March 29, 2013

Almost confusing

Carrie Arnold's post on "Almost" anorexia is what I'd say on the topic if I had her writing talent and wit, so I refer you there for that.

We have a problem in this field because we all go out and do our advocacy without having central principles and understandings between us. Some of us believe EDNOS is the same as "disordered eating." Some eschew labels altogether and just want attention to anything related to eating and body image. Some see anorexia as a narrow diagnosis and others expand it to cover anything similar.

Any criticism of this language problem can come off as being divisive or mechanistic, but I really believe it is at the core of why this field lacks common ground to share.

 As a result, our arguments about why we use certain words and what we find most important to talk about or NOT say become criticisms of one another.

One approach would be that we all stay silent. Well, that won't work.

Another would be only express agreement. Dishonest.

We could form groups and bully others into saying nothing, or just shout louder than one another... no.

More talk among us would help. I find that those who disagree with me in this field rarely know me well, or have a clear grasp of what I believe or why. I make it my business to understand the thinking and disagreement of others. I welcome those conversations.

My heart falls when I seen new terms added, or current terms used fuzzily. I don't buy the idea that all advocacy is helpful and that any attention to the issue of EDs is good.

Until we start having these conversations among us, we will not present a united voice to the public. The solution is knowing one another and talking and listening and finding common principles where we can.

I agree with Carrie that "almost" anorexia is a problem on several levels. More worrying, however, is the underlying lack of agreement in the field that leads to these problems.


9 comments:

  1. So important for us to be having these conversations in the eating disorders field. I'm glad to see that the author of "Almost Anorexia" commented very respectfully on Carrie Arnold's respectful article on this new book on EDNOS which will soon be FEDNEC.

    I wish for a time (soon) when all conversations can be this courageous and respectful in this field. It's okay to disagree, respectfully. There is far too little research and when we don't have enough information, people grasp onto what seems to fit. As we've learned, one size does not fit all.

    Thanks Laura for all of the courageous conversations you have had and continue to have. I know I have learned from you and we haven't always agreed on everything and I'm grateful to know that you'll always talk with me directly and respectfully when we do disagree. This is how we all learn and move forward...as I learned when you wrote my foreword. :)
    Becky Henry

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  2. Hi Laura,

    This is Jenny Thomas, co-author of the book mentioned in your post (Almost Anorexic). First, thank you for continuing to build on the productive discussion that has taken place since last week's publication of the Daily Mail article (http://bit.ly/10sXYsP). As I mentioned in my response to Carrie's blog post, I think we agree more than disagree on the overall subject of eating disorder classification and its importance to improving diagnosis and treatment.

    Your posting here further highlights a point on which you, Carrie, and I concur: To meaningfully advance ED treatment and research, we need open discussion on how best to empower the public to access and understand the importance of subthreshold syndromes. Specifically, we should weigh the relative merits of constraining discourse to purely technocratic (DSM-5 FEDNEC) or obsolescent (DSM-IV EDNOS) terms versus using more descriptive and transparent language that, while by no means perfect, draws in the readership that would benefit most from learning more.

    Again, thank you for your thoughtful comments and I hope we can continue our discussion at the ICED in Montreal. It has been a pleasure collaborating with you on the Scientific Program Committee.

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  3. Can we have a start point? A blue print of terminology? Or is there one already out there?

    Brain disorder is case in point. It is a beautifully descriptive non-judgemental phrase (so much better than mental illness) but what does it actually mean? Does it have a "clinical" definition?

    I would be really interested to have a start point, Laura - perhaps another blog? - on which to debate techno vs descriptive...

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  4. Jennifer, I appreciate you stopping by and giving a fuller picture. The problems we have, as a field, are complicated by things inside and out OF the field. The media, and framing messages to the public, and how we talk among ourselves all ask different things. It's hard! I don't have any solutions to suggest except that we do better among those of us really involved with EDs to get on the same page.

    As Becky mentions, we actually DO have disagreement at times but mutual respect and pushing through these uncomfortable discussions is the way.

    Charlotte, I think we have to stick with the DSM, even though I hate it and disagree with it! The necessity for me is a common starting point.

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  5. You have had enough rants from me on the DSM IV but what I would change in the AN category

    Refusal to maintain - Change "refusal" to "inability"

    denial of the seriousness of the current low body weight. - "denial" to change "(cognitive?) inability to understand" or "inability to perceive"

    Intense fear of gaining weight or becoming fat, even though underweight - keep in references to "intense fear" - take out references to fat and body shape!

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  6. Some of those changes are on the new DSM!

    The reason I say stick with the DSM is that then we can argue about and influence and be discussing the same thing and we can treat the topic as we do other illnesses. When we don't, we get the media and advocates and even clinicians making stuff up without any accountability. I know people will still make things up and create theories and catch-words but as long as there is a standard there for us to refer to (and FIGHT) we are at least all in the same room and there is some accountability.

    I welcome the improvements in the DSM - they are steps forward.

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  7. "Brain disorder is case in point. It is a beautifully descriptive non-judgemental phrase (so much better than mental illness) but what does it actually mean? Does it have a "clinical" definition?"

    Good question, Charlotte! Framing mental illness (I'm with you on that being a terrible term) as a "brain disorder" has actually been shown to not be quite as non-judgmental as one might expect. Corrigan & Watson 2004 discuss this in the example of schizophrenia, how this biological explanation may decrease stigma regarding "onset" (cause, attribution, etc.) but may actually INcrease stigma re:"offset" (chance of recovery, ability to live a normal/productive/full life, prognosis, etc.)
    http://schizophreniabulletin.oxfordjournals.org/content/30/3/477.abstract

    "Biological explanations may also imply that people
    with mental illness are fundamentally different or less
    human. Research has shown, for example, that disease
    explanations for mental illness reduced blame but provoked
    harsher behavior toward an individual with mental
    illness (Mehta and Farina 1997). The studies suggest that
    this harsher behavior may have been the result of seeing
    the person with mental illness as physically distinct—
    almost as a different species. Phelan (2002) reminds us
    that in the not-so-distant past, biological and genetic
    explanations for stigmatized conditions were linked to a
    range of harsh policies, including marriage restrictions,
    sterilization, and even extermination." (478)

    They argue that it would be unethical to discount neuro/bio/genetic influences but that they must be balanced with "a multidimensional approach, providing the public with facts that challenge the variety of myths that maintain mental illness stigma." (478)

    IMO, "treatable brain disorder" reads very very differently than simply "brain disorder."

    As someone with a long history of anorexia, I would almost prefer for people to think that my eating disorder is my "fault" than to make judgments about, say, my intellectual capacity, capability, and so on that one might think are impacted by my having a "brain disorder." Would the lay public want to hire someone with a brain disorder? Marry someone with a brain disorder? Have someone with a brain disorder make important decisions? I worry that with EDs framed in this way, the stigma of anorexia will follow me even into and post-recovery as someone fundamentally different, flawed and brain damaged.

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  8. JT

    Whilst I understand completely your last paragraph, I must disagree. I regard all mental illnesses as - well, to be frank - "brain misfiring neurone f%$£ ups". This does not mean they are not curable or treatable or the patient's fault. And yes, I know plenty of people who have good jobs with mental illnesses, have married two with them and followed important decisions made by them and others, without the world ending.

    I do not regard someone with a treatable brain disorder as brain damaged, in the "I've had a car crash and need to learn to speak again" type way. Any more than I regard someone with diabetes as fatally physically flawed.

    I like fundamentally different people - after all, what is normal?

    Do you think the DSM VI would accept "treatable brain misfiring neurone f@£$ up" as the new definition?

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  9. I hear your concerns about stigma and how people will objectify or judge. These are real issues and can't be dismissed.

    Yet I continue to believe the best reason to find common language around these issues is to then bring our language in line with the truth - which may or may not be welcome. If the truth is that people with these disorders have something very different going on in their brains we can't avoid saying it. The fact that the public and patients may not understand that, and may have a poor reaction to it, is unfortunate but part of the progress of society toward better understanding what we're dealing with. If it is true, then we should say it.

    That brain difference can then be treated as we do diabetes, or a concussion - treated properly and then be part of the medical history but not necessarily the ongoing problem for the patient.

    Hiding from this difference has led to chronic suffering, blaming patients and their families, ineffective and frustrated clinicians, and misunderstandings by the public.

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