February 26, 2010

Parsing disordered eating from an eating disorder

One of my blog's commenters beautifully and concisely described the difference between disordered eating and an eating disorder:

Anonymous said...

Most people who restrict their intake of food find it very difficult after awhile to continue because their biology takes over and forces them to eat more. Other people restrict, however, and their biology responds in exactly the opposite way, signalling them to eat less and less. The first group has disordered eating. The second has an eating disorder. The difference is clear cut and determined by different biological signals. We don't know exactly what those signals are, yet, but we know there are clear differences.

February 25, 2010

"What if your parents are in denial even more than you are in denial?"

I want to thank "Now is Now" for her comment on one of my other posts. Emphasis: mine.
"It took a REALLY long time for my parents to get it. I asked for help on multiple occasions (when I was in college), and they said, "It's a phase." (Despite having friends call them from campus telling them I'm not eating enough). I have commented on your post before, "BUT WHAT ABOUT WHEN PARENTS ARE IN DENIAL EVEN MORE THAN YOU ARE IN DENIAL?!" That was the case for me. And I really just thought that this FBT stuff only worked with parents who already weren't in denial... but it didn't seem like there was anything for people with parents who didn't know anything about EDs. But every since my really amazing therapist got me to agree to let her call my parents.. and ever since she highly suggested my parents fly up to attend a lot of family therapy... and ever since my therapist taught my family how to communicate about this... I've realized that parents can be educated. My parents (like all parents) love me so much. They were just so confused and scared - and hurt (the lies surrounding EDs don't really help). For so long, I thought my parents just were clueless and would never get it. But through parent education from my therapist, etc., my parents have shown me that they have always just wanted to be included... they just never knew how or what to do. They needed to be taught how to be included. And they have been taught. And now they're great. Just a couple of weeks ago, I was feeling a little lonely, and I said to my mom on the phone "I don't know why my food is getting off track, but it is... whatever. I don't care." My mom came up the very next day, stayed with me for 10 days, and we just cooked together, ate regular meals, and had a blast enjoying life. I know I'm lucky to have a mom who is able to take time to visit... but still. Yeah, it's kind of embarrassing that I'm 24 and this happened... but it is what it is...

What is my point here? Maybe to say that 1) Parents just want to help their kid; 2) They can be part of the process, but they have to be taught how to be part of the process... and 3) They have to be taught about EDs. And 4) They want to be able to talk about food and other EDish topics with their kids, but families need help in this sort of communication. The sufferer isn't
exactly articulate at explaining their situation. And the parent doesn't get that.... so the whole communication thing needs to be taught too.

but the good thing is that IT ALL CAN BE TAUGHT.

My story is an example of parents in denial turned parents involved. And, honestly, it has made alllll off the difference. I've been in treatment for 3 years, and the vast majority of my progress has been made in the last 6 - 9 months, ever since my parents became involved.

I know my situation isn't everyone's... but it's something worth sharing maybe... "

Too many patients, therapists, and parents think that if it doesn't happen naturally it won't happen. Patients, whose age and illness tend to reject the help of others, are believed when they say their parents are not going to be able to help or understand - and parents believe it too. Of course there are parents who simply won't and can't - but I believe most will and can but only with information and support and being included.

Bravo to you, your family, and your therapist. I am so moved by the bravery and hard work you all are achieving, and for passing this story on to others who may find direction or insight from it!

February 23, 2010

ED vs. DE

My friend Mary Beth recently reminded me of something important: the distinction between eating disorders and 'disordered eating.' I hadn't been that focused on these semantics but lately I see it everywhere and I am hearing it from more people: we're losing a distinction between eating disorders and disordered eating, at the same time we're blurring the lines between body image distress and body image dysmorphia.

In other words, in a zeal to raise awareness about a mental illness we've co-opted whole categories of human discomfort and distress. This is really a mistake, and threatens two very important goals. The first goal is to help society understand a very serious brain disorder, the second is to reduce a life-sucking drain on our collective mental health. Conflating these two issues is not helpful to either cause, in my opinion.

An analogy: grief and depression. We could probably go a long way toward preventing or lessening depression if no one ever suffered the loss of a loved one. Think of it: no more death. But we can't prevent death, and grief is part of life and the appreciation of life. Dealing with grief in large and small ways is an exercise in living fully and appreciating life. Sometimes grief will tear open a hole into "complicated grief" and depression. Yet we don't speak of preventing depression by banning death or talk of it.

We do this with body image and disordered eating and eating disorders. We think larger fashion models and positive role models and loving our bodies will prevent body dysmorphia and eating disorders. I don't think it will, and I'm not even convinced it will do more than blunt the impact. Like death, the struggle for a positive self-image and a good relationship with one's health is part of society and the maturation process. The fact that it goes terribly wrong so often says more to me about the fragility of mental health than it does society.

Confusing the prodrome of serious mental illness with the timeless quest for self isn't helpful to families who - knowing at a gut level something is very wrong - struggle to logically respond to a loved one who shows signs of an eating disorder or body dysmorphia. Re-focusing the search for the cause and treatment of eating disorders on society's issues may feel good, but these interventions are best targeted to those who are mentally healthy.

February 21, 2010

The guts to try

The sad truth: the Family-Based Maudsley approach doesn't work as often with older patients because nothing works as well with chronic sufferers.

And because we don't have the guts.

Yet a growing number of families are doing it sucessfully anyway and a growing number of clinicians are supporting them.

Let's ask ourselves: which parts of the Maudsley approach don't apply to all patients:
  • Food is medicine.
  • Parents don't cause it, patients don't choose it.
  • Patients need tremendous amounts of support.

Spring cleaning

We had a series of unfortunately coincidental weather issues here in Virginia and three WEEKS without a full day of school. The drifts are still high, but it is starting to thaw and I'm in the mood for spring cleaning! First, I'm shoveling out the list of all my blog post drafts for the past few months that never got finished:

My two favorites, and both deserving of their own posts if I had the time:

  • Finally, a protocol for PANDAS assessment: PANDAS and anorexia nervosa-a spotters' guide
  • February 20, 2010

    Muscles and Pounds Fuel

    What shocks me about this is that it shocks people:

    New Muscles and Pounds Fuel Tanith Belbin’s Ice Dancing

    What surprises me in a good way is that this article makes a distinction between "eating disorder" and "disordered eating." I really wish everyone would. They are not the same thing, and conflating them leads to all manner of weak thinking out there about causes and treatment. Disordered eating is unhealthy and way too common. An eating disorder, however, is a mental illness. Yes, disordered eating can trigger an underlying eating disorder, and disordered eating serves to maintain the eating disorder, but they are not the same thing.

    February 19, 2010

    ACT family-based skills study at Duke

    Duke Eating Disorders Program --Treatment Study for Adolescents.

    This is a collaborative study between Duke University Medical Center and Towson University. The aim of the study is to develop and test a family-based intervention that combines established eating disorder treatment components with Acceptance and Commitment Therapy (ACT). The family-based intervention, based off of the Parent Skills Curriculum - Off The Cuff (C.U.F.F.), is a unique skills-based program designed to teach parents skills to manage eating disorders in their children. The program teaches behavior management skills, emotion regulation skills, and “anti-perfectionism” skills so that parents can not only help their children manage their disorder but help them to learn strategies to help prevent a relapse of symptoms. Parents in the study receive this curriculum, which has been modified and enhanced with ACT principles and strategies.

    With this study, we are trying to learn the most effective way to treat an adolescent’s eating disorder and how best to involve parents and caregivers in the process. Because parents and children have different concerns and are struggling with different aspects of the eating disorder, this treatment involves separated family treatment. Duke is currently enrolling families in this treatment study for adolescents with anorexia nervosa, both threshold and subthreshold cases appropriate. Participants receive 6 months of psychotherapy at no cost and complete 6 months of follow-up assessment for which they receive monetary compensation. For more information, please call (919) 684-0149 or email edresearch@duke.edu

    February 18, 2010

    "it's not their fault"

    I've written and deleted a number of introductions to this link but really, the article - and the man - says it best:

    The Man Who Looks Inside Anorexics' and Bulimics' Minds

    "It's not their fault"

    Not the patient's fault, not the family's fault, but with all working together this is a treatable condition. People like Dr. Kaye and the others quoted in this story give me tremendous optimism for the future of treatment and the families who will benefit.

    February 16, 2010

    New personality test: how many people forward you this headline this week?

    There are some headlines that scream "forward me." Then there are the titles that scream "forward me to all the people who are grumpy about forwards."

    Grumpy people may be more evolved

    February 15, 2010

    Bravo, bravo!

    Classification of eating disturbance in children in the DSM:

    "The consensus opinion of an international work group of experts on the diagnosis and treatment of child and adolescent eating disorders is that (a) lower and more developmentally sensitive thresholds of symptom severity (e.g. lower frequency of purging behaviours, significant deviations from growth curves as indicators of clinical severity) be used as diagnostic boundaries for children and adolescents, (b) behavioural indicators of psychological features of eating disorders be considered even in the absence of direct self-report of such symptoms and (c) multiple informants (e.g. parents) be used to ascertain symptom profiles."

    Translation: in this proposed change to the DSM kids would not have to become irretrievably ill before they get the diagnosis and treatment advice they need, and parents would be a recognized part of the early warning system.

    Hugs

    Given my interest in the relationships between autism and anorexia I was personally touched by this: Hormone offers new hope in autism research.

    Ever since our kids were babies our family has jokingly refered to hugs as "oxytoxin." "I need some oxytocin" means "I need a hug."
    Why? Because we hang out with midwives, and oxytocin is the hormone associated with stimulating labor and nursing and bonding. It is the hug hormone, the empathy builder.
    Oxytocin is released when people are caressed, massaged, shake hands. Swaddled, wrapped in blankets... are you getting where I'm going with this? Human touch - something that people with mental health issues often get less and less of as they grow isolated. Human touch - a thing children get most from their parents. Something adolescents often reject from their parents. A human need, but one that the tactile sensitive person may find excruciating if not done with great care. Hugs, the most obvious drug possible, if sometimes very hard to deliver.

    February 13, 2010

    Provocative Guests

    I was interviewed today on CBS radio on the Dom Giordano show. They promise "provocative guests" and I guess I was it this afternoon.**

    I'm not sure who was provoked, but suffice it to say he and I did not agree. His topic was whether the First Lady was right to bring up her children's weight. My topic was "focus on health and not weight." Neither of us changed topics or answers.

    Dom thought the only reason to stop framing health measures as "obesity" measures was a P.C. attempt to avoid hurting feelings. My reason is that it doesn't work and isn't necessary and it causes harm.

    Here's hoping that someone in Philadelphia heard my message.

    **Bill Cosby, Ron Paul, John Stossel, Liz Cheney, Arlen Specter, Michael Vick.... Laura Collins

    February 12, 2010

    The last word

    I've been battered but remain unbowed over the recent attention around my Huffington Post blog. I've worked for years to try to get media attention for parents and eating disorders but it seems that the way to get calls from CNN, ABC News, and the Laura Ingraham show is to appear to mix body politics with national politics.

    I'm sorry to report that my effort to make one small point has been lost, buried, perverted, and exhausted. My point: pursue health, not a body size.

    Our society is so hell-bent on seeing one's body as something that can AND MUST be forced into a certain shape. We see weight as an indication of behavior, will, health, and human dignity so much so that no amount of information or rebuttal or "comment on this comment" will ever suffice. People in the eating disorder world know this kind of thinking is flawed, and are intolerant of those outside it who do not. The intolerance of those outside the eating disorder world is, well, staggering.

    Not that anyone will notice, but I would like to put on the record that I am not, as reported: anti-Obama, anti-American, a right wing nut, a left wing wacko, obese, anorexic, oversensitive, racially insensitive, permissive, over controlling, politically motivated, self-promoting, not caring about children's health, against exercise, a shill for the fast food industry, promoting obesity as a lifestyle, hurting children, coddling children, making excuses for bad parenting, making excuses for my parenting, the reason my daughter got an eating disorder, or an idiot. I'm not accusing Michelle Obama of giving her kids eating disorders or implying President Obama is damaging his daughter's self-esteem. I'm not saying healthy exercise and food are bad, or that sitting on the couch is good. I'm not even talking about eating disorders. I'm just quietly saying one little thing: pursue health, not a body size. And if you can't understand that concept because you think health IS a body size, then I want you to promise me that in five years when this is common knowledge you come back here and apologize to me for your rude behavior.

    I'll give Kate Harding, a wiser and better writer than I, the last word on how it is possible to worry about "Obesity" initiatives but still applaud the goal of increased opportunities for activity and wholesome foods for children. These beliefs are not mutually exclusive.

    February 11, 2010

    .F.E.A.S.T. Will Support You

    Thank you, Mary Sornberger, for your thoughtful and generous profile of F.E.A.S.T. in your EmpowerHer column today. It means so much!

    F.E.A.S.T. Will Support You

    February 10, 2010

    Twins wanted

    My friend, June Alexander, asked me to get the word out in the parent community on the following request. I'm proud to say that I am a contributor to this important textbook project and fully support June and Professor Treasure's work to gather a broad spectrum of experiences for this book. Please, if your children are twins, consider this request:

    Twins who have suffered Anorexia Nervosa, or carers of twins who have suffered Anorexia Nervosa, are invited to share their experience in a new international textbook aimed at educating primary care health practitioners and carers. The book, co-authored by June Alexander and Professor Janet Treasure, will be published by Routledge (UK) in 2011. If you fit the above criteria, and are willing to share your story, please contact June who will arrange to collect your story via email, Skype or phone. Anonymity is assured unless specifically stated. Write to June Alexander at june@junealexander.com
    For more details about June go to www.junealexander.com

    Walk, don't run, to this event

    OK, so I know I went off on a rant about exercise-based eating disorder events a while back, but I'm going to exercise my cognitive flexibility and reject black and white thinking and modulate that message. I've given it a lot of thought and I'm stepping off my high horse (other, ruder, suggestions were made, thank you.). Active events, within reason, bring people together in a positive way, and there isn't a good reason eating disorder events can't involve moderate exercise for healthy participants.

    The NEDA walks, for example, are short strolls and include messages to nourish oneself and not participate unless healthy enough. I know of at least three healthy adult caregivers who have taken on physically challenging events as part of their awareness and fundraising campaigns as well. You may know this one.

    So, in that spirit, I share a flyer I recently received:

    Click on the flyer for more information.




    February 8, 2010

    Binge eating disorder conference

    I wish I could go, but I am going to London too close to the date:

    2010 BEDA National Conference

    "Enlighten. Educate. Empower"

    What: Informational Meeting

    Thursday, March 4 at 1:00pm

    Saturday, March 6 at 12:30pm

    Renaissance Inner Harbor, Baltimore, MD

    www.BEDAonline.org

    Maudsley matures along with the patients

    The Maudsley Parents website has produced an important video that addresses a very serious gap in the eating disorder literature: young adult patients.

    Family-Based Treatment for Anorexia Nervosa in Young Adults

    Due to research drop-out rates there isn't much data at all on what can be helpful for older patients.

    Due to slow and wrong-thinking treatments out there that fail too many young patients and leave them ill, there are far too many patients living with illness that lingers into early adulthood and as their relationships deteriorate and their chance of recovery decreases.

    A lot of the calls and emails I get are from families who missed the early opportunity to intervene and want to know whether they can try Family-Based Maudsley type of therapy with a loved one who is already legally an adult and may be attending college or living independently. Most have been told "Maudsley doesn't work with older patients" and many of them are told this about patients as young as 16. This is a mis-reading of the facts, and often represent those biased against or threatened by FBT. We don't know what works with older patients, but we know for sure that what is currently done has a dismal rate of success. Every month I hear from another family or two who have successfully engaged in Family-Based Maudsley therapy and home-refeeding with older patients.

    All I want is for parents to know about this option - as early as possible. What they decide and whether it is appropriate is up to them.

    February 7, 2010

    People, frankly, expect

    This line, dripping with condescension, says so much about the public's understanding of eating disorders:

    "things that people, frankly, expect somebody to do."

    The state of New York is shutting down its hard-won network of eating disorder clinics because they want to concentrate on obesity and obesity related illnesses INSTEAD.

    This is, "frankly," the problem: that people think eating disorders are the opposite of and in competition for attention with all health conditions relating to weight. They are not.

    Why are we pitting one against the other, anyway? Why would eating disorders - a range of mental illness that includes anorexia, bulimia, and binge eating disorder - need to be ranked by priority with other health conditions? Why one or the other? Why are these two issues competing with one another and not other illnesses?

    ADDED: Here are some efforts to fight the budget cuts

    http://www.legislativegazette.com/Articles-c-2010-02-08-65344.113122_Ortiz_Eating_disorder_services_must_be_funded.html

    February 6, 2010

    No comment.

    Perhaps the best advice I've received this week is this: "don't read it."

    I was unaware of just how much venomous, cruel, heartless, personal, creepy, and incoherent ranting exists in comment sections. I don't know these people. I don't just mean personally, I mean I just don't know what kind of people these must be in person. I've never met anyone who was so nasty.

    Perhaps that's the point. No one behaves that way in person.

    February 5, 2010

    Interview at ABC News posted today!!

    Yesterday was quite a day. I corresponded with White House staff, and was interviewed by ABC news.

    Did Michelle Obama Send the Wrong Message With Obesity Comments?

    Thank you, ABC, and Huma Khan, for allowing me to speak up for so many who really wanted that message to get out there.

    February 2, 2010

    The right response

    Thank you, girl14, for this excellent answer to the sadness of this week.

    What The Eating Disorder World Wants Mrs. Obama To Know

    Talk about self-referential blogging...

    I want you to go to my Huffington Post blog and leave a comment, or twitter, or Facebook, or forward or all of the above:

    What The Eating Disorder World Wants Mrs. Obama To Know

    The way the Internet works is by links and comments and buzz. If you want to reach the people who need to hear this stuff we need to get outside the ED world. Every comment helps!

    Please? The cicadas on ATDT want you to!

    Details, not the whole

    Read this once just for what it says:
    Body dysmorphic disorder patients see details, not whole face

    Then re-read it replacing BDD with ED and face with body.

    Both times you can skip the sentence about not being the same as EDs because of eating behaviors - that's either a misquote or a misunderstanding of EDs.

    The second time note they are looking for subjects with both conditions for further research.

    For the paper referred to in the story: ABSTRACT

    February 1, 2010

    Disconnect

    In the eating disorders world, putting any child on a diet is not only unacceptable but appalling.

    In the eating disorders world, a father referring to his child as "chubby" and commenting on her eating habits is not only frowned upon it is reviled.

    In the eating disorder world a mother who felt her children were "perfect" should not be corrected by a doctor who points to the children's weight as not.

    In the eating disorders world it is well-known and embraced that healthy children rapidly gain weight as they approach puberty.

    In the eating disorders world it is understood that dieting is an unhealthy behavior, that healthy weight is whatever one's body ends up with when they are behaviorally and mentally healthy - a wide range of body shapes and sizes. Average weight people can be unhealthy, and non-average weight people can be healthy.

    Behavior, not weight, are appropriate health measures.

    But OUTSIDE the eating disorder world none of the above is true. In fact, most people believe the opposite on every single point, and are not aware of any other way to think or that the science supports all of the above. I am sucker-punched to read that our First Family put their daughters on a "diet" because they feared "obesity" and no doubt will be lauded for it.

    This is not an eating disorder issue, however, and it should not be only us who know this and speak out about it. These are medically, socially, and ultimately self-defeating errors in thinking and do harm to all children and all of us. I am very sad today.

    Work globally, speak locally

    Recently, I spoke to our pediatrician. Really spoke to him, in a one-on-one meeting**, about how we talk to kids about weight and eating and health.

    I left him with two very important tools:
    The Academy for Eating Disorders Guidelines for Childhood Obesity Prevention Programs
    and a copy of:
    Preventing Obesity and Eating Disorders in Adolescents: What Can Health Care Providers Do?

    I've stood before hundreds of people at a time, written a book that thousands have read, and talked to countless people about these issues but in some ways the hardest thing was to sit in a consultation room and disagree with the person who monitors my own child's health.

    I'm happy to report it was a good conversation. I don't know that I was able to convey my points effectively, or that the doctor will consider a less weight-oriented approach to health, but the conversation felt necessary and I left hopeful. Maybe what it will take are lots of conversations like this.

    I'd love to hear from other parents who have had these kinds of conversations.

    **For those of you curious about the fine points of the U.S. insurance business, the visit cost me $225US. If my child had been in the building, even in the waiting room, it would have been covered by insurance and I would have only paid a $20 co-pay. I didn't want to pull my son out of school for two hours and have him sit in a waiting room alone, so I paid it. Ouch.