March 22, 2015

Parent engagement vs. loving detachment? Not the only choices.

It always makes me queasy to appear critical of other parents who have faced the hellish experience of having a son or daughter kidnapped by mental illness. As a parent advocate this is especially sticky  as I know there are plenty of folks out there all too happy to confirm their negative view of parents.

So, actually, I'm not mindlessly supportive of parents. I'm supportive of the parental role in caregiving. I'm supportive of parents doing the best they can, and of throwing off the myths and lack of treatment access that have characterized parents of mentally ill patients.

I reserve the right, and responsibility, to criticize the actions and attitudes of other people who are parents. I respect the right of all parents to their opinions and by that token hold them accountable for what they say as we engage in a mutually respectful debate.

I disagree with the mother who recently recommended that parents "You Can't Save Your Child From Their Anorexia." I think the message of the piece -- that of self-care and acceptance -- are lost in the heartbreakingly damaging title and in the equally heartbreaking conclusion that "none of it seemed to help."

I'm also going to come right out and express my dismay at fellow parents for missing the point of what the mother is actually saying. Her goal was to support other parents. She's saying what we all know is true: that in that time and in that health system she truly was not given the tools and support to help her daughter.

We all know this was true, and still is, in most places. We need to criticize THAT, and make sure to get the urgent news to parents that we CAN AND MUST engage in treatment and that does not mean we will drown with our beloved children. I have compassion for this mother and the choice she was made to make. I'm sorry she is recommending it to others.

I'm also saying out loud that this is not about Family-Based Treatment/Maudsley. By making it about that, parent advocates unknowingly into a dynamic that serves parents poorly and FBT as well. Parents need to be involved in and supported during treatment in every setting, every treatment type, every stage of illness, every diagnosis. Don't let FBT be the reason or the reflexive solution. Don't let people who dismiss FBT throw out the message that parent involvement and food is medicine at the same time.

FBT is not and should not be the only situation where parents are empowered and involved.

I'm heartbroken by the folks who will point at that headline, and the sad experience of this parent, and use it to do terribly harmful things:

  • Reinforce a belief that parents can not and should not help
  • Reinvigorate the idea of "enmeshed parents"
  • Make FBT into a zealot's cul de sac
  • Allow despairing parents to think that they should back off and "save themselves" when their loved ones need them most

Here's what strikes me most in the debate over this article. ED loves it. ED adores it. ED could have written it.

Parents shouldn't have to back off to save themselves. We should be able to be part of the picture in a positive, supportive, and supported way. We should not drown with our kids because both our kids and ourselves get the help we need early and ongoing.

There are times when ED wins the day, or the year, or even a life. Parents don't need to drown no matter what the outcome. The same is true for cancer or for schizophrenia. There are other choices between letting go and drowning. We need to ALL work to help families not have to make either choice.

March 20, 2015

Zero sum advocacy

I was pleased yesterday to hear by Twitter that someone referred to me in a presentation at a conference. Twitter is wildly annoying to me in most ways but really good for the sort of immediacy and community it can offer.

The tweet said:

Peebles cites on importance of parents' awareness of "getting your kid back" as marker of recovery

I was delighted, as it is always nice to know that someone thinks well of what I believe, and say. I tweeted back that I was flattered.

Then, because these things happen in public and everyone is entitled to an opinion, someone said:

a good suggestion but very parent focused outcome. Patient centred outcomes?

Which, of course, this tweeter has the right to say.

But, what is up with the "BUT?"

It reminds me of many such debates where advocacy for any good thing can be taken two ways. One: as a simple positive. Or, as taking away from someone else.

Advocating for breastfeeding gets taken as an attack on those who don't or can't. Advocating for women is seen as not caring about men. Early intervention advice is seen as injury to the chronically ill.

Why is a positive so often seen as taking away from others?

There is no LOSS to patients when parents are part of the equation here. In fact, an empowered and hopeful parent is an important and often pivotal asset to recovery. It would never occur to me to even think that parents looking to full recovery would be in any way NOT a "patient-centred" outcome. It is ABOUT the patient. The patient's best interests are also the family's best interest. But that is the way some people think. It makes me sad. We are all on the same side.

March 17, 2015

Will banning thin models save lives?

Really? Really?
There is a widespread belief that having very thin people be visible to the public will "encourage" "cause" "trigger" or "inspire" eating disorders.

The French government is now weighing in on this topic with a finger wagging "ban" on fashion models being too thin. They're not the first, nor the last, as this is a type of campaign that keeps going on and I need to get this off my chest:

You're making it worse.

And yes, I'm still a feminist.

By tut-tutting and shaming people's bodies -- even emaciated models -- we not only offer the media the opportunity to haul out their most thinspirational images but we embed the concept that people with mental illness are driven mad by desire to look a certain way.

Being a feminist and a parent and a woman with a body to walk around in I have no time or patience for the catwalk at any level.

I also think boxers being publicly weighed in their tighty-whities and gymnasts being bent into permanent childlike shapes and anti-obesity posters in the schools and the fact that entertainers of all sizes except a 2 are considered punchlines are a problem for all of us.

But for the love of Pete, setting the standard for indignation and action at the very tallest and thinnest among us is almost genius if you consider pro-ana a brand. These campaigns banning models could be written by ED, and in fact I often wonder if they are.

Banning "too thin" models may save some model's lives, but that's not what these campaigns are about, and we all know it. This is about shaming bodies for being "too" something, and a massive misrepresentation of mental illness.

I wish eating disorder advocates and activists would stop creating, tagging, liking, retweeting, and tut-tutting over models. If we want the topic to be taken seriously we have to realize that we, ourselves, need to model a view of eating disorders that isn't about thinness, or "banning" people from view.

March 14, 2015

Severe and Enduring Hope

It may be that I'm a parent. Something inherent in the position of caregiver and loved one and family member and lifelong connection, perhaps, that makes it not only impossible but offensive when I hear terms like:

Severe and Enduring Eating Disorders.

This term, mostly used by researchers and clinicians operating in the context of national health systems around the world, is the equivalent of "We've Given Up." It is a sign that the system accepts that recovery is no longer the goal, only a sort of palliative half-life. Families and clinicians switch gears to "quality of life" instead of recovery.

Well, I am a parent and I will never give up. I don't know any parent who will, really. While there is any breath, any chance, any avenue or angle or possibility we don't and should not accept concepts like this.

Treatment may have failed the person, and there may not be any law that compels their care, and the patient may indeed be lost to anosognosia and misery right now but that is not THEIR problem it is ours. It is not their fault or choice it is ours. The responsibility is ours, as a society.

SEED is a term, and there are others like it, for when we have failed to diagnose and intervene early and well, failed to follow up, failed at relapse prevention, failed to address comorbidities, failed to recognize anosognosia, failed to account in our laws and customs and healthcare systems. But the failure is ours as a society, not the patient's. If we are to label anything it is ourselves, not the patient.

The patient may still be suffering but they do not have SEED, we have SEE failure to treat.

Thank you to Lisa at F.E.A.S.T. for her wonderful post on this topic this week. Parents see this differently.

March 11, 2015

Why Do Dieters Gain Their Weight Back?

I repeat myself too much. I repeat myself too much. So let me freshen my usual diatribe by giving you one of the best people out there to explain "why do dieters gain their weight back?"

*and can I just say that one of my more sublime moments was, literally, dancing with Dances With Fat?

March 10, 2015

"Love Your Body" Two campaigns, two completely different meanings, one problem

Today in my email I received an unsolicited junk message promising I will "Love My Body Again" with a scheme for weight loss. I deleted it.

I also received an invitation to join a "Love Your Body" campaign by some lovely folks who think that if we encourage women to love their bodies they will:

1. Love their bodies
2. Not get an eating disorder

The second email was not junk mail -- but it troubled me, too.

1. Body image is really complicated
2. I don't believe loving your body prevents eating disorders

Actually, I believe both of these emails are bad for people with eating disorders. Not equally, but yes, I do.

The first email assumes that I want to lose weight, that doing so will make me happier, and that weight loss is a magic that exists out there even with all the evidence (including these ads) that show there isn't. This message is bad for everyone.

The second email does something worrying, too, though, and sadder still as it comes from those who care about and seek to help eating disorder patients. It implies that those with eating disorders failed to adequately love their bodies and this is why this illness happened. That they could, if they tried, just feel better. That if we all try try try hard enough we will feel great and accept who and what we are and how we look...

There we go: it's still about looks. The spam promised a new look that I could love, the other email promises I can love however I look. It's still a matter of image and appearance.

I deleted the second email, too.

March 6, 2015

Reasons to love the eating disorder parent community

what it looks like when F.E.A.S.T. parents
accompany their friends down the other
side of the sand hill.
I have many personal, and practical, reasons to love the F.E.A.S.T. parent community. Let me give you a few:

1.     The fierce, dogged, unquenchable commitment that parents have to their kids. Is there any other relationship like it? I think people forget, because perhaps it seems so obvious, but it is still miraculous how committed and courageous and resourceful parents can be. We may not be able to fix everything but being in this parent world has offered me a view to parental love. Even in the face of extreme hardship, scary prognoses, lack of support, rejection by and even loss of a child, parents step up. If you met or knew the parents I know you would be staggered by the heroic love.

2.     The selfless, generally invisible nature of parent advocacy. Most of it is done by moms in their dining rooms or in the car between errands. Most of the names are unknown or barely known. They don't call attention to themselves. The parents who are making F.E.A.S.T. and other organizations run do so because they care about making sure other parents are not alone or without information. I know these parents and their deep sense of responsibility and caring.

3.    An emphasis on results. Parent advocacy isn't about making parents feel better. It's about making parents more effective at helping the patient and nurturing the family. The problem is "ED," not the person. Parents are on the side of their loved ones, and that means persistence toward the goal of recovery and a rich and fulfilling life.

4.     The F.E.A.S.T. community, in particular, believes in science. Science is a tool to understanding and analyzing and applying information. When parents put their support behind science they are saying that results matter, that understanding the illness is their responsibility, and that there is hope in reason.

5.     Strange fact: eating disorder parents are great to be with. Do we fight? Yes. Do we trip over one another? Yeah. But this one thing we share makes this wonderful bond that allows for both engagement and vulnerability. Before I fell down the ED rabbit hole I would not have imagined being friends with people on this basis but now I have to say that MOST of my best friends are fellow ED parents, and I'm so glad.

6.     Around the Dinner Table. The longest running conversation about eating disorders and parents: a thriving, fascinating, sometimes silly, completely unique forum.

Hannah, we're cheering!
7.    Hannah. Oh, Hannah, I love you. If you want to understand how special the F.E.A.S.T. community is you need to read Hannah's blog post for F.E.A.S.T. and celebrate her insights and recovery as we all do. A wise woman just as complex and inspiring and personally cared about as all of our kids are -- I am so grateful she let us play any role in getting her life back. Erm, and for her face when she sees adults tap dancing on tables in the night: priceless.