August 31, 2009

A timeline of passions about food

I think you will enjoy this timeline of ideas and fashions about food. I especially like this quote, in the introduction: "It could also be that deriving pleasure from food, rather than living in fear of it, might soon be shown to be a critical factor in a truly healthy lifestyle."

** A grateful shout out to Mamame for delivering this gem!

August 30, 2009

The power of "and"

What do these two highly-publicized media stories have in common?

Mom charged with neglect in adult daughter's death
and
Mom: My Daughter was Bullied into Anorexia

Both stories are tragically in need of the word "and."

People can be abused AND have a mental illness. People can be bullied AND have a mental illness. AND is not the same as SO. Let's not confuse AND with SO, because it often leads to the correlary: you have an eating disorder SO you have been abused or bullied or otherwise victimized. Let's care about bullying and abuse AND eating disorders without seeing the relationship as cause and effect.

I would argue that being abused or neglected or bullied make one's mental illness that much more tragic. The mentally ill are, in fact, often victimized by those around them. Parents who themselves are ill cannot serve well as guardians and nurturers of children, and mentally ill children desperately need safety and loving homes. Bullies pick on those most vulnerable to their cruelty: and any child who is different is more likely to be targeted.

August 28, 2009

Guest blogger - more great answers

My friend, Stephanie, has some wonderful rejoinders to add to the ones I gave in an earlier post:

NOW WHY YOU CAN DO THE MAUDSLEY APPROACH
1. Your child is suffering from a serious, life threatening illness and although very willful while under the influence of it needs you to take over where he/she is unable to make effective decisions.
2. Although ED will hate the steps that you take to fight it and protect your child, he/she will thank you in the in long run for saving their life.
3. Maudsley is A LOT more then trying to make someone eat. Besides, we live and learn from past trials and errors.
4. You know that the ED will impede him from "wanting" to eat. He does not have to want to eat, he just needs to eat. Effectiveness is doing what is needed in a situation, it does not entail liking, wanting, etc.
5. If your current treatment providers are not on board and supporting use of evidence based and effective treatment then it's time to shop for new providers. You and your child deserve the best treatment possible. Research demonstrates that Maudsley is the treatment of choice for individuals with eating disorders under the age of 18.
6. Any eating disorder is bad enough. Research demonstrates the best prognosis is associated with early intervention, shorter duration of illness, comprehensive treatment, continuum of care and full weight and nutritional restoration.
7. There is no such thing as too serious. If inpatient/residential treatment is needed for medical stabilization prior to outpatient treatment it is still essential for parental/family involvement in treatment. A comprehensive plan is essential for continuum of care following discharge.
8. No one told me about it. This is very unfortunate but now you know so please go to www.aroundthedinnertable.org to get more information, resources and support in conjunction with an individualized and comprehensive treatment team. You and your child deserve the best treatment possible!

August 27, 2009

Follicular dysmorphia

"Your hair doesn't do that," my hairdresser said.

After a lifetime of wrestling and scrunching and smoothing my snarling tresses I finally learned the truth. It was obvious once I looked in the mirror after she explained it.

"It does this." She said, the first hair professional to ever simply explain.

I'm adjusting to this new, old reality. I'll probably still try to make it do that once in a while, applying products and hot metals to the effort. But there is something to knowing that it just doesn't do that. And this is okay.

** And yes, L, this is an allegory, an allusion, an analogy, and a true story.

August 26, 2009

Why I can't do the Maudsley approach

  1. My kid is too strong-willed.
  2. I don't want my child to hate me.
  3. I tried making her eat before and it didn't work.
  4. He has to want to change.
  5. Her therapist doesn't believe in it.
  6. His illness isn't that bad.
  7. Her illness is far too serious for that.
  8. No one told me about it.

I've heard it all.

  1. Your child's ILLNESS is strong-willed. The stronger your child was, the more the ED has to use against your child, the stronger YOU need to be to protect the patient.
  2. I see lots of former patients who hate their parents, but they aren't the ones who got successful Maudsley therapy.
  3. It isn't 'making them eat,' it is a treatment approach that helps you support your child in ending malnourishment and ED behaviors.
  4. No one wants swimming lessons when they're drowning. Insight and motivation are results of successful treatment, not a prerequisite.
  5. FBT/Maudsley is not the Tooth Fairy. It is a well-established model of care with more research to support it than any other approach. Not believing in it says more about the clinician than the method. Most therapists do not receive training in the causes and evidence-based treatment of eating disorders. Your child deserves one who has.
  6. Pregnancies, government programs, and infections start small, too. Early intervention offers the best chance of full recovery.
  7. Maudsley therapy isn't a self-help program. It is done with a trained treatment team and under medical supervision with full knowledge of the medical and psychological seriousness of the illness.
  8. It isn't your fault that no one told you, but now that you know you can act. Find evidence-based care, and put everything else - including regret - aside. When your child is well, join the activists out here trying to improve things for all families faced with an eating disorder.

August 25, 2009

F.E.A.S.T. receives nonprofit status!

Big news at F.E.A.S.T.!

In an unexpectedly rapid turnaround, F.E.A.S.T. has received 501(c)(3) status from the US IRS. We are now an official nonprofit charity. This is a really important milestone. This means all donations are tax-deductible for the giver, and makes us eligible for many benefits and services only available to nonprofits.

Parents who find F.E.A.S.T. can rest assured we are a legitimate organization organized and operating in the public interest.

I am deeply grateful to our legal team at Bingham McCutchen in Washington, DC for donating their time and expertise, as well as to the F.E.A.S.T. Board of Directors and Advisory Panels for their service over the past 18 months as we created this organization.

A special note of personal gratitude to four important contributors to this milestone: Sarah, who insisted for years that this needed to be done; to R&M for sending the precipitating funds and vote of confidence; to Chris for pulling the team together; and to my family for their steadfast support. Thank you all for believing in this, and in me. I do not take it for granted, and so enjoy working as a community.

Now, to work: helping families and standing up for families!

August 23, 2009

It's a very convincing ride

Colleen, you have a gift for analogies:
"If you have ever gone to Epcot, you may have gone on that great ride, Mission to Mars. You enter a 'space capsule', get strapped into a seat and watch the monitor right in front of you. You 'know' you are on the launch pad about to be blasted into space because you can see it and you are willing to believe it. You watch the monitor and there you are on the launchpad. As the rockets start firing, you can feel the g-forces increase and you are pushed back into your seat. This all makes sense! You are lifting off!

I think later on you get battered by space debris and you can feel the capsule hitting those rocks. It's a very convincing ride--you really feel like you are heading for Mars.

You have these real feelings of g-forces, weightlessness and rock-hitting, and by watching the monitor you have a context that makes them very convincing and real.To the ride operator and the rest of the world, you are in a centrifuge that spins and bumps.

They aren't seeing your movie...they are outside the ride and have a different context for your feelings.I think of our AN kids as being in this ride. They are experiencing very real feelings: depression, anger, self-harm, joylessness, fearfulness. But the context that they put those feelings into isn't real, any more than the movie on the monitor is. They are inside the ride.

It makes perfect sense to them if ED tells them that food is scary or that they are fat or that Mom hates them or that nobody likes them--because that is what is playing on their monitor. Their feelings of depression, fear and rage are real feelings that physiology is playing on their bodies and minds...and ED plays a movie on their internal monitors that puts these feelings into a context that makes sense to a mind recovering from starvation."

August 22, 2009

Parent Night event in St. Paul

I'm looking forward to visiting the Emily Program in September and joining them for a Parent Night Event. They've asked me to speak with the families, and I am really looking forward to learning more about the community there.

If you'll be in the area, please come!

August 21, 2009

At risk for high achievement

Does being driven make you sick, or does sickness drive you?

We tend to look at high achievement not only as inherently positive but as virtuous. A person with high grades and multiple achievements draws praise and envy, not alarm.

It is easy for me to see the Association of Higher Parental and Grandparental Education and Higher School Grades With Risk of Hospitalization for Eating Disorders in Females as a manifestation of pathology. I have seen how anxiety and compulsivity and painful perfectionism can bring rewards - and I have seen the cost. Few of the really accomplished people I know are "happy." And few of the happy people I know are the top of their class/profession/accomplishment.

I no longer see high achievement as an unalloyed good. I no longer cheer quite as loud at top grades or awards. I have no stomach any more for gossip about those whose paths are simple.

I hang my head at the conclusion here: "Thus, higher parental and grandparental education and higher school grades may increase risk of hospitalization for eating disorders in female offspring, possibly because of high internal and external demands." I know that people will read that and continue to blame parents for driving their kids too hard and showing a bad example. I read that and make a different conclusion: that families with a high degree of anxiety are also at risk for eating disorders. Not that your social class and achievement cause pressures that cause eating disorders, but that anxiety puts you at risk for high achievement and for co-morbid conditions like eating disorders.

I'm not arguing for sloth, here, or low expectations. But I am hoping that as we come to better understand mental health and illness we become more sensitive to the fact that more is not always better. Mental suffering at the hands of high anxiety is not repaid in accomplishment - it is just suffering.

August 20, 2009

Lessons from important books

I'm recently reminded of what Rachel at Peregrine said as she quoted the following to Carrie at ED-Bites, of the pain of being real:

"I'll let the Velveteen Rabbit say it, Carrie:

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

"I suppose you are real?" said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive.

But the Skin Horse only smiled. "

August 18, 2009

Ways to perform a parentectomy

How to alienate, disempower, triangulate, separate, and estrange parents from their ill children:


"Mom, why don't you wait out here."

"We're going to advise a six-week residential treatment stay."

"Your daughter says you don't give her any control in her life."

"Dad, I understand you are on a diet?"

"We think it is best for parents to give the patient space."

"Let's leave that to the professionals."

"Is mom over-feeding you?"

"It can take years of therapy to reveal abuse."

"We have a Family Week - let's save your thoughts for that time."

"Let's not talk about fault here. We're talking about contributing to the illness."

"Parents don't mean to damage their children. But..."

"She just can't seem to 'use her tools' at home, and we think a change of living arrangements is often helpful in breaking these patterns."

"Often, moms and dads aren't aware of..."

"Young people try to protect their well-meaning parents from the realities of their life."

"Can you tell me more about why your husband is so angry?"

"Are you getting treatment for your own issues?"

"Eating disorders do not occur in a vacuum."

"Isn't that a bit over-involved?"

"What scares you about having other adults speaking with your child alone?"

August 17, 2009

A wonderful essay

Back when I first started talking about eating disorders as a brain disorder and the functional role of food in repairing eating disordered thoughts I rarely heard anything good from patients. That has changed. More and more, I am getting mail and comments from patients who are thankful to have a new way of looking at their illness and appreciative of the implications of eating disorders truly being a biologically based illness.

Recently on the F.E.A.S.T. site we published a wonderful essay by a young woman with autism and anorexia.

August 16, 2009

The "social value" trigger

An idea has been percolating for me a while. We don't advocate ending soap and shampoo commercials or unrealistic images of cleanliness out of concern for those with compulsive hand-washing or contamination OCDs, yet we do argue for changing the media to protect those vulnerable to eating disorders - should we?

If our society put a value on untidiness, or fatness, would OCDs and eating disorders take a different form? Is it the level of social value or the level of underlying brain pathology at issue?

I'm pretty sure that the "social" part of bio-psycho-social is about how humans pick up on morality in whatever form it exists. If thinness is valued then a brain primed to get its needle stuck on moral themes is picking up on the cue.

By this logic, yes: our society's mania for ectomorphs and our fat-phobia play a role in 'triggering' eating disorders. But that doesn't mean these values cause EDs. No one thinks people with OCDs got them from Ivory Soap commercials. We know intuitively that the illness is in the brain and the particular behaviors are unique to the individual's experiences.

The rub: eating disorder behaviors have the unhappy symptom of nurturing those patterns in the brain through malnutrition and setting off primal instincts around famine: effectively overriding efforts to turn the compulsive thoughts off.

(For the record, I advocate boycotting and demanding change in the media's images for another reason: because they are stupid, vapid, sexist, and harmful for ALL of us. What I'm questioning is how it all relates to eating disorders and whether our zest to shelter patients from the media actually validates their anxiety.)

August 15, 2009

Two college seasons - one rant

The ED world is buzzing with the same chat that always goes on in August: parents and clinicians looking for referrals to eating disorder treatment for a student leaving for college. These emails, listing symptoms and medical state, break my heart. They often use the word "motivated" and "charming" as if patients need to be pleasing in order to garner a clinician's attention.

It all begs the question: Why would a student with an active eating disorder be going to college? Really - I'm serious. I don't understand why this is acceptable. This is a life-sucking, potentially disabling or lethal illness: an anosognosic condition that thrives on secrecy and freedom from monitoring.

I know the tremendous pressure on parents by social expectations, by the young person's insistence that everything will be all right and that this is all he or she "lives for." I know the guilt and disempowerment of being told by professional advisers that we must 'let go.' I also know parents just get tired, and our egos get involved in the accomplishments of our children.
But you know what? We're parents, and that is a lifelong position. We have a right and a responsibility to do what is right for our child according to our unique and loving judgement. No one can tell us (and no one will take responsibility later) whether college is safe or advisable.
I put my money where my mouth is on this one: my daughter relapsed slightly after her freshman year and we withdrew support for college until she was not just well but quite well. She did not like that. We did not like doing it. But I believe it was our job to do it, and her longterm health and recovery depended on it. When she was ready, she went back and thrived (and had a treatment team for maintenance).

I've dealt with two universities as a parent - neither were in a position to protect or support my daughter's mental health. They said they could and would, but that isn't realistic. Looking back I don't know why I entertained the idea that they could. This is not diabetes or a vision problem where the patient is motivated and able to reliably self-monitor. Schools are not parents.

No team of providers on or off campus is going to be able to provide the kind of accountability and monitoring and personal support that a parent provides and an eating disorder patient deserves. No one at the dorm is going to watch out for or call the parents of a student unless the situation is so far gone that irreparable damage is done. We can't expect it and we can't get angry that they don't do it.

If you are not 100% confident of your child's recovery, committed to staying in the picture more than your child and school may like, ready to visit frequently, and have an expert team in place and in communication then why is college more important? If you feel pressured, or exhausted, or trapped, keep this in mind:

During November break is when I get the most emails and calls - from families who now realize their hand-wringing worries were well-founded and a shaky recovery is now an derailing relapse.

Recovery - full recovery - first. School can wait.

August 11, 2009

Dismay

For various reasons, I have been in a number of doctor offices in the past few months - for myself and for others of various ages. (Not to worry, everyone is okay.) Today, for example.

I have stopped counting, but not stopped smarting, from the times a doctor has advocated something disordered. All the things that in the eating disorder world we ask patients NOT to do, I have witnessed a doctor recommending:

Detailed food logs. Cutting out entire categories of food. Stop eating "bad" "processed" "modern" "unhealthy" foods. Take laxatives when you feel too full. Fasting on fluids is the same as eating. Read food labels. Calling a child "overweight." Telling a child to eat less. Don't eat foods that make you uncomfortable. Weighing in hallways. "If you don't let us weigh you then we won't file this visit with your insurance company." Weight is about personal choices. Eat less. Eat less. Eat less.

Between seething and ranting about all this I realize how far one must drift from the toxic mainstream to see it for what it is: unscientific, falsely authoritative, insidiously moralistic, chaotic, and logically under-powered.

The task is enormous, even with science behind us: to convince the medical world to stop prescribing eating disordered behaviors. For potential ED patients, the cost is tragic. For the rest of us, the cost is still far too high.

August 9, 2009

Wizardly detours

My son and I drove home yesterday. 13 hours on the road. Oy.

I've been driving since I was 16, but no automobile feature has ever matched what having a GPS has meant to me. I'm competent and safe but not spontaneous behind the wheel. Without that talking box I would never have undertaken a road trip like this: he and I packed up the car with our stuff and a cooler of snacks and an eventual destination (grandma's house) 439 miles (706 kilometers) and six states away, with no particular time of arrival, and came back the same way. Other family members came by train or by plane, but we had the best adventures.

The GPS meant we could drive as far as we felt like it and then push a button to get a choice of hotels, get gas or food, or just take a whim to follow a small detour to the most under-promised but over-delivered tourist destination I've seen.

All the stress of driving, for me, dissolved. I knew where I was, where I was going, and detours were of little consequence. The ten miles of unexpected construction delay: whatever. The accident 50 cars ahead of us that left thousands of people standing around on the interstate highway chatting and trading stories: a welcome restoration of blood to our backsides. The Dunkin Donuts that wasn't there led us to to a hometown coffee place that was.

I didn't listen to the GPS (we call her Hermione) all the time - she was our consultant but not our boss. My son and I liked her "arrival time" that constantly changed, and a way back to the main road when we pulled off. We laugh at the slightly judgemental way she hesitates and then says "Re-Calculating" when we don't take her advice. We forgave her not knowing how to get to my town watering hole - and she didn't know the old names for stuff - but she was sure a good friend these past few weeks.

I could use a GPS for other aspects of life (Like two weeks of mail, dog hair, phone messages, and 'to-do' items sent to the "next week." that are now "this week") but how nice to be home with family and weeks of happy memories.

August 7, 2009

What I did on summer vacation

Vacationing in my hometown with family:
My son and I saw the most amazing rainbow EVER, I changed diapers, made my dad laugh, tap danced for my grandmother, my high school sweetheart bought me lunch, had a party, saw my niece make the final out in softball game, laughed at the sight of my original parents and my bonus parents all laughing together, swam in a pool on a hill, did a lot of hugging, kept running into childhood friends, brought my kids to the town watering hole and heard three languages I never hear at home, got to know my daughter's boyfriend better, made the infamously strong family coffee every morning, let my son stay up until all hours with his uncle...

and had coffee with a mother from the ATDT forum who impressed the heck out of me!

August 5, 2009

Yeah, but what about bulimia?

There is a well-justified complaint out there that I and others pay more attention to anorexia than we do bulimia. For myself, this is influenced by my own experience: my daughter had a mostly restrictive eating disorder and I can't speak from experience in the same way. I don't like to presume that I know what a family experiences around it.

But, there are other reasons. Anorexia is better studied, as the clinical presentation is more uniform. Anorexics are forced into care when symptoms are extreme, while bulimia can be hidden even in life-threatening severity. Bulimia is often experienced with more shame, and family members often buy into or share that reaction. People are less sympathetic to bulimia and don't imbue it with the same romantic analogies and narratives.

We don't seem to be very clear about the differences and similarities between the conditions, either. There is a crossover population, so we know they are related, but the risk factors and pre-existing personality traits differ. Treatment seems to be different, too: there are drug approaches for bulimia, and different psychological therapies.

We need to understand bulimia better. This is interesting: High-fat, High-sugar Foods Alter Brain Receptors

August 4, 2009

Love the article, hate the title

I am not happy to the word "cling" in the title, but the article is interesting and the research even more so: Why Anorexic Patients Cling To Their Eating Disorder

We really need to know are two things, it seems to me:

  • What is the impact of nutrition on these symptoms?
  • How effective are the available therapies in influencing this rigidity?