April 30, 2015

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!

April 29, 2015

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.

April 27, 2015

"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.

April 21, 2015

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 included
7. Beautifully designed and produced by Leah Dean
6. Stellar team of clinicians are co-authors, headed by Dr. Debra K. Katzmann
5. It's green
4. It's free
3. Boys and girls reflected, as in all F.E.A.S.T. materials
1. It's designed for parents to use and share

*yes, that was my idea! sue me!

April 20, 2015

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 tongue
He's a genius!

April 19, 2015

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!

April 17, 2015

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.

April 15, 2015

The Auldton Laughing Club

What's this, Laura? Not one book published today but TWO? 

This one, for fiction fans, brings me back to my writing roots as a small town columnist.
cover for The Auldton Laughing Club

The Auldton Laughing Club

"The peculiar story of an odd small place:Where secrets are kept in plain sight."

The good, and not so good, citizens of Auldton, Virginia, protest a mega-store by putting on an historical re-enactment that will expose more than the past. Posers, criminals, and the allergy-prone do battle with segregationists, Civil War buffs, and the tyranny of Robert's Rules.

The Specific Scent of Snakes

book cover for The Specific Scent of Snakes
Well, my friends, it's a big day. My book, The Specific Scent of Snakes, is in print and available for sale. The story of getting it published is another story altogether, for another day.

If you like my other writing, about mental health, then I hope you'll consider reading this even though it has nothing to do with eating disorders at ALL. This is a love story, romantic and parental.
"A haunting, heartbreaking, heart-healing memoir."Susan McCorkindale Pearmundauthor of Confessions of a Counterfeit Farm Girl 
A mother learns the true promise of living a natural life when she moves her family into the woods and gets pregnant, tripping over goats and myths and inevitable losses. A story of fertility, humility, and the truly messy business of an organic life. 
Award-winning author and essayist, Laura Lyster-Mensh, explores the moments when the most natural course of things is the last thing she expects.
I need some champagne. Except.... there are actually TWO books published today. So I need two bottles!

April 13, 2015

Trolls, attacks, and swarming

I have my share of antagonistic commenters on this blog. Some are condescending and others downright nasty. I don't have to publish them but I do, with rare exception, on the principle that sunlight is the best disinfectant. We really can't afford to not hear one another in such a divided field.

The price of being able to say what I want to the public is hearing FROM the public.

I know many people who publish or post or comment and are shocked by the responses they get. This leads to statements about being "attacked" if it one or a few people and "bullied" if it is more.

You didn't ask, but here's my advice.
  • Listen. You may be hearing from someone with a tired flag they wave at everyone and be entirely alone in their view, but they may also be alerting you to critiques that would otherwise not be known to you. Not knowing that people disagree with you doesn't mean they don't.
  • Count. One person with an opinion is just that. 
  • Intentions don't count. You may not "mean to" say something or hurt someone and you may be a really nice person who has suffered, but public statements do not have context: they stand alone.
  • Be confident. People can disagree with you. It's okay. If you want to speak up in public you can't expect to please everyone or be understood. If its important say it with courage regardless of the response.
  • It isn't about you. If the opinion or position you are taking is just yours and represents no larger movement or current in thinking then maybe it is about you, but we don't say things in public just to hear our own voice. We are trying to be heard so we can persuade, or comfort others of the same view, stand up for a principle. So if it's not about you, then neither is the critique.
  • It isn't about that critic. If what someone says has truth to it then it isn't just her opinion and you need to know what that thinking is.
  • What-ev-er. If you want to speak in public you have to have a sense of humor and a rude hand gesture to call on in the privacy of your home. If you make too much of any response or take it too much to heart you may not have the stomach for public discourse.
  • Anonymity and/or not being in the same room do strange things to people's manners. That's between them and their grandmother, and only reflects on you if you throw it back.
  • A group of people with a shared opinion on one thing are unlikely to be allies on much else. When a bunch of people swarm over and pile on about your saying X, they are most likely griping about someone else in the swarm at the same time. The enemy of your enemy is rarely your friend. Your cheese stands alone.
  • Apologize. If you say enough things over a long enough time you will say something you later regret. Own it. Growth is good. You want others to hear you and you want to persuade them so give them room to grow as well. We're trying to change things, not just be right.
  • There's a difference between growing public opinion and swarming. If you personally stand up for what you believe, and others join you, that's public protest. If you exhort others to swarm against something just on the basis of your relationship that's swarming. In the end we are all individuals of conscience and responsible only for our one voice. Use it carefully.
  • Speak up against ideas, not people. If it is just about that person then it's not something to do in public. If it is an idea then then debate THAT. There is no "them" and "us" it is "this idea" or "that idea."

April 9, 2015

My child hates her body. What did I do wrong?

I was raised in a family and a community that was all about diversity and self-esteem and empowerment. In that era it was about women throwing off the shackles of sexist oppression of our bodies and roles, and racist ideas about intellect, and conformist views of personal destiny. College towns in the 1970s were a beautiful thing. Lots of naked swimming and tie-dyed dancing and pot luck dinners.

So, as a parent when I met teenage body angst: "my hair!" "my thighs!" I was prepared. I had always been about love your body for what it does, not how it looks -- about self-care, and valuing people by relationship and accomplishment by effort and kumbaya kumbaya.

It took a while to figure out that some teen body angst is not coming from outside, and not even coming from one's genuine inside: it can be signs of brain disorder.

You know how when you look at an Escher painting and your vision just shifts so you see something you couldn't before and now you can't see it the other way? It's like that.

So, while I surrounded my children with books and media that featured all kinds of bodies and gender roles and ethnicities, and I highly endorse those values and goals, it really troubles me when books and campaigns about raising children's body esteem are offered as an antidote to eating disorders and mental illness. It is frightening to me that people IN the field, who know how dangerous eating disorders are and I feel should know better, think that the pathological body image distress and body dysmorphia and unquenchable drive for "thinness" can possibly be mistaken for a dearth of positive messages.

Are you kidding me?

It isn't just that these are like paper swords in a rainstorm it's really harmful and insulting to parents who have kids with mental illness right now. These "prevention" efforts are not only useless they not at all subtly say to families that we failed to nurture our children with enough positivity or we failed to arm our loved ones against these messages.

Again, are you kidding me? Have you MET these patients? Do you really think that their harrowing devolution into mental illness is a self-image problem?

That says more about how disordered our society is -- and it is -- than anything else. We're way too close to genuine madness to tell the difference.

If your son or daughter starts talking about hating their body or being "too fat" or skipping meals they MAY be copying their environment. They MAY be rebelling against their environment. But they also may have the early symptoms of a life threatening eating disorder that has nothing to do with anything you or anyone said or did or failed to do. At that moment you don't need a self-esteem book. You need psychiatric intervention, and fast. If anyone throws you a book on body image, trade it for one on evidence-based treatment.

April 7, 2015

Speak now or forever hold your... stomach in at the office

Seriously, though, posted by request and very happily:
We are asking for letters describing negative experiences and outcomes related to corporate wellness programs and people with EDs of any type or stories from treatment providers describing the impact these programs have had on their practice.
Stories of:
  • Discrimination, 
  • Triggering 
  • Failure to inform or provide "Reasonable Alternative Standard” policies
  • Relapse
  • Any other harms

These stories will be aggregated and submitted to the Administration and/or the EEOC to help inform and strengthen the employee protections that are currently in jeopardy due to Senate bill 620, the Preserving Employee Wellness Programs Act.  This bill proposes changes to existing employee protections that would allow employers to ask invasive medical history questions including those about mental health and genetics.  Also, it would allow businesses to penalize employees who choose not to participate in the programs with fines up to $4,000.

We need your help in flooding the EEOC and humanizing the reasons why invasive questioning, wellness programs based on weight metrics, Biggest Loser style competitions and punitive fines are a direct discrimination to the 15 million Americans with EDs – many of which are part of America’s workforce.

Please send your stories, or stories of how your practice has been impacted by these outcomes to Kathleen MacDonald at km@eatingdisorderscoalition.org or directly to Lizabeth Wesely-Casella at admin@bingebehaivior.com.

Thank you for your prompt attention and support in this activism.  Your stories matter!

-The EDC (Eating Disorders Coalition)

 a side note: I don't think these programs are just a risk to those predisposed to eating disorders but to ALL of us. These "wellness" programs are well-intentioned but ungrounded. The goal is health but the result is size discrimination, body shaming, health shaming, and of unknown value to health. Fining people for their health status and bullying them into behaviors isn't promoting health. It will lead to people doing unhealthy things and lead to people losing or leaving jobs.

Those of us familiar with eating disorders know the risks of these pressured and unprofessional situations but there is a harm to society when employers become health police and co-workers become spies and competitors in issues not relating to work.

We can create healthier workplaces without punitive, discriminatory, ill-considered initiatives like this.

Do We Know Enough About Eating Disorders To Prevent Them?

Dr. Michael Levine, a thoughtful and well-known proponent of ED prevention efforts, asks a good question: Does Eating Disorder Prevention Work?

His recent series of posts is fascinating and rich, but has many layers that I find myself arguing about in my head so instead I will present them here.

Dr. Levine refers to two critiques he has heard of prevention work:

Nevertheless, there continue to be a number of influential researchers, clinicians, and activists who are skeptical about the possibility of effective prevention. These stakeholders in the field are concerned that prevention programming and research will siphon precious financial and other resources from basic efforts to understand and treat eating disorders. In addition, over the years several parents have challenged me by insisting that well-intentioned but misguided information aimed at prevention actually triggered their child’s ED.

I actually don't share either concern. I don't worry that prevention will take away from other ED work, for example, as in my experience these are different researchers, clinicians, and resources. I also do not share the worry about triggering EDs -- I know it seems that way to many parents but I think we make a lot of the moment WE realize our loved one has an eating disorder and what our loved one says is the reason. If all it took was one event to trigger mind-altering mental illness then that house of cards was waiting for any gust of wind.

My critique of prevention work is different. I don't think we know enough about EDs to prevent them. I don't think we know what causes them and more to the point I don't think we've parsed out the difference between symptom and cause enough to form the question.

The prevention work out there focuses on identified and modifiable risk factors, and there is some evidence that some risk factors can be successfully changed, if briefly.

But do we agree that modifying these "risk factors" prevents mental illness?

Preventing disordered eating and body image distress does not necessarily prevent the mental illness we call eating disorders. We really don't know, and we would only assume that if we agreed DE and BI distress cause eating disorders, which we don't. Those symptoms in the mentally ill may or may not have any relationship to the person's values, true desires, or environment. Like the symptoms of other mental illnesses, they don't necessarily need a reason or a cause. Like the symptoms of other mental illnesses, their severity may have nothing to do with outside influence at all.

Disordered eating and body image distress may be one thing for those with an ED predisposition and another for those without. It may be that for those without an ED predisposition you can change the course of those thoughts and behaviors, but that you are not preventing an eventual eating disorder. There's lack of clarity over whether "prevention" can serve as early intervention, or whether the illness is being delayed, or we're dealing with very different problems entirely. None of the prevention work shows that eating disorders are being prevented: only that disordered eating and body image concerns can be reduced in at risk populations. Without knowing which of those subjects would have gotten EDs without the intervention, which would take enormous sample sizes and many years of follow up, we don't know. No one could argue it is not good to make these changes for society, but if the target is mental illness it matters what we are measuring.

Levine demonstrates the ways we use the word "prevention." There is a vast difference between: "keep it from occurring" and "delay its development or minimize its severity. There's the rub. Keeping it from occurring is how most of us would use the word prevent. The latter two, delaying and minimizing, are what I would call "early intervention." And it matters. A lot. Prevention involves removing a cause. Intervention is about fixing a problem that already exists. If talk of prevention leads the public to confuse cause and symptom we risk:
  • Failing to improve society in ways that are important
  • Failing mentally ill people and their families by chasing false trails and blaming them 
I don't know if current prevention approaches are diagnostic or therapeutic. I suspect they are diagnostic: people who respond to the intervention are different than those who do not. I absolutely know, however, that prevention literature has an enormous effect on advocacy and treatment.

The weird thing is that I am a huge proponent of every single thing that is happening out there in the prevention world EXCEPT that it is being promoted as ED prevention. 

I want ALL children to have a world free of body shame and objectification. I want the full diversity of humanity to be celebrated and although this will also be a much better environment for families and clinicians to help eating disorder patients recover we have to intervene regardless of how stupid society is about body shape and weight. We do not have to and indeed CAN NOT wait.

If all the things we call "prevention" are good things in their own right -- and they are -- then we should be doing them. For all of us and for all kids. If we were doing all these things in the name of good parenting and a healthy society but did NOT sell them as eating disorder prevention then we all win, folks.

There is so much we could do for early intervention for those who are predisposed to mental illness and we are not. Hobbling them and their families with unfounded ideas about causation at the moment their loved ones need them so much, this is neither necessary nor helpful.

So we do need to talk about prevention, and have this conversation. Let's keep talking!

April 3, 2015

The economics of eating disorder advocacy: why you?

If you see something out there that "should" be done, and isn't, it may be you that needs to do it. You won't be paid, you won't get much help, you'll be criticized for it, and you'll rarely be thanked. Do it anyway. Do some small or some big part. Do it so someone else doesn't have to sit shellshocked at their kitchen table and wondering "why hasn't anyone..."

If you are a parent who wants to make change I'm biased but I recommend volunteering for F.E.A.S.T. We built it as a legitimate and trustworthy voice for parents and to parents. We built it because there wasn't an organization that focused on the caregiver role across diagnoses, across national borders, across stages of illness and outcome. There wasn't a voice to say that parents can be empowered with knowledge to help their loved ones recover and thrive. We built it as a springboard for advocates and activists, a way for those of us who made it through or suffered the greatest losses with the help of others to pay it forward in small and large ways. We built it to be there for newer advocates so they didn't have to start over or do the administrative headache of incorporation and organization.

Individual advocacy is nice, but it is with collaboration and finding common voice that we can really be effective. Gathering the knowledge gained by earlier advocates with the new ideas and skills of new advocates we can do a great deal. It is not always easy to work with others but there is such power in working together on a goal. For those of us who started from nothing but a laptop in a kitchen, the dream of a growing movement of parents working together was what got me through some dark, dark days.

F.E.A.S.T. operates on strong principles: focusing on parents, evidence based treatment planning, independence from financial influence, and collaboration. Before F.E.A.S.T. the parent voice was often relegated to a silently supportive role and often expected to be apologetic and grateful to be in the room. F.E.A.S.T. has built a reliable and strong public voice for parents. It relies on the energy and volunteerism and generosity of other parents to take that voice where it needs to go.

Wherever you put your energies my advice is to do it with the pride and the humility of an individual who cares and wants to make the world a bit better for others down the line. I won't lie and tell you it's easy or always fun. Do it with knowledge that others have cleared some of the path the best way they knew how, and that they, too, cared deeply. Do it.

There is a parent out there with a small child who is going to get an eating disorder in a few years. This dad or mom doesn't know anything about mental illness or eating disorders. The first day they seek professional care, or Google, or open a newspaper to see a headline on the topic, or turn to a friend for comfort: that is the day you are trying to change. That parent will never know what you did or didn't do to make that day different, but it matters.

The economics of eating disorder advocacy: does it matter who pays?

In the US, most eating disorder advocacy and activism is paid for by treatment providers. The sponsorships and ads and exhibits finance conferences and putting out newsletters and hosting websites and media campaigns and pay staff and  fund help lines and pay for insurance and accountants and offices.

Although there are occasional grants and foundation funding most ED advocacy depends on the cheerful support of clinics. Although that might seem like a good fit, there are potential conflicts of interest. Just as we need to be clear-eyed about a pharmaceutical company's apparent altruism, we need to think about why ED treatment money might influence advocacy.

Clinics will not support advocacy that conflicts with their business model. Advocacy organizations cannot afford to alienate sponsors.

All this would be harmless if clinics all shared an evidence based model of care. but, they do not. All this could be symbiotic if there were even any minimum standards of care or accountability. It might even work if there were ways for consumers to make good choices between options.

At conferences, exhibitors and sponsors market to referring therapists: offering free trips to tour facilities, giveaways at the table, snack sessions, and ads in the giveaway bags and on the big screen. Rooms and breaks are named for sponsors. At conferences where consumers attend, exhibitors market directly to patients and families with gorgeous displays and welcoming staff. A booth at a conference is expensive, and not a charitable service.

Advocacy organizations need sponsors to exist at scales large enough to have an impact**. 

This is an unwelcome thing to say, but this system has an effect on policy. Any suggestion of standards of care will not fly. Questions about evidence-based treatment fall flat. Debates about treatment methods, or the efficacy of outpatient vs. residential care, are really unwelcome. Clear statements on cause, nature, treatment, even definition of eating disorders are non-existent.

So, when I ask myself why we do not have much of those ideas at conferences or in lobbying or public service announcements and campaigns, I think I know why. When I wonder why eating disorder advocacy is mostly toothless, inoffensive campaigns to tell people to love their bodies, I'm fairly positive why. When I observe that most eating disorder treatment, even in 2015, does not involve families and more often than not pathologizes them, I have to question whether there is a reason that is still acceptable despite the evidence that this does not help patients.
I'm not saying that anyone in the treatment world consciously thinks: I don't want standards because I'm going to be exposed. I don't think there is any deliberate policy: keep parents out of treatment because doing so would be more effective and there would be fewer patients in need of ongoing and higher levels of care. I don't think anyone in the system thinks there is a system. I believe everyone, or at least almost everyone, in the treatment world is doing the best possible work they can, and they feel effective.

The problem is: there really is bad treatment out there and our system of policy making and unchallenging advocacy protects it. The need to keep sponsors happy isn't conscious or deliberate but it still has a clear dampening effect on dissent. By agreeing to disagree on what EDs are, and how to most effectively treat them for what kind of people: everybody is free to do whatever they wish. Not questioning other approaches means not being questioned.
Lives are at stake. Questioning treatment needed to happen in other fields and will have to happen in this one. If no one had challenged autism treatment, or the need for physicians to wash their hands, or ulcer treatment, things would not have changed. Anything that makes questioning more difficult serves to slow the rapid advances the eating disorder field can make. If the financing of advocacy holds us back, we need to question that, too.

*+very few organizations in the eating disorder world refuse sponsorships or donations from clinics. F.E.A.S.T. is one of them. As a parent organization we felt strongly that parents be empowered to make their own family decisions about treatment based on science and personal judgement.

the economics of eating disorder activism: what it costs

Let's talk about money. My next few posts will explore the economics of eating disorder activism.

It doesn't cost a thing to become an eating disorder advocate or activist. There's no qualifications and the price of entry is an interest in the topic. The hours are flexible, the working conditions are, too. The rewards: they vary.

You can start a blog or Twitter feed or participate in Facebook groups for free on your own time and build quite a voice. Anyone can call a legislator, write a letter to a policy-maker, or email a journalist. With time, relationships, and a point of view your voice can really be heard and have influence and be part of larger streams of chatter. I wish more people did, because to go viral a message has to have people to infect!

After a while the time can become expensive, if it takes away from paid work or requires you to pay others to do things you would do yourself. Time is expensive it it means your partner has to work longer or at different work to enable you to do your advocacy. There is an opportunity cost, as well, for having a blank resume when you want to go back to paid work.

There are expenses to advocacy, even at your laptop. Free websites don't look or act like paid ones. Business cards and flyers and postage and newspaper ads all add up. Buying books and access to articles to educate ourselves is expensive. Printer ink, subscriptions, phone calls, software, legal services, donations, memberships: they cost money.

But travel, that's the kicker. Being an advocate and activist (slightly different things) means being there. You can gather a group to meet at the local pizza shop every month for the price of a slice, of course, but in order to be part of the larger advocacy world you have to show up where others are. especially at conferences.

ICED conference, Boston, 2015
Registration for non-members: $640   (membership is $250 a year)
Hotel $239/night for 3 nights but really need 4 = $717
Meals $20 x 6 = $120 (bare minimum, but the conference doesn't serve many free meals)
Transfers and airfare = at least $400
Total: $1877 not including beer

NEDA conference, San Antonio, 2014
Registration: $450
Hotel $184 x 3 nights = 552
Meals: $15 x 6 = $90
Transfers and airfare = $400
Total: $ 1492 not including margaritas

Drive there, find a roommate, eat peanut butter sandwiches, and stay in a sketchy AirB & B nearby, and you can cut a bunch of that down, but it's still a 4-5 day stretch away from home spending money. This is an extreme luxury for most parents and patient advocates, families who have often been depleted by treatment costs.

At over $1500US a trip, an advocate can join the fray at a conference one time. That's one trip, and it often runs much more, and that's only for trips in your own country. One trip does not an advocate make. It can take years of showing up to build relationships to the level that you can make change or have an influence. It takes time to learn the players, gain trust and alliances, to be invited to the table, and figure out where you want to put your energy.

So, how do people pay for being an advocate? Specifically, how do parents do so?

Mostly, we pay out of our own family budgets. I've been a full time advocate for most of the past decade and it has been expensive. Not only have I not taken paid work, even with FEAST paying my expenses for travel and materials for several of those years it is still an luxury activity. Sales for my books, about $1 net each, do not scratch the surface: that is just a way to pay a few of my advocacy expenses. Any money I earn, plus a great deal more, goes into paying to be an eating disorder advocate. When I worked and traveled for FEAST I had no salary -- FEAST's staff is all volunteer -- and no other job. I'm not unusual here: none of the authors or independent advocates I know make any money for their work: we SPEND to be out there.

When we are invited to speak, which are priceless opportunities to get the word out, we almost always PAY to attend the event and to travel there, plus registration.

When we volunteer for committees and are invited onto boards that time and money is our own to give, but our responsibility to pay.

Let's not even bring up the cost of nice shoes!

Unlike our fellow advocates who are professionals in the field we do not have our travel and registration subsidized and we do not get professional accreditation or fulfill licensing requirements by attending events. It isn't a professional expense and doesn't go on our resume.

So, why am I telling you this? It isn't to whine about my finances or to complain. That has been my family's choice.

I have two points. One is to laud the volunteers in mental health advocacy and eating disorder advocacy. You can't imagine how much passion and commitment this work requires. Parents who do it are doing so purely to help others avoid pain. I don't think the public understands the personal sacrifice and commitment that advocates offer willingly. I don't think armchair observers understand that those out there showing up also represent the vast majority who don't have the luxury of time and money to get out there and influence the conversation and policy.

This goes for parent advocates and also patient advocates. They take on often full-time work for no pay and no benefits JUST TO HELP OTHERS. They start foundations and organize events and run websites and write books to help others, not for fame or fortune or advancement. They feel that change is needed and they feel a responsibility to be part of it.

So when you are asked to "like" a post or retweet or make a donation keep in mind that those making those actions happen are almost always volunteers giving of themselves to help you. When you see an advocate out there organizing something know that they are putting their money and their personal life into it. If you ever wonder "why isn't someone doing X" remember that someone has to step up and do and pay for it.

I don't know what the solution is. We need parents and other advocates out there part of policy-making and advocacy. Our voices matter and make a difference. But the price is high and there is no angel to pay for it. There are so many wonderful advocates out there who have he passion and skills but can't afford financially to do it. Without patient activists and parent activist those voices don't get heard and policy goes on without their point of view. Without those volunteers most advocacy doesn't happen. Phones aren't answered, events don't happen, and website searches can only bring up what people have created. Policy-makers and journalists don't know the difference between well-paid nonsense and real lived experience.

Money may seem like the last thing to matter when it comes to advocacy, but it matters a great deal.

**Two groups asked me to be on panels to speak at AED this year, and both were accepted. I cashed in all my air miles and piggy bank, but still can't afford it. I applied for and was awarded an AED carer scholarship for which I am very grateful. It doesn't cover the whole expense but it really helps.