April 30, 2008

"The bottom line is pleasure"

When a loved one gets anorexia or bulimia the topic of food can become painfully intense: tortured, really.

What IS normal? And how do we get there? I really REALLY like the work and philosophy about family eating that Ellyn Satter offers. To over-simplify what is very well-reasoned and scientifically based thinking I would say the major take-homes are: being confident as parents when it comes to meals, and: "the bottom line is pleasure."

Modern life, and an eating disorder in the family, really messed with both confidence and pleasure for our family. Regaining both has been an evolving process. Satter has helped!

April 29, 2008

Is breathing optional now, too?

During my daughter's recovery she felt resentful, and ashamed, about how much she needed to eat and how other people didn't seem to need as much. All my arguments about differing metabolism and explanations of the higher calorie needs of people recovering from malnutrition - didn't register. I know now that it is part of the illness to think that way about food even if the actual amount is a thimble-full of fresh lettuce.

I asked her "What if you discovered that you needed more oxygen, or that you metabolized trace minerals faster than others?" Would it allay the feeling of "taking too much" or the guilt of need more?

She said no. It would apply to oxygen, too. It would apply to anything. Her brain made her think she "shouldn't need" these things, or at least not need them any more than anyone else.

She no longer thinks this way, much. But I thought of that conversation when I read about people learning to not need to breathe: Holding Your Breath.

Just because you can, does that mean you should? Eating, sleeping, breathing: why are we determined to make these things avoidable?

April 28, 2008

Shocked, SHOCKED

I'm not sure if the word "shock" applies here:
  • Professor Pope weighed 30kg (66 pounds) at 4'10" (BMI: 13.8)
  • Suffered from an eating disorder since her teens
  • Did not eat anything but fruit and diet sweets in public
  • Was socially withdrawn
  • Lost 10kg (22 pounds), or 13% of her total weight in the past year
  • Hoarded food and food magazines, brought her own food to people's houses, and cooked feasts for others and left the room as they ate.
That's not shocking. That is anorexia nervosa. What is shocking is that in 2008 we would call it "self-neglect"

It should be shocking that the SYMPTOMS of mental illness (an emaciated person being "incredibly energetic, enthusiastic and capable" "irrepressible and determined" "understanding, generous and loving sister and affectionate") are used as laudatory or mitigating facts.

It is tragic that loved ones are led to believe (by society and even clinicians) that the risk of damaging the relationship is greater than the risk of this crushing illness.

I don't blame the family or the colleagues. I blame us. Society. We think that patients must understand and choose recovery in order for us to do the one thing we all CAN do: STOP ACTING NORMAL.

Stop eating the food they make us and don't eat. Stop walking on eggshells. Stop praising symptoms like energy and selflessness and focus on work. Stop accepting the labor of an ill person who is unable to care for herself. Stop pitying and being angry or hurt. Stop acting normal until they are. It is the least we can do.

April 27, 2008

Disorderly conduct

Ubiquitous disordered eating and bad body image are:
  • A sign that our society is sliding into collective anorexia/bulimia/binge eating disorder?
  • Evidence that society is wicked?
  • Proof that science education in schools is inadequate?
  • One more sign of (choose your social cause)!
  • Caused by a lack of food labelling?
  • Driving people to choose eating disorders?
  • Better than poking oneself in the eye with a sharp stick?
  • An alarming trend that is fun to feel shame and gloat over?
  • Just a condition of modern life?
  • Allowing humans to unleash the powerful anti-anxiety drug of semi-starvation to save money on alcohol?
  • Actually makes us healthier since now that we know, we'll all change?
  • Pushing most people toward malnutrition that threatens cognitive, emotional, and medical health.
  • Triggering mental illness in the minority of people with certain genetic profiles.
  • Masking the presence of disabling anorexia and bulimia in individuals because the rest of us normalize being disordered about food and weight.

April 26, 2008

Shell game

I'm dismayed by the shell game of blame.

If you say that it isn't about parenting, then you are accused of blaming the victim.

If you protest that it isn't about the media, you sound as if you are siding with size zero models.

Cite biology, and you are insulting patients who choose recovery.

I've been told that my belief that eating disorders are a biologically based illness is a pass for parents, ignorance of toxic media, denial, and discrediting my own child's work toward recovery.

We don't need someone or something to blame. We don't need blame. We know what patients need: they need food, they need unconditional support, they need a low-stress environment, they need skills to prevent relapse, and they need time.

April 25, 2008

Oh, like Kimkins is any better?

Thank you, Jennifer, for this reminder that society's weight craziness is not new, and that the remedies have always been ridiculous.

April 24, 2008

How does that make you feel?

To treat an illness it is essential to be able to name and measure it. We find if very hard to believe in or understand an eating disorder - it is invisible to others, secrecy is a standard symptom, and even the patient struggles to understand his or her own thoughts and feelings.

We do not yet have biomarkers for the presence or severity of an eating disorder. But can it be far behind?

Study finds biomarker for depression

And in the recent past: OCD, Psychosis, Bipolar illness, PTSD.

April 22, 2008

your grandparents make you sick

In case you grow weary of blaming yourself and your child for his or her eating disorder, here's a fresh target:

OK, a review: self-reported familial problems are a common symptom, not necessarily a cause of mental illness. Mental illness, being genetically-transmitted, runs in families and therefore a family with an ill child would naturally have relatives with similar illness. Give grandma a break.

April 20, 2008

Bill of Rights for Families

Children’s Mental Health Coalition Introduces Bill of Rights for Families Living With Mental Illnesses:

1. Treatment must be family-driven and child-focused. Families and youth, (when appropriate), must have a primary decision-making role in their treatment.
2. Children should receive care in home and community-based settings as close to home as possible.
3. Mental health services are an integral part of a childs overall healthcare. Insurance companies must not discriminate against children with mental illnesses by imposing financial burdens and barriers to treatment, such as differential deductibles, co-pays, annual or lifetime caps, or arbitrary limits on access to medically necessary inpatient and/or outpatient services.
4. Children should receive care from highly-qualified professionals who are acting in the best interest of the child and family, with appropriate informed consent.
5. Parents and children are entitled to as much information as possible about the risks and benefits of all treatment options, including anticipated outcomes.
6. Children receiving medications for mental disorders should be monitored appropriately to optimize the benefit and reduce any risks or potential side effects which may be associated with such treatments.
7. Children and their families should have access to a comprehensive continuum of care, based on their needs, including a full range of psychosocial, behavioral, pharmacological, and educational services, regardless of the cost.
8. Children should receive treatment within a coordinated system of care where all agencies (e.g., health, mental health, child welfare, juvenile justice, and schools, etc.) delivering services work together to support recovery and optimize treatment outcome.
9. Children and families are entitled to an increased investment in high-quality research on the origin, diagnosis, and treatment of childhood disorders
10. Children and families need and deserve access to mental health professionals with appropriate training and experience. Primary care professionals providing mental health services must have access to consultation and referral resources from qualified mental health professionals.

April 19, 2008

Anti-pro-anti-pro-ana, or no?

Everyone is talking about the news of France to Crack Down on "Pro - Anorexia" Web Sites, so you'd think I'd have formed a strong opinion on the matter.

But I find myself ambivalent and annoyed. First of all because the attention to the sites would seem to be a recipe for spreading them. Secondly because the media is perpetuating the idea that an eating disorder is about wanting to be thin and the solution is to stop talking about that. I also wonder why people think that the Internet is washable. Then there is the fact that the pro-ana materials are clearly far more symptom than cause. I'm also not at all sure where the line between Big Fat Loser/BMI report cards/the cover of Teen Vogue/and the morning talk shows' obsession with weight loss ends and pro ana begins. And I'm annoyed by the prurient nature of everyone's SHOCK over these sites.

But here's the bottom line. Someone I love dearly was once in the command of these thoughts - though I don't think she visited pro-ana online communities. My daughter was gravely ill, and those thoughts were horrific and imprisoning. Fining her for expressing those thoughts would not have helped her.

Pro-ana is like porn. (some even point out that a portion of it IS porn.) As parents, we are right to be wary about our children wandering the Internet. We are right to expect website services to shut them down when possible. We should all stand up against the sad images and sadder victimizations.

But criminalizing the behaviors of a mental illness doesn't help the victims. The sites are not the problem. Society's unwillingness to ensure treatment for ill people is a problem. Society's ignorance of the nature of brain disease is a problem. Untreated anorexia and bulimia are the problem.

Instead of anger and disgust, I feel sympathy and caring for people creating and visiting pro-ana/mia websites. These are our children, lost behind a wall of cruel (and anosognosic) illness. The hell they are displaying is nothing compared to what they are experiencing.

I guess I'm not as ambivalent as I thought.

April 16, 2008

FEAST update

I'm pleased to report that FEAST, our new organization by and for parents of eating disordered children, is progressing nicely.

Check out the preliminary website (to be replaced with a fuller site next month) at www.feast-ed.org .

You can read about our Parent Council, and also our Advisory Panel of clinicians and others in the ED field. You can see our statement of principles, and our goals.

In the coming months, FEAST will move forward with projects to support and inform families coping with an eating disordered child. Parents have unique abilities to reach out to one another - it is an honor to be part of this organization.

April 15, 2008

Dancing backwards with my best friend

One of my wedding vows was that I would never take my husband for granted. But once in a while in the dance of daily life I neglect to tell him that. I figure I've told him countless times how much I admire and adore him. I am loathe to brag in case others feel envious. I avoid speaking for him and end up mistakenly not speaking enough about him.

My husband is the bedrock of our family. He made my daughter's recovery possible. I did not and could not do it solo. Our marriage wasn't scenery - it was the music we danced to. Without his hand on my back, and our eyes on each other, we could not have helped her or our son get through the crisis or its aftermath.

Today, when it is not your birthday and not our anniversary (is it? uh, oh - better check) and not Father's Day, I want to tell you, darling, what a glorious duet this is. Night and day. Under my skin.

You are the Astaire of husbands, partners, and you are my best friend. You already know that, I trust. But it doesn't hurt to repeat it; frontwards, backwards, and in heels.

April 14, 2008

April 13, 2008

The spice of life

Full weight and nutritional rehabilitation are necessary first steps to recovery from all eating disorders. But does it matter what foods you eat?

Anecdotally, parents report that variety and energy-rich foods improve outcome.

These parents may be right: those whose post-recovery diet includes less dietary energy density and diet variety appear to have higher rates of relapse. Even with the same caloric intake, the content matters. And this makes sense, nutritionally AND behaviorally.

So for the recovered anorexics who get enough calories but they are all in lettuce, and the recovered bulimics and binge eaters who live on cereal, we can say: variety is truly the spice of life.

April 12, 2008

Lobby Day report

Lobby Day in Washington this week: absolutely wonderful.

Because so many of the parents on Around The Dinner Table sent support in the form of cheering, ideas, and donations.

Because that support allowed FEAST to sponsor the food for the training day "Meet and Greet" and the Lobby Day breakfast.

Because I stayed at Hotel Mother-in-Law and she fed and fussed over me. Yes, I do have an umbrella and no I do not need lipstick.

Because I got to meet E and his 11-year old daughter, S. E's family was one of the first on the forum. S was, by some reports, the most effective lobbyist of the day as she described the unique anguish of watching her sister suffer and her parents and extended family cope - and sucessfully support recovery.

Because I also got to meet C, a more recent dad on the forum and one of my trusted advisers as FEAST has gotten off the ground. C and my husband were fast friends at the evening reception overlooking the Capitol plotting the overthrow of Old School treatments.

Because my valued friends Carrie and her mom were there!

And wonderful D and her daughter - who brought their friend D who was such a wonderful partner on my Virginia lobbying team.

By my calculations, 10% of Lobby Day participants were part of the ATDT/FEAST community. You cannot imagine how happy and honored I was to be part of this event along with them. I did not get to spend enough time with any of them.

EDC does a wonderful job, and I believe it has an impact. Mental health parity legislation and the FREED Act were advanced a step this week. I am so looking forward to doing it again next year!

April 11, 2008

Too tired to speak

I am bone tired from Lobby Day and too disorganized to write about the FANTASTIC experience yet but since I was on the radio yesterday, I'll speak up that way today:

April 5, 2008

What fat acceptance and eating disorder treatment have to do with one another

There is a growing (ha!) movement toward Fat Acceptance in the blogosphere and in the real world. It is parallel to a movement in nutritional circles called "Health at Every Size."

What has this movement and philosophy to do with treatment of anorexia and bulimia? After all, much of the message to eating disorder patients is "we won't let you get fat."

The fact is, recovery from an eating disorder involves Fat Acceptance regardless of the actual size and dimensions of the person. Our society has, like a boa constrictor, made 98% of the population feel "fat." We are told we have control of our weight, in defiance of our DNA, even though healthy weight ranges are as genetic as shoe size and height. We are not all going to be healthy at size 8, or 18 - we vary. And that is a beautiful, good thing that we've lost sight of.

The ease, or difficulty, of acceptance isn't really different based on what we look like to others, or what we weigh.

We need to stop fighting with our loved ones with the argument "you aren't fat." We need to accept that being healthy may not feel good or normal for a while, and you won't look like a Barbie Doll. We also must stop giving the message that self-loathing and self-injury is okay if you really ARE fat.

Measuring the scale

I hate the word "weight."

I hate the over-dependence on weight measurement and BMI in eating disorder assessment and treatment.

I hate the way our society uses weight measurement as a proxy for any number of values including morality, health, personality, even class.

That one-dimensional number shouldn't be a thing to fear or focus on. It is just one of many data points, like blood pressure and blood sugar and height and shoe size and cholesterol and DNA analysis.

If those measurements were as easy and cheap and accessible as a bathroom scale, would we perseverate about them in the same way?

April 4, 2008

What's our problem?

There is a lot of misunderstanding about body image and eating disorders.

Since society has clearly become irrational and disordered about the importance of appearance, we've lost sight of the fact that some people truly have brain problems that distort their visual and physical sensations and they literally see their reflection and feel their bodies in distorted ways that are just as real to them as the distance to the end of our fingers is to the rest of us.

Like amputees who feel their lost limbs, brains can truly distort reality.

Malnutrition can trigger this delusion. It can maintain the delusion. And it can lock the patient into perpetuating the delusion by making them blind to it and unable to calculate the risks and rewards of continuing.

They do not choose this. The rest of us are choosing, however. Choosing to overvalue appearance, to perseverate about the shape of our body, to talk endlessly about the ways we are torturing our bodies in the service of some mythical perfection.

Some people have brain disease. What's our excuse?

April 3, 2008

Concentrating on eating

We hear a lot about mood disorders and anxiety disorders and personality disorders having a relationship with eating disorders. With all of these conditions, an eating disorder can mask the other illness, or it can be fed by it. In some cases, the full nutrition of ED recovery also resolves what seemed to be co morbid depression, anxiety, OCD, or BPD.

Time to add another condition to both watch for and discern from the symptoms of an eating disorder: ADHD May Boost Teen Girls’ Risk for Eating Disorders

April 2, 2008

We can't ask, you won't tell

Parents worry when kids go off to college. If our child had an eating disorder or other bout of brain disease in the past, we worry a lot. Cooperation and communication could help:

Proposal Would Clarify Law On Sharing Student Information: "The proposed regulation goes a step further, tweaking guidelines to make it explicit that parents are among the parties who can be contacted if a student is at risk."

April 1, 2008

Fear of frying

For those of us who have seen our children develop odd and counterintuitive attitudes about food, a fascinating line of thought: