April 30, 2012

The dreaded "should" and the Serenity Prayer

The most useful concept I ever learned in therapy* was letting go of the "shoulds." This was a tremendous struggle for me. I had a lot of "shoulds."

Children should be tucked in at night.
We should keep the house clean.
People shouldn't litter.
Everyone should volunteer and donate to charity.
Couples should talk everything out.
Parents should keep their kids from getting mentally ill.

With advanced age I get that those are not "shoulds" and that life really only has a few of them. Unconditional love for those in our care. Have good intentions. Try. That may be it.

The Serenity Prayer SO helps. I've let go of so many SHOULDs, and find it helps me feel proud of everything else instead of trapped by it. Lately I'm letting go of shoulds like crazy and it feels good. Adding WANTS.

*YES, I have been in therapy before - my beef is with bad therapy - I'm a big fan of therapy.

April 29, 2012

Good will hunting

How much control do we have over our actions?

People with addictions and mental illness used to strike me as people who just weren't trying hard enough. Sure, they may have had special challenges - bad luck and trauma and difficult lives - but I was sure that despite any challenges that if one wanted it enough one could and SHOULD be able to get control and take care of him or herself.

Eventually I came to understand there were biological elements to these conditions. That knowledge didn't really help, however: I still thought there was choice involved. I thought will power was involved, and although I admired those who kicked the habit or struggled out of depression or regained stability from bipolar illness here's what's telling: I still felt anger and disdain for those who did not. When I knew of someone who lost their job or children because of erratic behaviors I blamed them. I felt they had a choice; perhaps a harder choice than someone without that biology but still, that was only a part.

Strokes seemed different. I recognized that someone with brain damage was genuinely not able to control their thoughts and behaviors.

Now I'm ashamed I used to think that way. I've come so far. The best part is that I truly do understand the thinking of those who still see people with mental health problems as operating independently. I get it that people don't understand how impairing it is to have a mental illness and how wrong it is to regard these conditions as a matter of will power.

There is a role for will power and choice but I think it is fair to assume that people are doing the best they CAN, and that they want to be happy and well as much as we want them to.

I know some people think of a mental health diagnosis, and seeing that diagnosis as saying something is wrong with the brain, as stigmatizing and negative. This is a stage in our society's evolving thinking, an understandable stage, but a tragic one. Until we understand that something is wrong with the brain we will continue to blame the patient and expect the patient to think their way out of their illness.

April 26, 2012

Dinner, Austin, Wednesday?


OK, so who is going to AED in Austin and wants to gather a mob for dinner on Wednesday? Because THESE Austins aren't invited.

April 25, 2012

Karaoke chemo

How do you celebrate your first chemotherapy appointment?

Karaoke at chemo at my local hospital.

Now that's living!

Graphic content

Stare at this for a moment and see how many fallacies you can name:

Thin = fruits and vegetables
Fat = carbohydrates and fats
Thin = healthy
Fat = unhealthy
Thin = attractive
Fat = unattractive

I'm sure the artist had the best of intentions and believes the above ideas -- most people do these days. I'd like to put the artist at the table of a family who is trying to raise a young person with a predisposition for an eating disorder. Or even a family without that, just one that believes in a balanced approach to eating and does not engage in size-shaming.

Now let's see: who is posting this graphic? Yes, a hospital.

But, here's the good news: you can comment on Facebook.

UPDATE: The hospital has pulled down the image and apologized. The image came - thank you to anonymous for finding this - from a years-old DVD cover by an organization promoting vegetarianism. See comments for link.

April 24, 2012

Herd thinking

A cautionary tale for all of us about public thinking about a real illness. And yes, I do think that some of the public misconceptions about eating disorders is JUST THIS WRONG. Celebrities can say anything, and anyone can call themselves an expert, and any opinion goes.

April 23, 2012

Born this way?

More coverage of recent brain research reveals interesting dynamics between the way we look at these illnesses. Nature and nurture, but how much of which?


ANOREXIA LINKED TO BRAIN PROBLEM, OFFERING NEW HOPE IT CAN BE TREATED



We are moving on from the either/or argument, I believe, and on to a more interesting conversation of how much, and for whom. Then let's really get on to what we can change about nature and nurture to help prevent, lessen, and cure eating disorders.

April 20, 2012

C'est vrai!

It has come to that. I am blogging an amusing cat video...




Thank you, Robin. I needed that.

AMA training on eating disorders excludes mention of Maudsley

Does anyone else notice that the new

EPoCH CME: Screening and Managing Eating Disorders in Primary Practice

Training for primary care doctors doesn't list Family-Based Treatment (Maudsley) as an evidence-based approach for eating disorder treatment?

It lists CBT, and DBT (which hasn't been well-validated for use specifically with eating disorders), but not FBT.

Did it slip off the bottom of the slide? 

banning pro-ana

Okay, so now let me upset friends and foes alike.

I am not at all interested in whether Pinterest, Tumblr, or Instagram, or anyone else bans "Thinspo" and pro-ana materials.

1.   You can't clean the internet
2.   Parents are in charge of what their children access
3.   This stuff is symptom, not cause

I understand the worry over it, but the objections -- and then the objection to the objections -- are mired in just plain wrong-headedness about EDs.

The amount of horror and energy that people put into banning this stuff is better spent elsewhere, in my opinion. All this media attention is only serving to bring more young people to that material. Plus, the prurient media attention is yet another excuse to show thin people - the media loves that - and is only meant to shock, not educate.

The ANGER generated toward these sad people and their sad sites feels really inappropriate to me. They're ill.

What bothers me most is the belief out there that pictures and disordered ideas on the Internet will spread or cause eating disorders. Images don't cause, inspire, promote, permit, or spread mental illness. Do sites about UFOs cause schizophrenic delusions or soap commercials cause germ phobia? The people creating and consuming pro-ana and pro-mia stuff are often quite ill, and that is sad, but they're not causing other people to be ill - they're providing a scratch to the itch that ill people are feeling.

"Thinspiration" and pro-ana stuff is symptom, not cause. I don't look at it because it is upsetting to see the pain and distortions of mental illness and feel helpless to help the sufferer.

Look at it this way: if someone is telling us that they are in pain, or see little green men in the bathtub, or have terror of their own body size, does it help to say "Stop feeling that!" "Stop telling me that!" "Those are unacceptable thoughts!"

No, we don't. We feel sympathy and, if possible, we try to help. When we can't - because the people are anonymous and unreachable - we respectfully avert our eyes.

P.S. Why am I writing about it here? Because I'm getting more and more media queries and forwarded messages from friends and family because of media on it.

April 18, 2012

1500th post celebrates ACTION and collaboration


This is my 1500th post on this blog. I set aside my writing career after my daughter's illness to do this work and I enjoy this unexpectedly satisfying outlet.

Today I celebrate with one of the greatest functions of a blog: linking to the information and calls to action out there. Back when I started this blog there wasn't that much of a network of online activism - few blogs, little social networking, no Twitter, and few comments on online articles. Now, a bad news piece brings immediate response and campaigns can  start in hours.

Fitting, then, that the Eating Disorders COALITION acted quickly and effectively on a horrific news article and then immediately enlisted US to act:

The "K&E Diet" is Wrong

Celebrate with me, by taking ACTION with EDC.

April 17, 2012

Fresh face!

The F.E.A.S.T. front page has a new look! Our webmaster, Leah, created an inviting and easy to navigate entryway for the website which has been revamped and organized:



Thank you, Leah!!!!!!!!!!!!!

April 13, 2012

Speaking of language, watch your verbs

I note with fascination what verbs and verbiage surrounds talk of eating disorders.

Celebrities are said to be Glorifying eating disorders, they "slam accusations, and another actually sues news outlets when she  Denies Eating Disorder Accusations. A long dead celebrity is "defended" against posthumous reports of his bulimia, and another professes chronic "frustration." The list of "accused" is like a Who's Who of B-list celebrity itself. The ugly truth is that we're talking about the fine line between denying and self-promotion.

More frightening is that the denials are in the form of affront: it is an insult to say that someone has an eating disorder. It is not concern for that person, or empathy, it is disdain. It has the same flavor as the public glee and relish over celebrities having "work done."

Sad to report, these "accusations" and "denials" always involve weight loss - and only involve weight loss - as if an eating disorder is just a matter of someone having the poor taste to want to be too thin.

Correction: weight loss is not an eating disorder, and an eating disorder is a treatable problem in the brain and not a condition to be pitied or criticized. Imagine this kind of language around cancer or MS.

No wonder families worry about "who to tell" and about the stigma of an eating disorder. Society has layers and layers of mistaken beliefs, and verbs.

April 11, 2012

What language means to you

I'm preparing a slide for my presentation at the upcoming AED conference in Austin. My job is to explain why the parent community finds biological explanations for eating disorders more helpful than other terms. I've heard hundreds of such comments over the years and want to share some of these quotes to an audience that is skeptical.

I want your quotes!

Why do YOU find biological language helpful, if you do? What "lightbulb" moments have you experienced about this? When was the first time you heard that EDs might have a biological basis?

Make them short, and tell me who I can say said them, e.g.

"When I realized our son's strange behavior was something wrong in his brain I stopped being angry and started giving him the support he needed to get well." B. R., Oregon

"The Minnesota Study changed everything for me. It was about the food, at least for a while." T.T., Brisbane


P.S. No, I'm not saying or asking you to say that experience, environment and parenting don't matter. Just what role biological, genetic, nutritional, brain circuitry, brain chemistry, brain anatomy, etc. play in your attitudes and your actions around your loved one's eating disorder or your own eating disorder or your clients' eating disorder.

April 10, 2012

UK Families of Male Eating Disorder Patients

If you are the family of a male patient with anorexia in the UK, a TV news show would like to interview you.

If you are interested, please write me as soon as possible (the show is Thursday of this week).

As always, F.E.A.S.T. encourages parents to consider media queries but to do so with caution. From our media page:

The F.E.A.S.T. Speaker's Bureau volunteers are members who have agreed to consider media interviews. We do not endorse or investigate the credentials of journalists; we are passing on these queries as a courtesy and in hopes of getting parent voices into the media discussion of eating disorders.
While F.E.A.S.T. is eager to add caregiver-oriented voices to the public view of eating disorders, we also want to encourage responsible journalism and caution interviewees of potential issues.
•   Families can refuse to participate in exploitive or sensationalist interviews
•   Parents can ask for anonymity for themselves and their children, or use pseudonyms
•   Parents can refuse to answer questions about medical details like weights, and refuse to provide pictures of a patient when gravely ill
•   Before/After photos of patients are a potentially harmful visual cliché that misleads the public about a mental illness that cannot be understood by appearance
•   Families can ask for details of the planned piece, but need to know that there is no guarantee that the original vision will apply to the finished product
•   Journalists are rarely familiar with the stigma, history, or issues involved with eating disorders, and may hold antiquated ideas
•   Eating disorders are complex, but media reports are by design very simple and may miss important points
•   Parents should think through all possible consequences of public scrutiny of family and patient before agreeing to an interview
•   No family should feel pressured to do interviews or answer questions that cause them discomfort
For more information on media responsibility, please read NEDA’s Tips for Responsible Media Coverage.

April 2, 2012

Spoiled!!

Is it wrong that I'm on vacation with the family in the greatest city on earth with such freedom and fun to be had but the biggest grin I got as we left the house yesterday was thinking about not having to cook or clean for a week?

Not that I do either well or much!