January 31, 2015

Eating With Your Anorexic reissued

In a fresh start to the new year, I am delighted to announce publication of an updated version of my memoir, Eating With Your Anorexic. It has a new foreword, by Dr. Cindy Bulik, a new cover, and annotations reflecting on the last 10 years of being an eating disorder activist.

In 2004, I knew no one in the eating disorder world. I had no voice but that of one mom both amused and angry at the state of  treatment and research. Each of you, dear mothers and fathers, have that one voice. I've found it both satisfying and terribly frustrating to use mine. It's been an honor to do so alongside so many other fierce and fascinating people: parents and patients and clinicians and researchers.

Also, for those interested in my other work, visit the new website: LMWriter.com where you can read a poem about hair, see me tap dancing, and learn why you shouldn't put me on your gift list.

January 28, 2015

Epigenetics: old parent blaming in new shape?

stretch! stretch!
I note with interest, reminded by a lovely snarker in comments on my last post, the new interest in epigenetics and eating disorders. It's coming up all over the place.

I'm fascinated by epigenetics and the promise that it will yield insights into the underpinnings of eating disorders and human health in general. This is some of the most exciting stuff in medicine right now.

I'm amused by those who were not all that interested in genetics before but have leapfrogged over the well-known 53-83% heritability factor for eating disorders and jumped headfirst into epigenetics in a sort of "see! see! you parents DO cause eating disorders" late embrace of science.

Most people who are interested in the promise of epigenetics are genuinely interested in the role of environment and predisposition. Even the role of parenting. I am.

Some, however, are just unable -- even in denial, maybe? -- to accept that eating disorders are really not a sign of society's ills and parental perfidy. Do some parents suck? Yes. Do some parents of eating disorder patients suck? Duh. But are the symptoms of eating disorders a reflection of a person's  parenting? Not that we know of. So why do we keep going back to THAT aspect of environment, I wonder?

Epigenetics is not the Usual Suspect that you are looking for. There is still no reason to think that an eating disorder diagnosis says ANYTHING about the parents or the sufferer's life. It's just a diagnosis. It's a real brain disorder that ravages lives and families but can be successfully treated by those with genuine and complex interest in the science.

Here's the litmus test. If you didn't believe in genetics and EDs before, you think parents are probably contributing to the causation of most eating disorders, you think eating disorder sufferers are telling us something about society and families, then you may just not be as interested in epigenetics as you think.

January 26, 2015

Really? Really? How far have we come, really?

I have been at this ED advocacy long enough to have seen a lot of people come and go. Early on I assumed I would move on pretty quickly. I honestly and naively believed that the top issues I feel most passionate about could and would be solved if only people stepped up and made them a priority.

But I realize not much has been achieved. I know, I know: we've done so much. But I guess there was far more to be done than I'd considered.

I thought by now that:

  • The link between nourishment and the psychological symptoms of an eating disorder would be obvious and well-incorporated into treatment.
  • Parents would not have to fight to be included in, not to mention not be pathologized, in the treatment of their beloved children.
  • Standards for care based on current science would exist and be followed, and those who did not do so would be under pressure to do so
  • Nature and nurture would be understood as part of causing the illness but not in equal measure
  • Environment would be understood to include nutrition
  • EDs would be seen more like OCDs, where the "environment" part of the picture would influence the presentation but not the core disorder
  • Patients would have a range of options for treatment which would be coordinated and share common principles
We're not there, though. We're still fighting over basic stuff.

Progress is good. No, it's welcome and great. But jeez Louise, it is slow.

January 23, 2015

multi-syllabic way of saying “we don’t know:” Insel

As usual, I cheer all the way through Thomas Insel's thoughtful and meaningful blog posts. His most recent, What Caused This To Happen, is a good example. It is okay to say "we don't know." In fact, when it comes to issues of such import to so many we damned well better start saying "we don't know" when we don't.

rorschach blot
Mental illness treatment is way too comfortable with offering answers to questions that haven't even been properly formed not to mention answered. Our clinical environment is resplendent with answers that have little or no basis.

Most mental health care out there is baseless. It's well-intentioned and deeply believed but absolutely without grounding and the public deserves to know it. If we were to stop paying for and spending time on anything but that which has been clearly established I wonder:

1.    Would the burden of mental illness be much affected?
2.    What would happen to all the resources saved?

The problem with "not knowing" is less the lack of knowledge -- that leads the way to finding solutions -- but the burden of all the treatment that is based on false knowing. There is far too much unaccountable certainty and hubris: being motivated by genuine caring, this is the most dangerous care of all.

yes, this is what you think it is.
I'm not saying that treatment has to be well-researched to be of value. I'm saying that not knowing the difference is a disservice to the point of cruelty because in the end it is the patient who suffers and is blamed for not getting better. We are failing sufferers of mental illness in so many ways.

We need to get comfortable with saying "we don't know." Only then can we see clearly what we do know and make a better map to look for answers.

P.S. in the interest of "keeping it real" must note that while Dr. Insel's blog is up to date the NIMH site is not. The eating disorders page is pre DSM5 and while not terrible is still riddled with thinking of the past about EDs. If it was written more to the tune of the Anxiety Disorders page (also a bit out of date) I would be happier. The NIMH should be cutting edge in all ways. Advocates and activists need our top experts to walk the walk for the public so that we can refer people to them with confidence.




January 19, 2015

be nice, but not too nice.

Most of us have read Martin Luther King, Jr.'s Letter from Birmingham Jail. If you haven't it is well worth it.

What I went looking for today, on MLK Day, was the editorial that King was responding to when he wrote that letter. That letter is terrifying, really, in retrospect. Not because it says anything frightening but because it is meant to seem reasonable and appropriate. These were moderates, allies in their way.

This is a lesson that activists have to learn. Do not judge your cause by its critics. Do not work too hard to make sure people find your message pleasing or even that they understand it. Do not gauge your success by how offended it may make those who resist.

And this: take care not to dilute your beliefs even to allies. One of the most lasting legacies of MLK came out of a letter not to his enemies but to those who were the moderates about his cause.

The guide to activism is the cause. The judge of your methods is your own conscience. Success is not declared by winning people over but by actual change.


January 14, 2015

SOCK IT TO ED!

Socks? What does that have to do with ED?

Who is ED?

Suffice it to say that ED won't like it and you will. Read on.

SOCK IT TO ED.

"United effort for a common goal"

January 13, 2015

Charlotte: One Year anniversary

Charlotte Bevan died one year ago today. Since then her friends have done what she wanted: got on with getting things done to improve life for families facing eating disorders. Specifically, we have supported the Charlotte's Helix project named for her.

Today's Helix blog post reviews the news and accomplishments of the year. Read it (and don't weep). Gratitude and hugs to the marvelous people, especially to Erica Husain and the other wonderful Trustees, to Kings College London's DNA team, and to Cindy Bulik at UNC. And to Charlotte and her marvelous family.

Sometimes people just have to make something happen.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." Margaret Meade*

*Actually, it wasn't. But everyone thinks it was. It could have been Charlotte, though!