recovery markers that will help us better serve male patients as well.

January 7, 2010

Duke announces dates for trainings



Hot off the presses: word today that Duke's Eating Disorder program has published dates for its upcoming parent training workshops:

Click here for the flyer.

Placing the fulcrum

I was offered and enrolled in "Physics for Poets" to fulfill my science requirements as a liberal arts undergrad. This survey course involved such visual aids as shooting a toy monkey out of a cannon to demonstrate trajectory. That'll wake up 200 freshmen half-asleep in an 8:30am gut course!

"Prevention of eating disorders" and getting into arguments with people about it keeps me coming back to another visual: the fulcrum.

I think of the factors leading to a full-blown eating disorder as having a different placement on the lever above. I also think of each person has having a very differently loaded lever. For some people they are designed to fall into a break with reality around food and body as soon as given the simplest cue: a random comment leads to a delayed meal and they're gone. For some people they may need a massive set of outside influences at a particular time and... gone.

The big mistake I see out there is thinking that the illness itself is different once tipped. I see no evidence of that. The core illness doesn't seem to be different if the initial diet/restriction was due to a lifetime of pressure or a bad week. Now, the recovery, that IS influenced by environment. A family that can't respond properly, a lack of well-trained clinical assistance, slow diagnosis, mistaken diagnosis, no diagnosis - these all have an impact on recovery. But let's not mistake that for the illness or mistake the severity of the illness for the way the lever got tipped.

What is "prevention" then? Is it keeping all people from the tipping point? Is it identifying people with the fulcrum too far from the weight? Or can we separate primary prevention (community level) from secondary "prevention" and call the first a good social movement and the second "early intervention."

This matters because a lot of treatment is now focused on talking young people out of "wrong" ideas about food and their bodies and appearance. I have no doubt this will keep a small margin of people from being tipped, and will more importantly offer our whole society a great deal less grief and static. But I sincerely doubt if it has an impact on people who are designed to find that tipping point, or that already have.

January 3, 2010

The setting sun, roll credits

There is so much a parent needs to learn when a loved one is diagnosed with an eating disorder. The beginning is SO HARD and there is so much information and fear and hope and readjustment. But here's a detail for parents that needs to be stated up front and repeated even if you don't want to hear it and it scares you: this isn't a movie. In a movie, the protagonists struggle and evil is vanquished and the credits roll. In real life relapse is always a risk and there is nothing ED wants more than to outlast your energy. Pace yourself. Don't let relapse be an inconceivable thing.

Relapse isn't about doing it wrong, or life never being good again, or never being able to exhale. The risk of relapse is about the nature of the underlying brain disposition. Relapse isn't a slap in the face or a betrayal or hopelessness. Relapse is waiting, and here's my advice:

Plan for relapse. Don't cower and tiptoe or turn your back. ED's favorite phrase "I couldn't bear to go 'back there'"

Trust but verify: keep monitoring in place not because "you don't trust me" but because this brain predisposition comes with a cloaking mechanism. Patients usually can't see the road they are going down until it is too late and that's neither their fault nor should it - in my opinion - be their responsibility without backup. An ED diagnosis means add monitoring to one's lifetime plan: your doctor, your family, your friends, your spouse need to know the symptoms of a returning ED just as an epileptic needs to wear a bracelet. Keep a relationship with an experienced (and progressive) ED therapist wherever you live. Check in every few months, or once a year. Keep them on your holiday card list.

Being able to talk about it isn't a luxury, it is a necessary step of recovery. Parents may want to avoid provoking irritation but I don't think we have finished our job until the whole family is fluent in the mechanics of the illness. Patients, I have observed, mostly hate this. Tough.

Keep learning. ED science is changing daily - there may be new tools and approaches and therapies on the horizon next year, or down the line. We're just beginning to understand this illness.

Normalize recovery. Make it permanent to behave normally around food and activity. The recovery period can't be the only time for family meals and communicating well and lowering stress - that's a lifestyle not a temporary thing. Make a lifelong rejection of dieting, body talk, relentless stress, and un-fun exercise.

Be assertive with the ignorant. Doctors will say stupid things, Aunt Freda will talk about diets at the Thanksgiving table, coaches will wink and nod over missing meals, and teachers will think you are overbearing when you want accountability. Expect this. Do the right thing anyway.

Fall apart. You may do this naturally, but put it on your schedule and congratulate yourself for it when it happens. Most parents are pretty good during the crisis but lose it entirely when they start getting any sleep. This is a time ED seems to love: great opportunity to exploit lowered defenses. So fall apart on a schedule instead. Put cathartic crying, screaming, loud music, and emotional movies on the daytimer. You've earned 'em.

Back off slowly, come back in slowly as needed. It's not a one-way deal: it's a dance. Don't wait for a crisis.

Parenthood doesn't end at 18. The law will try, the media will try, your friends will try to sell you this BS, but don't you buy it. Your rights may be curbed, but not your responsibility. Parenthood is forever.

"No questions asked." This is the promise we made to our daughter: that at any sign of struggle we are going to be there to help, no questions asked, as often as needed.

Nothing but the truth: staying well and weathering storms requires a level of honesty that may not have otherwise been comfortable or necessary. Brace yourself for awkwardness. Sense of humor and humility come in handy here.

"It's not failure, it's feedback" is a favorite phrase among ATDT parents for a good reason. You have to know your enemy and a relapse of behaviors and thoughts offers valuable information needed for the future. Hiding from it doesn't make it not so. In fact, hiding from it nurtures ED.

My biggest lesson from ED: parental instincts are the most powerful diagnostic tool out there. Parents KNOW something is up. Sometimes we over-reach and see symptoms that aren't there, and overreact, but more often our instincts are ignored and disregarded when we knew all along that thoughts and behaviors are drifting toward relapse. We can nurture that ability in ourselves by treating ourselves well, surrounding ourselves with healthy support, and refusing to let ED intimidate us.