February 19, 2017

Episode 8: Sock It To ED!


Episode 8: A special mini-episode about Sock-It Guest: Joan Riederer, from the Erin Riederer Foundation Mentioned: Sockit Erin Riederer F.E.A.S.T. / Eating Disorders Coalition Congressional Briefing Academy for Eating Disorders Kitty Westin Susan Ringwood

Full show notes at: http://www.circummensam.com/new-plates-podcast.html


Check out this episode!

February 12, 2017

Episode 7: Meet Eric van Furth on Eating Disorder treatment in The Netherlands


Meet Eric van Furth, Ph.D., FAED, @evanfurth, Clinical Director of Rivierduinen in The Netherlands and past President of the Academy for Eating Disorders. Full show notes: http://www.circummensam.com/episode-7.html

Check out this episode!

February 6, 2017

Where are you going in 2017?

When I decided to create Circum Mensam to help families and treatment providers work together one of the first things I looked at was the calendar: where and when are the most interesting eating disorder events going to be in 2017?

I created a calendar to organize myself and share with others:

International Eating Disorder Awareness and Education Events

Sessions and panels are important, but much of the value of events is the opportunity to really meet and discuss issues. More gets done in hallways, in terms of relationships, than in meetings. Nothing replaces actually being there.

So far, I'm committed to the upcoming IAEDP meeting in Las Vegas. I'm hoping to attend the AED ICED meeting in Prague, and the NEDA/BEDA event in New York and Renfrew Conference in November are also on my wish list.

Where are you going in 2017?

January 29, 2017

Episode 6: Charlotte's Helix featuring Erica Husain - New Plates Podcast


A conversation between host, Laura Collins Lyster-Mensh, and the Chair of Charlotte's Helix, remembering fellow advocate, Charlotte Bevan, and sharing the story of how a housewife and farmer in the UK got her country added to a cutting edge international


Check out this episode!

January 15, 2017

January 1, 2017

Episode 4: Treat To The Trait -- New Treatment for Adult Eating Disorders - New Plates Podcast


In the 4th episode of New Plates podcast, host Laura Collins Lyster-Mensh interviews the developers and researchers of NEW FED TR, a new approach to treating adult eating disorders.  Details and show notes at: http://www.circummensam.com/new-plates-podcast.html


Check out this episode!

December 18, 2016

Episode 3: What if there were an expert parent at every table? - New Plates Podcast


Meet Belinda Caldwell, a Carer Consultant in Victoria, Australia. Learn about CEED, holiday tips for families facing eating disorders, update on news in the eating disorder world.

Full show notes at: http://www.circummensam.com/new-plates-podcast.html


Check out this episode!

December 14, 2016

Reach out and Recover: new online tool in Australia

It always interests me how we talk about eating and weight concerns across cultures. I am in contact every day with Canadians and Australians and people in the UK and elsewhere and find the way we Americans think of and use the English language to describe them both differ and contrast.

Anyway, I am tickled to share a new website in Australia with you, and even if you are not in Australia and not an adult with weight or eating concerns, you will enjoy exploring the innovative ways this site approaches the questions and the information. The site was created by the Victorian Centre of Excellence in Eating Disorders (CEED).

Called ROAR, which stands for Reach Out And Recover, the site offers not only helpful tools but some really important messages that we ALL need to remind ourselves and say to others:
  • Dieting is risky (and doesn't change your weight)
  • Body dissatisfaction is common, but not trivial
  • Too much exercise can be harmful
And the site has marvelous and moving videos:


George's Story from www.ceed.org.au on Vimeo.


Tara's Story from www.ceed.org.au on Vimeo.

"I got my life back." That's the point.

December 9, 2016

Force-feeding, or life-saving?

It is a week of well earned congratulations and disappointment, and both around the law.

Congratulations are due each and every but especially a few for the passage of The 21st Century Cures and Mental Health Reform Package in the US Congress. Oh, the people, the work, the patience, the skill, the strategic wisdom, and the WORK that went into getting eating disorders included in that bill, and passed. I've been watching and at times involved with the work and anyone who cares about eating disorders owes an enormous debt to those who did not give up, did not lose sight of the goals. Those who suffered any number of setbacks and disappointments and KEPT GOING. And it matters. It really matters. Thank you to the organizations, especially the Eating Disorders Coalition, which itself represents organizations -- like F.E.A.S.T. -- who stood for all of us and got this done. It's a good week for mental health, and we needed it.

Another story which may seem to be about one person is actually important to countless others. A woman in New Jersey suffering from mental illness expressed the desire to stop being saved. It isn't uncommon to hear this, and countless families and treatment teams have been faced with the question of whether continuing to distress the patient is compassionate or irresponsible. So the decision by a judge to agree with the petition not to be "force-fed" is hitting many in the eating disorder world hard. Because we all know how agonizing treatment can be. And we all want to offer solace. And sometimes mental illness can seem so intractable and the medical effects so dire.

But many of us see this decision as a grave misunderstanding of what anorexia nervosa is, what treatment is, and what our role as loved ones as treatment providers can be. I wrote about this in a Huffington Post piece this week, and talk about it in the latest episode of New Plates. If you, too, care about this, make sure to be a voice saying so.


http://www.huffingtonpost.com/entry/there-is-no-such-thing-as-late-terminal-anorexia-nervosa_us_5849c4e9e4b07d4bc0fa2605

I hear many people say "no one cares about eating disorders." Well the success in the US Congress is a triumph for our voices being heard. The case in New Jersey is one where we can choose to speak or be part of the silent assent.

Listen now:

December 4, 2016

Episode 2: History of Including Parents in Treatment - New Plates Podcast


Why have parents been kept out of treatment, and how has it changed? Host Laura Collins Lyster-Mensh as she asks experts from around the world why including parents during eating disorder treatment was once controversial. Also: eating disorder news, and Laura’s favorite word of the week, “anosognosia.”
Details and show notes at: http://www.circummensam.com/new-plates-podcast.html

Check out this episode!

November 21, 2016

Have you heard the NEW PLATES podcast episode 1 yet? "Why Include Parents During Eating Disorders Treatment?"



"Why include parents during eating disorder treatment?"

Some might say "why not?" I took the opportunity recently to ask leaders in the field, parents, and advocates this question and you can hear those answers on episode 1 of the NEW PLATES podcast, now available on the Circum Mensam website as well as on most podcast apps.

Quoted in episode 1, in order of appearance:
  • Dr. Mark Warren, Chief Medical Officer at the Emily Program (phone interview)
  • Dr. Lauren Muhlheim, Psychologist and Director of Eating Disorder Therapy LA
  • Professor Janet Treasure, Kings College London, South London and Maudsley Hospital
  • Dr. Craig Johnson, Chief Science Officer at the Eating Recovery Center
  • Dr. Julie K O'Toole, Chief Medical Officer, Kartini Clinic (phone interview)
  • Dr. Lucene Wisniewski, PhD, FAED  is Chief Clinical Integrity Officer of The Emily Program
  • Dr. James Lock, Director, Stanford Child and Adolescent Eating Disorder Program
  • Dr. Sarah K. Ravin, Licensed Psychologist (phone interview)
  • Jenni Schaefer, the Well-known author and motivational speaker
  • Lisa Conn (phone interview)
  • Katie, parent of daughter diagnosed at ten and now 16, in solid recovery (phone interview)
  • Belinda Caldwell, Executive Director of FEAST and Carer Consultant Victorian Centre of Excellence in Eating Disorders (phone interview)
Mentioned:
Eating Disorders Recovery Podcast with Tabitha Farrar tabithafarrar.com
Eating Disorder Research Society
National Eating Disorders Association
Dr. Walter Kaye, UCSD

Circum Mensam is a consulting firm that assists professionals and clinics in working with families successfully and toward better outcomes for eating disorder patients. If your program, event, literature, or training could benefit from expertise on parent involvement, contact us today.

LISTEN NOW, FREE online: CLICK HERE.

You are welcome to contact me, Laura Collins Lyster-Mensh, MS at LM@circummensam.com, the host of NEW PLATES.

Add YOUR voice to the podcast by leaving voice messages at the site as well!

November 14, 2016

Back, but with a new hat...

I took a break from eating disorder advocacy, but you know what? I don't know how to quit you. With our last child graduating and starting college it was time to reassess and figure out what I wanted to do now that I'm free to work full-time. I finished some projects and tried a few new things, and discovered:

It turns out I've still got some work to do and, I hope, something to contribute. So I told a few friends, and they told some friends, and I now have a new company, Circum Mensam. That's Latin for "around the table" which is a bit of a theme with me. I believe getting families and clinicians working together is a powerful tool for both eating disorder recovery but also relapse prevention.

I have informally, and on a volunteer basis, been doing consulting for some time now. I have, to tell the truth, so many requests for information and to collaborate on projects that it has felt like a full-time job for a long time. I truly enjoy working with both professionals and parents to improve treatment for families. And, in the past few years, the interest in ways to involve parents in treatment for better results has grown faster than the supply. The voices of parents are being heard and it shows in the changing policies, media, and training.

But still, in 2016, most patients with eating disorders are getting treatment that is not inclusive or friendly to their families -- if they are getting treatment at all. And, those who want to better involve families too often find institutional, cultural, and training barriers. Even providers who offer Family-Based Treatment, the gold standard of family inclusive care, often find their work undermined by untrained or FBT-skeptical colleagues.

Involving families isn't only about FBT, or family therapy, and Family Week. Involving families means looking at everything from first phone contact to billing and communication between teams. Involving families means skill with family work but also a view of a family's needs and strengths in the bigger picture.

I'm ready to get back to work. I already have started and it's time now to publicly announce it, and ask my friends and allies in the eating disorder world to:

Subscribe to the new podcast, called New Plates, starting in November. It will be about family-centered treatment and ways for families and clinicians to work together to help patients get well. It will include the voices of families and clinicians and researchers and advocates. In fact, I hope you'll consider being a guest on the show!
If your practice or clinic treats eating disorders, schedule a phone call with me to discuss your program and how you engage and work with families. If you are a parent or family member with experiences to share: call me!

Pass my name on to any clinics or organizations who might be looking to add or improve their family work, or are troubleshooting issues involving training or website content.

And parents, allow me to help other families by learning from you. What's working and what's not? What would help your family better support your loved one? What policies or roadblocks do you wish were changed?

For more information on Circum Mensam, and my new work, visit the website at www.circummensam.com

To catch me up on what is happening with YOU, dear friends, change my email to LM@circummensam.com and update me!

January 10, 2016

Why you shouldn't listen to me about sex, but probably will anyway


If you needed a reason to wonder what on earth I am doing hosting a podcast about sex, this infographic should be a clue. 
  • I misspelled "benis."
  • The girl is shooting sperm back at the dude.
  • The sperm are the size of hamburgers.
  • It's sexist: why is "Boy" capitalized and not "girl?
  • You couldn't even catch the flu from this distance.
  • The girl has six limbs. Or two tails. 
I was probably seven years old at the time, but still. Some people have midlife crises: others start podcasts. Against all odds and good sense the first episode of Our Better Half is now available.


You can subscribe on iTunes
You can listen on the SoundCloud site
You can use the Stitcher app


December 22, 2015

Mistletoe, mischief, and coming OUT

This hasn't been a secret nor have I tried to keep quiet on it but for some reason saying it here on my blog makes it real: I'm working on an "easily amused" podcast series about SEX.

SEX after 50, which seems to shock people far more than just SEX. Why is it that the topic of sex over 50 makes people giggle and then confess?

Are we more shy about sex than younger people or are we more shy about seeming older?

Well, I'm over it. I feel like I closed my Our Bodies Our Selves in 1977 and then forgot to update myself since then. As an old married broad with children I've spent way more years making my kids roll their eyes than my parents.

But no, I'm not planning to start oversharing my own (quite happy*) sex life, except in passing. I'm interested in learning what I missed while I've been busy travelling the world and having kids and, as of this week, launching those kids into legal adulthood. There are vocabulary words I don't recognize, places on the Internet I didn't know about, even technologies that expand our sense of what sexuality is. There's a growing problem with sexually transmitted illnesses (they even changed the name!) among older folk, and ageism in healthcare is a problem. Many boomers are caring for even older parents and dealing with issues like sexual rights in nursing home care!

I have always considered myself positive, if prudish, about sex. I expected to remain a sexual being until I was dead. No one told me I was supposed to stop in the second half of life, so it came as a shock and annoyance when the giggles turned to snickering. Nope: not having it. There are sexual health and happiness issues attendant to getting older but the right to the pursuit of sexual happiness is not reserved for the young: what a waste!

So, tally ho. (sorry. everything sounds like a double entendre now...) Go see the site, go subscribe to the podcast which will be available on iTunes and Stitcher and all the usual podcast sites, as well as available to listen online or download from SoundCloud. Learn with me; laugh with me!

OUR BETTER HALF, the podcast: first episode early January 2016!

** Deliriously, gloriously, delightfully happy, for the record, and to make sure my husband reads my blog.

December 3, 2015

vote now for YOUR favorite film featuring lovers who are over 50 years old

Yes, Dorothy, there are films featuring lovers over 50. Not having 50 lovers, though that MAY be true.

Rankings will be announced in January on Our Better Half podcast.

Vote or add your own!

November 19, 2015

Transcript for AED F.E.A.S.T. Twitterchat last night now available!

If you missed it, and regrettably I did, you can read the transcript for last night's Twitterchat with the Academy For Eating Disorders on the topic of

The Road to Recovery: Caregivers as Partners in Treatment #AEDchat

with guests from F.E.A.S.T.

What a fantastic chat: inspiring and including some of the most important things parents and clinicians need to know when it comes to caregivers!

November 11, 2015

Getting naked for a good cause

No, I'm not stripping down! But I see a lot of it going on: supposedly empowering commercials featuring non-standard sizes of women in their underwear, for example. Activists stripping down in public and trusting strangers to hug or write on them. Daring to go bare.

I get the symbolism: stripping down to one's common, um, denominator is being metaphorically naked and real to the public.

But, really? Why is the standard for body confidence half-naked? Why is it appearance-based at all? Why, indeed, is it about others? For many, just standing in one's skin of a normal day is an act of boldness, alone in their room., fully dressed. It doesn't need to be in public, or shivering in the gaze of strangers.

This brings to mind an era when we were told we were "uptight" if we didn't want to embrace "free love."

I don't know that stripping down to one's skin is necessarily casting off one's self-consciousness. For some it is, and that is be applauded, but it shouldn't be the new standard of being real. I'm real in my clothes. I can be confident in my underwear without displaying my underthings. Confidence in one's body image need not be proved through how many layers we are ready to strip off. In fact, body confidence isn't about how we LOOK, anyway. It is not necessarily lack of self-confidence that keeps our drawers on, it is also social propriety and comfort and privacy.




November 10, 2015

Fragility as power: I need a fainting couch!

I am noticing all around me -- in politics and social issues and local groups and advocacy and support circles -- the power of fragility to become something very much like aggression.

Who knew fragility was so powerful!

Anywhere good people are trying to do good things the power of fragility is not just in getting personal sympathy: it's a darn good way to stop uncomfortable conversation. Polite, decent people do not force people to talk when they don't want to. Nice people don't respond to tears without sympathy. While we all stop to fan someone with the vapors progress is put on hold.

But fragility is not always from weakness. It can be wielded as a form of power as well.

The power of being offended, feeling unsafe, and having one's motives questioned only works when the other people are caring, decent people. And who, I ask you, are the ones out there trying to do good but the decent and the caring?

It is an uneven playing field when some in the mix use fragility as a weapon. Aggression is easier to spot. Meanness is easy to spot. But the power to withdraw isn't always an act of conscience. Again, like the Dreaded Drama Triangle mentioned recently, fragility can seem like merit and deservedness when it is really more a way to stop criticism and control the field of discussion.

Mutual respect means treating others not with delicacy but with an assumption of necessary confidence. Those feeling fragile need support and a seat to the side to rest: honored and cared for but not in charge of the conversation. If we are discussing tough topics we need to be in a strong space.

In other words, fragility can't be an excuse to stop the conversation toward progress. It does get exhausting and feels awful at times to be an advocate but, like aging, is not for sissies OR bullies.

November 9, 2015

Doing it right doesn't mean it will work

There's a particular brand of magical thinking out there among parents. We think that if we do it RIGHT then the results will be what we desire. As if we deserve the best when we try the hardest and, by corollary, if we do not get the best outcome we did not do it "right." This is at best laughable but also tragically cruel if you think about it. Just because you did it right doesn't mean the outcome is going to be glorious. That's as illogical as thinking that wearing a seat belt prevents accidents.

For parents facing really difficult caregiving I get it: we CARE A LOT about doing the right thing and we should. We need every ounce of hope and energy and the decisions we make do matter. But those decisions are not magic.

It saddens me to see parents for whom things have not been successful feeling as if they have failed. It's even worse to see parents feel criticized by other parents. Sure, parents do fail, but the outcome for our kids isn't the measure of our efforts or decisions. In the case of mental illness things do not always come out well. In fact this is why it is urgent that we get more research and do a better job applying what we do know -- because the bad outcomes are horrendous and we have to do what we CAN to increase the chance of success.We stumble along as best we can, all of us, making mistakes and doing our best -- all of us.

But when the illness or circumstances keep our loved ones from wellness too often all that hope and magical thinking can sound like criticism. This should not be. The outcome does not tell us anything about the family or the treatment providers or the health system and NOTHING about the patient's "wanting." We can all do everything perfectly: the patient and the family and the professionals and society AND IT CAN STILL GO WRONG. We can also make mistakes (we all do!) and still come out all right.

Let's not add to the pain and grief of families with judgement and second-guessing. Let's encourage fellow parents to do what they CAN and stop when they must. Let's accept no one does this perfectly anyway. Our job as a community of people who get it is to be supportive of one another and empower one another. That means honoring the choices of others. It means offering our own stories and the information that helped us but not requiring others to come to the same magic formula. Let's not judge effort by outcome, or do anything but hold up our fellow families. And, let's not fool ourselves into thinking that our successes make us better people or more than one anecdotal story.

Families whose loved ones remain ill or have permanently disengaged or have died need the support of the community as much as those just entering it. Their wisdom and experience are necessary and valuable, and their grief is not to be turned away from or made unwelcome. The reason that happens is fear, I believe, fear by association and fear of rejection. We, as a community, are stronger than that!

November 6, 2015

are you in the drama triangle?


The other day I had a EUREKA moment when I connected what I see in support environments with what happens in advocacy environments -- and in our little eating disorder parent advocacy world the two are often the same -- with the models represented in this diagram.

You can read about Karman's Drama Triangle and The Empowerment Dynamic here, and I hope you do. What I want to say to my fellow advocates is that progress in the field is best done outside the Drama Triangle, which is really an emotional trap. It's ego and being right and wanting to be a rescuer but it invariably ends up making us into persecutors or being seen as persecutors, and I think it creates more and more victims and it doesn't WORK.

The point of advocacy is progress for the field.

The Empowerment Dynamic represents the best of advocacy AND creating supportive peer environments for caregivers. It embodies the way, ideally, parents can make it about outcomes and to KEEP OUR PASSION. I see too many advocates and mentors burn out or become embittered, and only a few stay in the "Passion-Based Outcome-Focused" range. I see too many of us succumb to personal attacks or feeling unappreciated or disliked. These dynamics only serve to keep us divided and off track.

In fact, I think the Drama Triangle may have been invented by ED! And that makes sense, too, *duh* ,because it is anxiety-based. I'm seeing that the future of parent advocacy and of shared ED advocacy is in the top triangle, where the best parenting and the best peer support is to be found!

Thoughts?

October 15, 2015

Just because: Leonardo Sandoval, tap musician

Saw this young man perform in Richmond over the weekend and then attended his workshop: Leonardo Sandoval. So musical, so charming: he soars.

I have a new favorite tapper.

 

Two of my friends told me of grave medical problems today. I needed this.

F.E.A.S.T. event in DC coming up!

Have you registered yet?

Join other F.E.A.S.T. families at an event in Washington DC on October 27, right before the MOM March at the Capitol:

Caregiver Lunch & Learn Event
Speaker: Mark Warren






September 23, 2015

Why monitoring a child's weight and height DO matter

I applaud this article!

How Monitoring Your Child's Pediatric Growth Could Help Prevent An Eating Disorder by Dr. Lauren Muhlheim.

This is thorny: parents need to know that they can't tell by looking at someone whether they have an eating disorder. But you DO need to know your child's normal growth pattern.

It isn't that weight is the only symptom, but parents you do need to know your child's growth trajectory. You can not tell by looking if your child is failing to gain height or weight due to subtle restriction. That restriction could be from a number of reasons, as the article states, but it is not normal and may be an early sign of mental illness.

The best time to intervene is as soon as possible. For those predisposed to these deadly mental illnesses you may be able to intervene early enough to stop it in its tracks.

Believe me, you do not want to wait until you can see it. And this is not just anorexia nervosa, this is all eating disorders: restriction is the beginning of bulimic and binge eating patterns as well.

Monitoring growth isn't everything, but it is REALLY important!

September 18, 2015

Caring for an adult in the US with mental illness? Please participate in this NAMI survey!

It is hard to care for a child with mental illness. But for those supporting an adult child suffering from mental illness the task is exponentially more difficult: there are administrative and privacy and legal hassles, there is the wear and tear of chronicity, and the world is likely to be telling you to "let go."

Parents with adult patients in their care are stuck in a limbo of parenting without the rights of a parent, locked in perennial negotiation with an illness that is not likely to respond logically or in the person's best interests.

As a longtime mental health advocate I have seen the larger mental health world pretty much ignore eating disorders, and ED advocacy has until recently opted out of the larger mental health advocacy picture.

So, it is with enthusiasm and hope that I share this survey out of NAMI, a leading US mental health advocacy organization, looking for responses from US caregivers of adults.

If we want change, and we want to be considered in the mental health arena, we as families need to step up whereever we can to be counted and to be heard. This survey is one of those opportunities, and passed on to me by another wonderful parent advocate, Joan Riederer of the Erin Riederer Foundation.

September 16, 2015

new video describing the family experience of anorexia nervosa

There's a new video out there for parents facing an anorexia nervosa diagnosis:


I love seeing content being created by parents for parents. These parents have done a wonderful job describing their experience and what they have learned. It is a compassionate, respectful, and meaningful view of their daughters as well.

There is much here to learn from these parents that applies to ALL eating disorders, and of course to male patients as well. Although they are not addressing adult patients in the film I also see this as in principle a grounding view of all eating disorders.

Congratulations to Parents to Parents!

July 21, 2015

Women's Plaza of Honor



The other day a young woman I know deflected a compliment. A seasoned old woman, I admonished her, saying that not taking compliments is bad for self-esteem and leads to being dismissed in society.  Also, it insults the giver.

She expressed her instictive horror at appearing to brag or be conceited. She also didn't want to be seen as ungrateful. As we discussed this we realized that while we both feel uncomfortable with appearing braggy or full of ourselves we also recently had experiences with being passed over or not taken seriously -- or even SEEN -- because we waited for others to acknowledge our contribution.

Worse still, our ungracious deflecting was surely an insult to the giver and invalidates their opinion.

So then today I laughed because I was cleaning up files and updating my resume and came upon an honor, a compliment, really, that I myself didn't want to brag on and thereby have failed to fully acknowledge the gift of receiving it.

I felt funny about "bragging" so I accepted this honor privately and although I squealed with delight with my mom (it's not bragging when it's your mom), I took the modesty route and didn't make a big deal over it. But it is a big deal when someone acknowledges you and your work and while I fall over myself to do that for others I have never found a way to feel gracious doing it myself.

After all, we don't do this work for the fame or the money or to be loved. We do it because we are inspired to and want to help others, just as those who came before us and inspired and encouraged us.

I am HONORED and GRATEFUL and very pleased to have been nominated and accepted for a brick in the Women's Plaza of Honor at The University of Arizona by my friend and fellow advocate, Jennifer Aviles. Thank you for noticing and showing your appreciation for my advocacy. I can't tell you how thrilled and validated and happy it makes me. I am proud to be among other women so honored. 

Taking a bow, and blushing, and encouraging us all to take compliments with at least as much pride as modesty.




July 18, 2015

Read it? Review it today!

If you're a reader, then you need writers, and writers need YOU. We only need two things in life: to be read, and to be reviewed.

Post a review for a book you've recently read. It matters!

I'd love it to be one of mine, of course, but reviews only take a moment of your time, don't need to be works of literature themselves, and they keep the readers in charge of what happens to books.

on Amazon
on Goodreads
on LibraryThing

ps if you would like a review copy of any of my books, let me know!


July 16, 2015

F.E.A.S.T. Executive Director describes advocacy goals and approaches

Fantastic, must read blog post from Leah Dean at F.E.A.S.T. today. She says what many of us think and believe, expressed beautifully!

Same Brain: Different Operating System

On a personal note, I've been disturbed, myself, to see conflict inside the ED world of a kind I never thought I'd see. People with many of the same beliefs I have about evidence and science and parent involvement are forming their own groups and factions and running into many of the same obstacles and road blocks I know well. These informal groups are not always operating with the accountability and civility that I feel is so important. They are not always taking the time to understand the history or to know who has done or is doing what. Some individuals are making demands without having earned trust, confusing informal lists of people with accountable organizations, personalizing their critiques and making the issues into conflicts between people and not ideas, calling out organizations and individuals in the field instead of recognizing them as allies.

Also worrying is the resurgence of parent-led advocacy that repeats history by promoting ideas about parents and eating disorders that are not evidence-based and not parent empowering. Factions and fights and splitting are abundant. And people are confused.

I'm seeing people be exiled and shunned and pathologized. This is not the way I operate or recommend that others do either.

I know the temptation of throwing bombs. I've thrown some myself. They always land in my lap because I didn't recognize that change in the ED family comes through persuasion and trust, not being "right." I had a lot of "shoulds" in my head: people SHOULD understand, SHOULD behave differently, SHOULD have courage, SHOULD operate logically, and SHOULD trust me. Didn't work.

We are a family whether we like it or not. If you make an enemy in this world its a small room, and there's no room in here to stalk off and sulk. If we as an individual don't gain the trust of others we don't get very far and we often hurt our allies and the ideas we hold dear. You may be right, and you may not be the person you're accused of being but if the perception is there you aren't going to be effective until it is repaired. If you are associated with someone who has, rightly or wrongly, gotten a bad reputation or scared people, you carry that burden and have to fix that first. It "shouldn't" be that way, of course. People should do the "right" thing and they should believe the science as we know it. But, we're not there. And we're not going to get there as individuals or even as single groups.

The way forward, I find, is in accountable advocacy. F.E.A.S.T. started with just a handful of people, as Leah Dean describes so well, who built the scaffolding and accountability for the principles and beliefs we hold dear. It built a structure for present and future parent advocates and those who care about parents and science to do effective advocacy, to have a collective voice. An accountable voice. As individual members of F.E.A.S.T. each of us has a single voice but by supporting the organization's work we speak as a group.

You can be part of that voice, or you can distract from that voice.

Accountable advocacy is a team sport. It isn't as immediately satisfying as an angry tweet, or intimidating someone who disagrees with you. It isn't as visible, often: building relationships and real conversations are not showy. And it doesn't always feed your ego and make you well "liked" on Facebook.

Much of the very personalized infighting I see going on at the moment is about individuals, not ideas. I support F.E.A.S.T. because it keeps all our egos in check and is about more than any one of us or any informal group of us. But it also depends on the families it supports to support it through joining, volunteering, donating, and sharing it with others.

I don't want to hurt those in the field with whom I disagree. I want to persuade them, and learn alongside them, and succeed together in our common goal: better ED treatment. That doesn't mean not having or stating or pressing my points. It means doing so in a way that acknowledges our common goals and humanity. It means listening as much as talking. It means establishing trust, which can't be forced or demanded. Too small a room, and too fractured and embattled from the outside. We're a family and have to pull together and resolve our disagreements if we want to have a clear voice to the public and to policy makers and the media. We have disagreement and that's okay. Resolving them is what we need to do, not "win" or prove others wrong.

We're getting closer. Let's "keep going."

July 11, 2015

60 seconds of lovely

Cute cat videos are good, but I get my blissful moments this week by way of moments like this:
video

In the rare moments of sundown in Norwegian summer, gorgeous colors and peace.