July 17, 2012

the Internet is reading my mind

Things I learn when catching up on the blogosphere with my toes in a lake:

That Charlotte needs to be put in charge of parenting through an eating disorder.

That as dumb as pinning EDs on GI Joe may be, there's dumb and dumber trivialization of mental illness and other people are calling b*&%s(*t, too, as in No, the web is not driving us mad.

That tired ideas about parenting and eating disorders still live and thrive under a new kind of packaging that starts out saying "This isn't your fault" but ties it up with a "here's where you need fixing." I'm sorry folks, but saying "some shared characteristics exist in families where an eating disorder is present" is not only demonstrably and maddeningly untrue but it is "blaming." While patients with mental illness do often report the people around them acting in certain ways that doesn't make those observations true. I know it is hard to give up on the idea of cold, disconnected, over-bearing, self-involved parents but as long as you base your family interventions on these false assumptions and employ confirmation bias to evaluate your efforts, you risk harming the patients you want to help. Parents of eating disorder patients are much like all parents: good, bad, and in between. The diagnosis of our children tells you nothing, NOTHING, about our families or even the patient except that they have this mental illness. 

That xkcd is reading my blog.
http://imgs.xkcd.com/comics/argument_victory.png

10 comments:

  1. Sigh. The attached article in your piece does read as blaming. As a counterpoint, what I tried to do in one of my posts on this very important subject is to point out, using the book the Five Love Languages by Gary Chapman, that we all do need to spend more time understanding each other. This is where family therapy comes in. http://www.desertdwellergettingon.blogspot.com/2011/04/all-in-family-and-elsewhere.html
    People are people are people. To single out some quotes to substantiate the theory of shared characteristics is very narrow-minded. The fact is, though, and as Dr. Janet Treasure has so wonderfully addressed this in the book _Skills Based Learning for Caring for a Loved One with an Eating Disorder_ , the parents or social structure must step up and may need to modify their/its behavior to help a person to get on the road to recovery as in http://www.desertdwellergettingon.blogspot.com/2012/03/what-about-contributing-to-part.html
    At this point I've attended a heck of a lot of family week gatherings and inevitably the families have come to realize they do need to alter behavior. This does NOT mean that their behavior CAUSED the eating disorder but it does mean they came to realize their loved one needed support that they (the loved one) perceived they were not getting.

    ReplyDelete
  2. What a nasty, accusatory piece of fiction by the Paulson man. I have commented.

    ReplyDelete
  3. Paulson's blog post is factually inaccurate. He doesn't cite any data to support his contention that within families of children or adolescents who suffer from anorexia nervosa "shared characteristics" and "commonalities" exist. He's making this up. It's pseudoscientific and ignorant. I commented on Paulsen's blog too.
    Paulson is affiliated with Summit in Sacramento. Summit is affiliated with Eating Recovery Center in Denver.
    CB-US

    ReplyDelete
  4. Jennifer,

    I'm of mixed mind on the Family Week and changing the way families operate issue. On the one hand, life with a person with an eating disorder requires big changes - we simply can't go on as normal and ask treatment to fix the person independent of the family's interactions. Not only do we have to be caregivers and create a temporary environment specifically for recovery, most of us find that the way we thought about food and our bodies will change - it's a real conscienceness-raiser about our society's madness around appearance and food. And, since we are usually learning that our loved one had special needs all along in terms of anxiety and mood regulation we often have to learn parenting skills to nurture their growth and development we may not have known how to do before but now don't have the luxury of doing poorly.

    But this is still a minefield when it comes to treatment. Let me count the ways:

    Entire clinical approaches deveote themselves to fixing families on the premise that communication or parenting or parental modeling are broken and the illness is caused by that.

    Also, I doubt that ANY family plucked out of a crowd would be found to have ideal circumstances around these issues. Why is the presence of an eating disorder in a family now open season to fix families? Perhaps we want to hold parents of ED patients to a higher standard than all families ? Sure it would be great if we could intervene in all families and fix their weaknesses but it feels a bit like open season on the family and inevitably leads to a sense that being a normal family is unacceptable. Would we do this with all families facing cancer? Sure it would be lovely, but even if we did we wouldn't even dream of conflating it with the illness itself.

    Last, there is a serious risk to doing this sort of post-hoc speculating. Parents are terribly eager to do ANYTHING to help their kids and will buy into all sorts of soul-searching and ruminating. But can we afford time and money and energy and possible crossed signals when we're saving a loved one from this horribly serious illness.

    As others have said, these specious connections between family functioning and eating disorders are endlessly repeated but originated in antiquated theories and self-reports by floridly ill people and a lack of recognition of how stress and living with ill people affects the family. Co-morbidity, too, and multiple affected people in a family, mess with these statistics and data gathering.

    Large scale studies of families and patients have dispelled the myth that we are all the same or that the diagnosis gives us any great insight into the families that face this. We do know that the stress of caregiving a counterintuitive disorder in the absence of consistent, helpful clinical support makes us nuts, though. Nuts and angry.

    When more families get more support from the growing number of clinicians who take a matter-of-fact, individualized, benefit of the doubt approach to each family coming to their office we will have more recoveries and less damage to all involved. I also think the newer era of clinicians will enjoy their work far more and be more effective.

    ReplyDelete
  5. At what point does a family, by "changing" itself, actually end up, inadvertently, accomodating and prolonging the anorexic behavior? Shouldn't the family stand its ground and insist that the behavior change, not the family?
    CB-US

    ReplyDelete
  6. Depends on whether and what accommodating behaviors we have! I did some things at first that were enabling and accommodating. I didn't know better, as I didn't understand how the illness made my daughter act or think. For example, I would engage in logical discussions about food that only fed the thinking and undermine my own authority and my daughter's confidence in me. We got angry, we begged, we allowed triangulation.

    In the category of things we changed permanently: dieting, talking about people's body size, and not taking our daughter's anxieties seriously enough.

    I didn't have a clue how to parent through the experience. I learned it piecemeal by drawing from a multitude of sources and by making mistakes. I would really have benefited from professional support that taught me about the illness, empowered me, helped me work out how to work with husband and others, and how to keep my own sanity during the process.

    I did change myself, and our family changed, in response to our daughter's illness. She did not get the illness because we hadn't done those things before, but it aided her recovery and our family's quality of life to make changes.

    The key is that not all families will need the same assistance in the same areas and some families won't need much help at all: just permission to act. But most WILL need help and it should, in my opinion, come from clinicians who are experienced, skilled, well-grounded in the literature, and coming from a perspective that strengthening and supporting families - rather than pathologizing - is the right starting point.

    ReplyDelete
  7. Our family did not diet or talk about body size. (Our daughter nevertheless got restricting-type anorexia nervosa.) Let's assume, however, for the sake of argument, that a parent does diet. Should the parent stop just because the child develops AN? A reasonable argument could be made that people with AN eventually need to be able to restore normal eating patterns in ALL social circumstances, even when other people around them are, for example, dieting. Otherwise, if something like dieting is stimulating the anorexic behavior, isn't the behavior likely to return when the sufferer is exposed to the stimulus elsewhere, such as when a college rommate goes on a diet? Isn't it the response, not the stimulus, that needs to change, and isn't it impossible to change the response unless the stimulus is presented?

    ReplyDelete
  8. "The key is that not all families will need the same assistance in the same areas and some families won't need much help at all: just permission to act. But most WILL need help and it should, in my opinion, come from clinicians who are experienced, skilled, well-grounded in the literature, and coming from a perspective that strengthening and supporting families - rather than pathologizing - is the right starting point"

    Amen to that.

    In my limited experience I think that clinicians are gaining experience with this and learning how to strengthen and support different kinds of families where they are, rather than expecting them to have a certain set of characteristics and to fit one mould. Some of us must have given them more of a challenge than others though ;-)

    ReplyDelete
  9. I quite agree, actually. It's the response that is at issue. It would really depend on whether the family - the parents - want to make changes and whether those are to help with recovery or something permanent. It would be very individual. And SO IMPORTANT to parse this from cause.

    I deeply resent the idea that parents need to learn to express their emotions, communicate better, or examine their personalities and do ropes courses to help their children recover - for example. But for a particular family they may find that they will be better at supporting their kids if they make changes or try things like this.

    Context matters here. The key is that we can't generalize about parents based on the diagnosis and that ED treatment should be just that, not a pig-pile-on-parents time.

    ReplyDelete
  10. Laura, so good to see some positive remarks coming out of this conversation!

    ReplyDelete