March 31, 2008

Jockeys don't have control issues

Jockeys 'run risk of eating disorders' in bid to stay slim

Have you noticed that when men get eating disorders, or athletes of either gender, the conversation is a bit different?

Instead of framing the issue as a social problem, the tendency is to see the issue as just an episode of eating too few (or using too many) calories. Either way, the whole issue of "mental illness" and brain function is avoided.

I contend that there are more choices on the menu than 'social illness' and "scary permanent nutcase.'

I object to athletes and men with eating disorders being seen in a separate category from other ED patients. I don't believe Manorexia and the Female Athletic Triad are so different from what Boy Scouts and chess champions suffer from.

Can you suffer from malnutrition and not have mental symptoms? Yes. Can you suffer from ED mental symptoms without currently suffering from malnutrition? Yes. But when you have mental symptoms that perpetuate restrictive or erratic eating you have an eating disorder.

This particular parsing of illness serves to furthers the stigma for women and non-athletes. It leaves 'manorexics' and athletes at risk by not providing the counseling they will need throughout life to cope with a predisposition to eating disorder thoughts and behaviors.

March 30, 2008

Lobby Day Update

Plans for the April 10 Lobby Day in Washington are going well. Scores of citizens from around the country have signed up to participate, and teams have been formed by state. Each team will have 4-5 appointments for each citizen to tell their story. The goal is to gather sponsors for FREED by letting Senators and Representatives know on a personal level what better insurance coverage, better coordination of research, better collection of statistics, and better education for clinicians would mean.

Each one of us that gets to these appointments is seen as representing many more who could not be there. So each participant really matters.

There's still time to register. And if finances are low, some very generous parents have donated funds for this purpose! If you need a place to stay, let me know.

FEAST, our new parent coalition, is sponsoring the food for Lobby Day participants at training on Wednesday and breakfast on Thursday. What could be more appropriate than for parents to feed people?

Two parents who wish to be anonymous sent donations to support Lobby Day and FEAST. One sent a $1,000 check. Another, from Australia, sent almost $200. I want to extend sincere gratitude to you both, for your support of fellow parents and for the Eating Disorders Coalition.

I also want to say thank you to the many kind, wonderful parents who have sent donations large and small since October (a total of over $1,000) to support the Forum. And the family who sent $7,500, and let me send it back until I have an organization in place to receive such an amazing gift. Your support, financial and moral, all of you, is what has created FEAST.

The Eating Disorders Coalition has extended sincere thanks to FEAST for helping out with Lobby Day. It takes a team approach to address an eating disorder. It also takes a team effort to change the way eating disorders are treated - FEAST - and you - are now part of that team.

March 29, 2008

Stuff it or talk it through?

My husband and I have different responses to feeling bad. I tend to talk about it, he distracts himself until he feels better. We are both equally successful in our strategies, and exasperate one another equally as well.

Of course I like it when research confirms the wisdom that reappraising negative emotions is often a better mental health strategy than suppressing them. But I wonder if reappraising has to be verbal, and whether sometimes talking is a way to suppress emotion. And when I'm tempted to tell my husband that my way is better I remind myself that our kids (a boy and a girl) get to see us model both ends of the spectrum and might develop their own unique quiver of tools..

March 25, 2008

There will be a FEAST

The name chosen for our new parent organization is:

FEAST:
Family Empowerment and Support for Treating Eating Disorders


Mission: FEAST connects parents and caregivers of eating disorder patients with each other to share information and resources and facilitates parent activism to reduce the suffering and stigma connected with eating disorders.

(May I have your feedback, in the comments or by email, before the board meets on Monday, the 31st?)

March 24, 2008

Good parent=bad parent

In the eating disorder world parents are told: "It is especially important that you don't diet. Ever." You will be looked at with sad knowingness if you thought dieting was okay and even worse if you allowed your own child to diet. You are not supposed to refer to foods as good or bad. You must not focus on BMI.

And, it turns out the eating disorder world is right about all this.

But in the rest of the world you, as a parent, will be praised for dieting. You will be chided for letting yourself go. You will be advised to keep bad foods out of your child's life and you are supposed to care deeply about childhood obesity and will be expected to restrict your child's diet if your growing child grows too much. You must focus on BMI.

Parents are doing exactly what their pediatricians and society are telling them is good parenting. Once your child gets an eating disorder they ask why you bought into all that. But who needs the scolding: a parent in crisis or the Surgeon General??

March 23, 2008

The mirror doesn't lie

The problem is based in the brain. It is debilitating, but people have a hard time understanding the problem. The solution, in many cases, is re-training the brain.

For amputees, an unlikely painkiller

And the expert who found an elegantly simple treatment has not filed for a patent nor does he hoard the information:

"He gives interested parties instructions over the phone or by e-mail"

March 20, 2008

"Don't judge"

I find it far more helpful - and pleasant - to praise what is good rather than sit around complaining about what is bad. But, there are exceptions.

"families play role in eating disorder"

Let me make this quite clear:

Parents do not cause eating disorders. Parents do not "play a role" or "contribute" to causing eating disorders. We do not have to wait for Family Week to find out what we did or didn't do wrong as a family. We did not, on the evidence of an eating disorder, fail to validate our kids or give them the right messages. We were not formerly "pretending" and not "honest." We are no more distant or domineering than other parents. An eating disorder does not mean you need to "create your own family." An eating disorder in a family member tells you nothing - NOTHING - about that family.

Parents and families with an eating disordered child do not necessarily - any more than any other family - "need healing" except from the trauma and confusion of having a child become mentally ill.

The healing that needs to go on is from generations of parents estranged from their children based on mistaken assumptions. Generations of patients have lingered in their illnesses - or worse - while loving family has been rejected or excluded when they could have been helping. Our children need healing from being held responsible for an illness that they neither chose nor could choose to stop.

You may believe that this is all very self-serving of me as a parent to say. So don't listen to me. Watch the video of experts to your right, take a look at the science, or read what the leading researchers say. It is time to stop the parent-blaming, stop the patient-blaming and rise up from a benighted era of helplessness and hopelessness about this illness.

"Don't judge," they tell us. Indeed.

March 19, 2008

Vertigo

Rachel shared this:

"My father used to take us walking in the mountains when we were children. In my teens I suddenly developed serious vertigo, and it struck first when we were walking on a knife edge in the Alps. I panicked, felt I could not go forward or back. It was terrible. My father just told me to watch the back of his head and nothing else, and walked me steadily down. I have remembered this experience often since my d's anorexia emerged. Her panic was like the irrational but overpowering fear of heights, but so much worse. Our role is to walk our children back down the mountain into safety, letting them trust us."

March 18, 2008

Suffering in multiples of seven

OK, I don't know what is worse. That there is only one clinic with a total of seven beds in all of Russia for eating disorders treatment or that even if you do get treatment it will be based on an antiquated view of the illness:

"The reasons for anorexia nervosa are complex – a combination, in many cases, of family pressure, bad relationships or simply wanting more control. There’s no denying that television, fashion models and girls in magazines play a role also."

Anorexia takes toll on Russian women

March 17, 2008

Good cheer

One of my pet peeves about eating disorders in the media is how grim recovered people appear. I understand why - we want people to take the issue seriously - but for those looking for the light at the end of the tunnel some good cheer - even some silliness might be nice.

And in that spirit may I introduce you to the recovery videos at the marvelous Half Of Us web site.

Yeah, I wish the young people would say "this is a biological illness not a choice" and I wish they'd say "parents shouldn't wait until their kids ask for help to step forward." But I'd show these clips to a recovering patient, not something I'd say about most ED media. The good cheer, the warmth, the shiny normal YOUTH of these kids is such an antidote to grimness.

Some day I'd like to create a video just of recovered people laughing, giggling, guffawing, (whole) milk from the nose laughing.

March 16, 2008

Parent organization moves forward, but needs a name

I had a pretty profound experience last week. After weeks of consulting people all over the ED-sphere, conversations with my family, fielding queries, and discussions with other parents, we held the first leadership phone conference for the new parent organization - as yet unnamed (see below).

There were nine of us on the call, and I marvelled at the reality of this coming together of parents - voices to attach to names and stories I've mostly only "known" online. Although I have talked by phone and met in person a number of people on the "Around the Dinner Table" Forum, this felt like a historic event.

We have a leadership team, a growing list of volunteers, an illustrious list of clinicians for the Advisory Board, a mission statement, some generous financial pledges, and even a post office box, but here's one thing we need: a name.

The board will vote on a name in the next week or so, but there is time to make suggestions. My idea was "The Family Dinner Table," as that expresses my sense that we are parents forming a circle to support families coming together, but some of the board hoped for a more descriptive name.

If you have a suggestion, this is the time to speak up. What would you name a parent-led organization whose goal is to support families through a child's eating disorder recovery?

March 14, 2008

the wall is really the exit

Sometimes our children come to us for help when an eating disorder threatens to drag them down. More often, parents have to take decisive action to stop the slide.

But it seems almost every patient eventually hits a wall. Where even if they want recovery - and especially if they don't - the anxiety and the discomfort and the anger get worse before they get better.

The wall, as some parents describe it, seems like a crisis. But really, that wall is actually the exit. As frightening as this escalation in anxiety and anger is, this is our chance to break the pattern of up and down and break through the wall that keeps them in the eating disorder.

My recent advice to a parent as she faced the wall:

"During my daughter's initial recovery I often felt that she was in a hurricane - blinded and in pain and almost deaf from the wind and debris. I felt I was calling to her from a distance and asking her to follow the sound of my voice - to trust me even when nothing made sense and her senses were telling her to run, run anywhere but where she was.

Be that voice."

March 13, 2008

Sleeping Beauty and the Buddha

Sleeping beauty's parents knew about the curse. They did everything they could to keep sharp objects away from her, but all it took was one.

The Buddha's parents locked him away from the world to protect him from prophesy, but one stroll outside the palace changed history.

Can we prevent eating disorders? Can we, even knowing our child has a genetic predisposition to eating disorders, keep him or her from falling ill?

No one really knows. There is a lot of effort out there to change our culture, teach good values, model healthy behaviors - but little evidence that it works in preventing an eating disorder. (Though we should be doing those things anyway, for ALL of us.) There is also a lot of tight-lipped scolding after the diagnosis for the parents and the society that seemed to fail to protect.

I'm guessing that a sliver of the number of eating disorders could be avoided if society changed, and parents became anti-ED Amazons. But if all it takes is a stray spindle (or diet), or the sight of a leper (or a subscription to Teen Vogue) to undo the work of decades of prevention...

I think if we could get the Beauty and the Gautama families in on a multi-family therapy group meeting they'd probably be more focused on treating the problem in the present than admonishing the rest of us for ending up in the same fix.

March 12, 2008

March 11, 2008

Join me at the US Capitol in April

Big news. I have been appointed Chair of the Membership Committee of the Eating Disorders Coalition 's (EDC) Family & Friends Action network.

I support EDC because it really gets things done. They work for more education about EDs, better insurance coverage, an equitable share of research funds, and for eating disorders to be included among legislative priorities. They do this for all of us, the families and sufferers.

This is my invitation to you and your family to join me on April 9 & 10 for EDC LOBBY DAY in Washington DC. I'm gathering an "Around the Dinner Table" contingent for the event.

My daughter and I did Lobby Day a few years ago. We heard Hillary Clinton talk about eating disorders and we got to meet so many fine people - some had lobbied before, most had not. This year Miss America, Kirsten Haglund, will be there lobbying along with us.

While we are there, we'll network and share a meal together. I've got a gold fork for you, and I want to hear your story and learn what you want activists like me to do.

I promise you that the EDC makes it simple and empowering. Not once will you be quizzed on what you remember from Civics class. You need no experience, no particular skills: just the willingness to join a delegation of fellow citizens to visit a legislator's office to tell your story. Legislators, it is said, respond to an issue when they get more than five citizen contacts. You will have a real impact.

Closer to the date, I'm going to ask you to support Lobby Day in other ways: by sending letters, by calling your legislators.

If you have money to donate but not time to come, contact me to sponsor someone's breakfast or defray travel costs. If you have the time to come but not the money, contact me.

I'm glad to help arrange roommates if you want to save your money for, well, meals. Live in the DC area and have a sleeper sofa - share it!

Register now: EDC LOBBY DAY, and put "Around The Dinner Table" on your name tag. Then email me so we can coordinate our contingent. Let's show Congress that our children matter, and parents care.

March 10, 2008

Eating disorders are not an amateur sport

Do you have a firm opinion on the treatment of Hemolytic Acquired Autoimmune Anemia? Feel qualified to make pronouncements on the definitive treatment of Ameloblastic Carcinoma? Is there some reason why the parent of a child diagnosed with Pityriasis Rubra Pilaris should trust your opinion on conventional and innovative treatments?

I thought not. Yet every human being on the planet feels like an expert on eating disorders:

March 9, 2008

Let's talk about sex

One of the ugliest moments in the down-the-rabbit-hole experience of having a child diagnosed with an eating disorder is the realization that you - until that moment a normal parent - are automatically now under suspicion of having either sexually abused your child or of having let that happen.

I was present the moment my husband first heard that connection. I remember when I first realized that was on the mind of the clinicians we consulted. I really can't think of a more disabling position for a parent seeking help.

So I approach this topic with trepidation. And I read reports of research, Childhood Sexual Abuse Linked With Bulimia Later in Life, with care.

Take-home points: no connection between anorexia and sexual abuse. And in the case of bulimic behaviors we need to be very careful about retrospective self-reports, wide definitions of abuse, and wide definitions of bulimic behaviors. But no matter how you slice it, the baseline of one in five young women reporting sexual abuse is beyond heartbreaking.

And regardless of whether adult trespass can trigger bulimic behaviors, or if people with a predisposition for bulimia are at special risk for interpreting behaviors as abuse -- "1 in 2" is crushingly, horribly sad.

March 7, 2008

An Uncertain Inheritance

From a review of An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey.

"Today’s caregivers are likely to find themselves peculiarly alone, exiles from the busy, heedless life around them in what the writers in this book variously call “a black hole of time and energy,” a “Black Balloon,” “our own little prison,” “Planet Autism” and “this unfamiliar country with different weathers, different rules.”

March 6, 2008

Organ failure

We believe liver damage causes jaundice, that asthma makes it hard to breathe, even that a bonk on the head causes disorientation. Yet we resist believing that depriving the brain of nutrients can cause disordered thinking or beliefs.

We insist that in order for a person to believe something it must have been learned or chosen or based on fact.

The study of body image distortion has much to teach us. Replace the words in this article: Do You Hate That Face in the Mirror? with a conviction that one is "fat."

March 4, 2008

sunrise, sunset

Some interesting work in the Czech Republic:
Normalizing effect of bright light therapy on temperature circadian rhythm in patients with eating disorders
CONCLUSION: The light therapy normalized temperature circadian rhythm in patient with eating disorders. We hypothesize that the light therapy can also contribute to improvement of pathological eating pattern because of the functional connections between light and food entrained oscillators. The light may help to restore the irregular circadian rhythmicity induced by chaotic food intake.

March 3, 2008

Parents supporting parents

I believe in peer support. The ideal is a choice of support options in one's community, but that is a rare luxury - especially if the situation you are facing only touches a small percentage of the population.

Online forums have increasingly taken their place among the tools patients and their families draw on for support and information. Moderated and unmoderated, sometimes weird, often wonderful, and unfortunately at times the only peer resource for isolated families, online forums are a growing movement in information sharing and community.

PDHeart for parents of pediatric heart disease
Aspergers and autism
Pediatric oncology forums for parents
Children's Liver Disease
Child bipolar illness
And the best news of all: places like the University of Chicago Eating Disorder program researching online support for parents in Family-Based Treatment.

And of course, there is the "Around The Dinner Table" Forum for parents of eating disorder patients.