Laura Collins Lyster-Mensh's Blog, page 12

The advocacy of the unsaid

I love Miss Manners. One of my favorite columns involved how to respond to a racist or sexist or other offensive joke offered in a polite gathering. Miss Manners recommends silence and puzzlement. As in "I'm waiting for the joke." As in "It's not my job to get you out of this."

It doesn't require outrage, or explanation. It requires not going along to get along and not taking the other person off the hook.

I was reminded recently of how often I am called on to review a manuscript, or pass on information, or answer an interview question where I have to take that stance. You will never see mention of my name in these articles or acknowledgement in the book. You will not hear me quoted or see a link. But my voice DOES have power anyway when I refuse to go along with the joke, or the message, or the opportunity even to promote my own work. Not uncommonly the times I seem silent are the times of my proudest advocacy.

You may see it without knowing when a researcher changes the text on a study because someone like me says it is phrased in a way that is off-base. You may see it in a book that is very different than the manuscript. I'm proud of the way articles have been reframed to avoid sticky issues that I pointed out, even at the cost of not getting my name or organization in the credits. You may even see it in the people who avoid me like the plague for having made them uncomfortable.

Some of advocacy has to do with what we WON'T say, and won't get quoted for. It's still important, and it's worth it. Use your voice, and your silence: it works!

Why attending eating disorder events matters: Hope

There are many, many reasons for attending conferences and events like the ICED in Boston last week. But THIS ONE made me cry.

This mother found hope by meeting fully recovered people. Robustly, happily, perfectly normal recovered people. People choosing meals with ease and enjoying them with others. People popping candies into their mouths without rules. People for whom the severity and chronicity of the disorder is not the determiner of the normality of their lives now.

It saddens me that this is not the inspiration that we see and share. What we are more likely to see, because of the nature of media sensationalism and stigma of mental illness, are examples of "lowest weight" and lists of symptoms and how ravaged people's lives can be.

We don't see the heroism, and hope, of normal. Even a lot of clinicians and experts don't see much in the way of fully recovered people and fully healed families. These examples aren't in treatment and they don't get into the media. These examples aren't necessarily writing books or evangelically charging out to change the world.

The hope of normal should not be fairy-like or rare. The hope of normal should be handed out like, well, chocolates. My wish for all parents and friends and community members is to look at eating disorder recovery as the most spectacularly boring thing -- something those of us in the ED world see over and over and want to share with the world -- normal life.

"That is not what is being said:" Difficult Dialogues in Public

Maybe you had to be there, but what happened at the last session of the Academy for Eating Disorders conference in Boston was a case study in "difficult dialogues." (a topic that I was proud to also explore in a workshop the day before with two past and one current AED president)

Not only was it clear in that final session that the people in the room had very different conceptions of eating disorders, but it has become clear to me since then that those in the room had different perceptions of what happened in the room.

Whatever happened in there was a big deal, but I'm not sure now what it was.

I thought, at the time, that we were all talking about the same things and having a healthy and too long delayed conversation about differences in what we think eating disorders ARE.

Since then I've heard others describe it as a moment when people who misunderstood what was being said spoke up in a strong way.

Still others have said that there wasn't much disagreement, just a lot of emotion.

What I think we'd all agree is that much of what went on in the room had more to do with what was brought in from past interactions than anything ignited in the room. The baggage lugged in, if fully visible, might have taken up more room that the people.

A phrase that was repeated at least four times (it was notable) was "that is not what is being said."

And really, that's the most important thing about the session. Telling people that they don't understand  can be more than one message. It can be "I have not communicated this well enough" or it can be "You lack the capacity to understand me." It can also be that the speaker  has been repeating the same thing so often without understanding its implications that the voices speaking back to it sound more and more shrill but in fact represent a valid alternate point of view.

"That's not what is being said" could be offered as a sincere start to a clarifying conversation or it can be a condescending way of shutting someone down. It can be the beginning of conversation or a way of saying "you don't belong here."

What I can say is that I've heard it before. There are plenty of times when I have misunderstood what I was hearing and needed more background. But, plenty of other occasions where I absolutely DID understand but my response was being misunderstood.

I'm sure during the coming days and weeks I'll hear many perspectives and gain a fuller knowledge of people's perspectives. I'll be listening. I hope others will, too.

Ten Reasons You Are Going To Want to Read the New F.E.A.S.T. Nutrition Booklet

Ten reasons to love the new Nutrition Booklet for parents just published by F.E.A.S.T.: 10. The title is very clever*9. Finally, parents have an authoritative, concise, hand to your doctor or skeptical others, source that explains why "food is medicine"8. Binge eating disorder, bulimia nervosa, anorexia nervosa: all included7. Beautifully designed and produced by Leah Dean6. Stellar team of clinicians are co-authors, headed by Dr. Debra K. Katzmann5. It's green4. It's free3. Boys and girls reflected, as in all F.E.A.S.T. materials2. Fresh off presses and available at the F.E.A.S.T. exhibitor table in Boston this week at the AED conference1. It's designed for parents to use and share
*yes, that was my idea! sue me!

missing my flat whites already!

As I pack for the AED conference (why don't I just get all my clothes in a single color in multiples and simplify? why do I feel the need for so many changes of shoes?) I realize that I will not get my daily Flat White delivered to my desk by hubby in the afternoon.

The coffee is fantastic, but the titles are almost as delicious:

a rubber duck leaving a wake
Darth Vader's head as seen by Dali
quarter moon catching a fly on its tongueHe's a genius!

Boston, AED Conference, here I come!

Looking forward to flying to Boston this week for the Academy for Eating Disorders conference. I could tell you that it is all about the science but I'd be lying. A lot of people I look forward to catching up with especially because I am so out of the loop lately. I used to know who was doing what and how people were. Now that I spend my days doing other work I miss so much.

It's an enormous conference and I never know exactly who will be there until I see them so if you are attending please email me if you want to meet up. I'm doing two panel workshops that I'd love to see you at as well.  Of course I'll be hanging around the F.E.A.S.T. exhibitor table.

I'll be tweeting, too, when I can --

See you there!

Scarlett, I get you.

So, you are a parent out there who has finally reached the top of the infamous "sand hill" and your loved one is really getting better after a difficult illness. It's been hard, you are immensely grateful for the support and information you've had along the way. As relieved and proud as you are of your family and the kindness of your allies, you're also pretty pissed off. WHY did this have to happen and even more important WHY were you given so much crappy information and bad leads at first? WHY hasn't the healthcare system and clinical world caught up with available science? WHY are charlatans able to sell and publish such bad stuff, still?

In other words: you've woken up from crisis mode and you realize that families all over the world are stumbling around in the dark not knowing that there is better information and better ways of doing things and they don't know.

So you want to get involved, you want to be part of improving things for other families. You want to give back, pay it forward, and turn your bad experience into something positive for others.

I love you! Just for being THAT kind of person. Not everyone does, you know. Most families are so exhausted, embittered, self-doubting, and isolated by the time they get their loved one on dry ground that they want nothing but to put the topic in the trash can and back away. Most parents think there's nothing to be done, or that others are doing it. Not all parents find it therapeutic to try to fix what was broken when they came along.

For me, I'm like Scarlett O'Hara getting through the hardest moments of her life by resolving "God as my witness I will never be hungry again. "

I'm gonna be honest, getting out there to make change ain't easy. I have felt humiliated, hurt, offended, condescended to, annoyed, perplexed, despairing, undermined, and misunderstood in nearly equal measure to any sense of accomplishment and success. I have found that it is often my allies who cause me the most sadness, and that simply getting heard is most of the battle.

Again, you didn't ask, but after over a decade here's what I learned:

Do it for you. Do it because it heals you to help others. Resist the very natural impulse to do it as a revenge fantasy against those who wronged you or your loved ones.Draw inspiration and perspective from other advocates outside the area you are seeking to change. None of what goes on in our little world is new under the sun.Choose one thing that matters to you and work toward that. Focus is good.Ally with others doing other things.Pay your dues and do your homework. Charging in without understanding the history or the players will make you a tool of dynamics that precede you.Get to know people personally. There is no short cut to this.Follow the Golden Rule with full acceptance that others will not.At some point your closest allies will become your biggest critics. It's okay. If your goal is good, stick with it.Move on when it becomes toxic. When emails make you cry, when you refresh your screen constantly to see if others rally to your defense, when you find yourself back-channelling in anything resembling a whiny tone, do something else.Know your real friends. They are the ones who, regardless of distance, know you as a whole person and not just as a campaigner. They are the ones who you're fine with not being completely in lock step on the issues, and whose opinions you care about without being the end of the world. Don't choose your friends by ideology. Don't lose friends over ideology.When your sense of humor goes, so does your humility, your cognitive flexibility, your view of the forest and not the trees. Scarlett didn't end up well. She was never hungry again, but man was she miserable and so was everyone around her. Don't let your focus turn you into a one-note, black and white thinking, bitter person in a corner who bites even those who try to hear you. I know a few Scarletts. They don't help the cause.