June 30, 2008

Put worry on the to-do list

Many thanks to the ANAD Broward blog for calling my attention to the Wall Street Journal article, "When Fretting is in your DNA."

It is well established that eating disorders are more common in people who struggle with anxiety and/or depression. People tend to look at biological tendencies as destiny, but I never have. Knowing what your natural temperament is just gives you a starting point, an owner's manual. What you do with that is far more fluid:

"just because rumination has genetic roots doesn't mean it's inescapable...People can learn to stop these thought processes and have better emotional health."

"He suggests literally reserving 20 minutes a day to worry. If you can postpone worrying, you are exercising control over it, rather than letting it control you."

June 27, 2008

20 years is a generation of ill-served patients

They say it takes 20 years for research findings to find their way into clinical practice. That's a whole generation of patients whose illnesses will be mismanaged not for lack of knowledge but for lack of communication.

Keep this in mind when you sheepishly approach a clinician with a print-out from the Internet: you may indeed know something the doctor hasn't heard yet. And with eating disorders, even experienced clinicians may not be familiar with current science and thinking in the field.

It helps if your print-outs come from good sources, like this piece in the US National Institutes of Health Medline Plus magazine.

June 24, 2008

become a member of F.E.A.S.T.

I am very happy to announce that FEAST is now a membership organization!

The FEAST Parent Council wants to know what parents and caregivers need and want - we invite you to be counted as a member of F.E.A.S.T. by filling out the form on the website:

JOIN FEAST

Membership is free, and you are welcome to give us only the information you care to share. All information will remain private and will not be distributed.

We welcome parents, caregivers, clinicians and professionals, and patients/former patients to join us.

It only takes a moment - WELCOME to FEAST!

June 23, 2008

Is ADHD An Advantage For Nomadic Tribesmen?

Not everyone believes in evolution as a principle. Still more people believe in it, but don't really understand it.

I used to live in a Mediterranean country where evolution was taught as a concept that had been once believed but was now disproved - which is a pretty neat way of dealing with a troublesome church/state issue: by making science seem quaint and out of date instead of modern and helpful.

I find evolution endlessly fascinating, myself. And the ideas of evolutionary biology very helpful. One of the most interesting books I've read recently is "Survival of the Sickest" by Sharon Moalem, with a darn good set of theories of "why we need disease."

A friend recently pointed me toward "Is ADHD An Advantage For Nomadic Tribesmen? and it reminds me of Shan Guisinger's writings on the evolutionary role for anorexia.

June 22, 2008

Cyclist tells of battle to beat bulimia - Scotsman.com News

Another example of how we speak differently about male eating disorders and female eating disorders. With women we often talk about wanting to control something, about horrible life events, pressure from outside.

With men the language often is about trying to make weight for a sport or activity: which is more mechanical and more internal.

It is the same illness. An increased focus on males with EDs, and the absence of the usual psychobabble, will be good for the whole conversation about eating disorders.

June 21, 2008

Mark your calendar: Austin, September

Where will you be September 17-20, 2008?

I will be at the annual National Eating Disorders Association conference in Austin, Texas.

I've been told, by leaders in the field, that the missing element in getting more research and better public policy on EDs is families. Parents are often too beaten down, exhausted, alienated, or just plain mad while their child is in recovery - and afterward: just want to get back to normal life.

I believe that by staying involved, volunteering, being vocal, and making relationships we parents can influence policy and public opinion and funding. But we have to show up. Maybe not every day, or every event, or even more than once - but every time a parent shows up, it helps.

This conference is the biggest yearly event in the US, perhaps the world, and it is for everyone: families, clinicians, researchers. There are classes, events, documentary screening, and a chance for parents to meet the people who do the research, make policy, write books, talk to the media, and treat patients. Participants are very accessible and available to chat. People debate and discuss and comfort and share. If you care about the treatment of eating disorders, this is a chance to learn and to have your say.

This year, F.E.A.S.T. will be an exhibitor at the conference, so we'll be easy to find. I love meeting fellow parents, learning their stories, finding out what they want and what matters to them.

F.E.A.S.T. will also hold a membership meeting on Thursday afternoon - all parents are invited, as well as our Advisory Panel. This is a chance to actually meet in person some of the people we mostly "know" online.

Please come to Austin if you can. Come for a day or the whole conference. Come for yourself, and come to show that you care about these issues and that parents want to be part of the policy-making and thinking on eating disorders.

June 20, 2008

blogxygen: From Behind Bars, Part XIV

If you've read our family story, you know that my daughter was never in a residential program, so who am I to say, but was my parenting somehow incomplete without doing a ropes course?

blogxygen: From Behind Bars, Part XIV, on Family Therapy

June 19, 2008

Access Project

Medical debt is a huge problem in the US (interesting two-part feature on the M&J show: ONE and TWO). This is not a disease-specific problem, of course - families go into debt over chemo and emergency room visits and buying life-saving drugs. But with mental illness, the problem is even worse.

First, because patients and their families don't have good ways to know how much treatment will cost in advance. Second, because insurance coverage limits who we can consult and limits coverage for things that can't be found in a test tube.

But perhaps worst of all: stigma and lack of understanding of psychiatric treatment keeps families from seeking help. Faced with high costs, a family may be tempted to defer or stop treatment early. With cancer or diabetes, few people would do that - but anorexia and bulimia make families feel as if treatment may be useless and that treatment is optional.

We must, as a society, address how to make sure everyone gets the medical care they need. If you are interested in moving mental health parity forward, get involved with the Eating Disorders Coalition. If you are struggling, check out The Access Project for information on negotiating bills and getting help.

If you are delaying or settling for inadequate care because of money, don't. Your child's life and future are priceless, and eating disorders ARE treatable and beatable.

June 18, 2008

Happy One Year Anniversary, E.B.!

After a recent NPR interview, the interviewer told me she got email wanting to hear from my daughter on how she felt about having her choice to eat - or not eat - taken away. For the record, my daughter hated Family-Based Maudsley treatment during recovery and is a big supporter now. But I am often asked, with a tone of disapproval, for my daughter's opinion.

What is really interesting is how often I hear from patients who wish their parents had, or would, take a stand against ED and "make me eat." I hear from patients thankful that their parents or loved one "tied them to the mast."

One recent letter, thanking parents for the "Around The Dinner Table" forum sponsored by FEAST:

"This board has really encouraged me.

...It always shocked me that my parents weren't rushing me to hospitals or reading book after book on my 'condition'. However, I see now that that just wasn't how they were going to help or not help me. And they weren't cold and heartless! - they were very worried I now know and wanted more than anything for me to be healthy and happy.

I don't know if there are others like me here - but don't discredit those who are seeking help for themselves. They may not have parents or healthcare available to them... I don't know what the exact point of my post is. But I am celebrating a landmark for myself, a year of recovering, and I have been to this forum a lot along the way.

...The Maudsley method is so assuring... I truly believe in restoring the bodies health first and foremost. I mean no wonder women can go to therapy for years and years in a malnourished state and never get better - what good does the therapy do if they are not nourished enough to logically digest it?? ( no pun!!)

Anyway.

...You parents are good to your kids. If my parents had reigned me in and administered this care for me, I probably would have gone along with the kicking and screaming and then the improvement - but it didn't happen that way so I did all this within myself - and with God, of course. I feel like I'm a part of this forum, although I know you want to keep it just for parents. I know that's important and I understand it.

Okay - thanks maudsley people. onward!
E.B. "

Happy one year anniversary, E.B.!

June 17, 2008

Hunger Hormone Increases During Stress, May Have Antidepressant Effect

I get irritable when I go too long between meals. I feel anxious and depressed if I under eat over a number of days. Dieting, which once upon a time I thought of as a rational thing, made me cry uncontrollably and without warning.

My daughter gets really focused if she goes a while between meals. Her anxiety, usually higher than most people's, goes down when she under eats. Anxiety and depression are replaced with steely determination and a false sense of well-being when she loses weight.

This difference between me and my daughter used to baffle me. I expected her to respond to hunger the way I did. I'm sure I used to baffle her, too.

But now that I understand the self-medicating nature of malnutrition, especially for those with that predisposition, her anorexia makes a lot more sense. And her recovery seems even more heroic. I can just pick up a sandwich; for her it meant picking up and wrestling down anxiety and depression.

June 16, 2008

It's not their fault either

My intended audience in this blog is parents, but sometimes the message of "it's not your fault" gets confused and people think I'm just shifting the responsibility to the patient. I'm not. My daughter's illness was not her choice or her fault.

Her recovery, however - with the unyielding help of her family and savvy clinicians - is uniquely and heroically hers.

That's another mistake we make: thinking that because the illness isn't some one's fault and some one's choice that RECOVERY is also no one's responsibility or triumph.

Recovery, when the same traits that predispose you to the illness also keep you in it, is to be credited to the survivor and the caregivers, absolutely.

June 15, 2008

The other four of you are off the hook

"almost a fifth of teens affected by eating disorders"

No, no, no. This makes me nuts. This expanding of the illness so that it is an epidemic and everyone has it and we can prevent it if we just talk sense to young people....

Eating disturbance and restrictive eating and body image issues are not the same as an eating disorder (though they are warning signs and can trigger a real ED in someone with a predisposition to have one).

Calling anything disordered an eating disorder is a grievous insult to those struggling with eating disorders. This rush to call us all pathological isn't helpful: it minimizes the genuine anguish and mind-bending difficulty of recovery. I realize this is all in the name of empathy and fellowship and "we feel your pain" but really we don't.

Eating disorders are too common, yes, but we really do not know if they are increasing or decreasing in prevalence. Yet why would it need to be an epidemic to deserve our attention and full-on support?

(The first headline above doesn't match the research, though. If you read beyond the headline - and few will - or go to the original paper there is interesting information here. The trigger of anxiety, for example.)

June 14, 2008

Guys and bone health

We talk a lot about bone damage from eating disorders, but we mostly talk about women. Time to talk about men, too:

High risk of osteoporosis in male patients

"Males... often have severe bone disease, which is worse than females, and is best predicted by a patient's lowest BMI and illness duration."

June 13, 2008

Eating Disorders = Addiction?

I started out, back when I first met ED, being offended by people who subscribed to the "addiction model" of causation. I think I thought of addictions as creepy and having a lot to do with lack of will. I've known people whose lives were trashed by "substances" - I was angered by them and their inability to pull out no matter what happened. And I was so proud of those who pulled themselves out.

I think I also couldn't cope with people looking at my daughter as an addict.

Over time I had to change my thinking. But not about eating disorders - about addiction. I realize now, watching people with addictions and people with eating disorders that they are experiencing something awfully similar. It seems clear that addiction isn't a lack of will, and recovery is not simply a matter of wanting it enough.

I don't know whether I believe in the addiction model, and I'm seriously skeptical about 12-step treatment, but clearly it is a conversation we all should be having.

June 12, 2008

Addicted to Starvation: The Neurological Roots of Anorexia

Without reservation, I think this is the best article written for the public to explain the current science on anorexia so far, ever:

Addicted to Starvation: The Neurological Roots of Anorexia: Scientific American

Bravo to Gura, to Scientific American, for a real, science-based overview.

To parents new to this: read this article FIRST.

June 9, 2008

Ceased to exist as a person

"I've ceased to exist as a person."

I'm an exhausted caregiver on the point of collapse

Different situation, same exhaustion.

If you are caring for a person recovering from an eating disorder you cannot just be getting by - you need all the respite, support, and resources as someone caring for a patient with cancer or recovering from a grave injury.

Call in the troops, call in all the IOUs, all the "if there is ever" "can I help" "would it help if I..." Be specific. Be proud that you are modelling for your children what to do in an emergency: get help.

Don't let pride, inertia, or fear of stigma get in the way of asking for what you need and want. Treat yourself as you would treat your best friend going through the same thing.

And consider these tools for creating a support network for your family:
http://www.CaringBridge.org
http://www.CarePages.com

June 6, 2008

asthma and air pollution

Asthma is worsened by air pollution. If we could eradicate air pollution there would be less asthma.

Eating disorders are worsened by a dieting culture. If we could eradicate our dieting culture there would be fewer eating disorders, right?

I'm all for fighting our diet-obsessed, body image deflating culture - let's do it because it is sucking the soul and health from the whole population. Let's do it so that we can better recognize and better respond to people with genuine eating disorders.

But if all it takes to trigger an eating disorder, for those with certain biological makeup, is a brief diet or the flu or conditioning for the cross country team, then all the body image awareness and positivity isn't going to prevent it.

Less toxic air. Fewer toxic body images. But let's not misplace the nebulizers and the forks.

June 5, 2008

my poor child

In response to yesterday's blog post, BBMI, I received the following from an anonymous reader:

"Laura, You really need to step back from this a little. I've never seen a parent more intent on making her poor child out to have a mental disease. It is not biologically plausible for 10-25% of young people (namely girls) in industrialized cultures to suddenly have brain disorders... that almost universally (but for very rare exceptions of psychiatric problems or cases among third world cultures exposed to industrialized weight ideals) appear after dieting and weight/body obsessions."

I know nothing about you, Anonymous, but I'm guessing that you are not a parent who has had to seek and pay for care for a loved one with an eating disorder. To have an illness that at very high rates kills or maims its victims, that distorts reality to the point of delusion, that rejects help and perceives the experience as a choice - treated by medical and psychiatric resources with 20 outpatient visits because it isn't a "real illness."

I'm guessing that you have not looked at a young loved one whose life is being destroyed and known that despite medical experts wanting to help - you can't pay the bill until the illness has put them near death or irretrievably ill.

You probably didn't spend your retirement fund, lose the equity on your home, lose your job, or make another sibling go without college tuition in order to save a life of a beloved child.

But you are right that most eating disorders are preceded by a diet.

Perhaps you don't understand that the brain is damaged by dieting. Perhaps you don't understand that dieting causes malnutrition that for certain people drives disordered thoughts and behaviors, destoys self-esteem, and distorts body image.

My "poor" child finds knowing her illness for what it is - a TREATABLE brain disorder - a freedom, not a restriction. She likes knowing that her recovery was acknowledged as truly heroic and HARD and not self-inflicted. She doesn't need your pity - and she doesn't have mine.

Lots of illnesses - ADHD, OCD, heart disease, schizophrenia, diabetes, asthma - have environmental triggers and respond to societal changes. ED clearly does, too. But no one objects to calling them biologically based illness. No one questions whether care should be covered.

Here's why I don't "step back," Anonymous. Because parents need to know the truth in order to get and pay for and support good care. We need to be fully engaged and not passive or guilt-ridden or blaming our kids.

This is the hardest work most of us will ever do. Knowing that this is a real brain disease helps. Insurance coverage helps.

(Anorexia, bulimia, and EDNOS do not strike 10-20% of the population - not even the youth population. I fear you are conflating - and this is common - the subclinical disturbances throughout society with frank mental illness. You may be adding in BED to get that figure.)

June 4, 2008

BBMI

What a marvelously ambiguous title:
Aetna Agrees to Treat Eating Disorders Like Mental Illness

It IS an mental illness: meaning it is a biologically based disease. Not because of the physical ravages of malnutrition, bingeing, or purging that the patient has chosen to do - but because something is wrong with brain function.

Aetna is agreeing - though the deal's not done yet - to treat anorexia and bulimia for what they are: devastating conditions that require intervention. Not a choice. Not a bad habit. Not self-destructive impulses.

A real brain disease that is TREATABLE. And that is the business of health insurance, no?

June 3, 2008

Listening to the patient

Our culture values the act of listening. We praise the ability to listen and hear and empathize. Parents, especially, are supposed to listen to our children.

But with an eating disorder, listening is a problem. EDs mangle self-image, self-esteem, and how the patient hears our concern and attempts to protect. Like any human being, they want to be heard, and they find meaning in their struggle.

As parents, how can we not listen? But eating disorders lie to the sufferer, so how is it best to listen?

Eating Disorders in a Disordered Culture: Stories Told

June 2, 2008

Light a candle for Rachel

Anorexia took Rachel at nine years old. Her mother would be comforted if parents would join her around the world in lighting a candle on the first anniversary of this great loss: Thursday, June 5.

Her mother's words.

For a thread on the Around the Dinner Table forum.

phantom flesh

Are you searching for ways to explain the distorted body image that characterizes most eating disorders?

I like to bring up the phenomenon of phantom extra limbs.

I think it is hard for people to understand that the patient is not exaggerating or overvaluing body size and appearance - though it may sound like the same stuff all of us say and do. I believe the experience of BDD - which seems to occur in many ED patients especially while malnourished - is similar if not the same as phantom extra limbs. And while some people experience this phantom flesh in a delusional way (can not see that it is an illusion) many people struggle to reconcile what they know is not real with what they truly see and feel.

Need further proof that brain function can cause thoughts and behaviors that have nothing to do with free will or experience? How about "gourmand syndrome."

June 1, 2008

Contribute to the maintenance

Parents don't cause eating disorders, and patients don't choose them.

But once you've got an eating disorder in the family, our reaction as parents matters. We can help, or we can harm, and if we do nothing we leave our child alone with an abuser who is unlikely to leave on his own.

I like the phrase "contribute to the maintenance." As loving caregivers, our VERY NATURAL emotional reactions can serve the eating disorder's design. We must know our enemy (ED), and know ourselves.

Assessment of the Family of People with Eating Disorders