Hope as a verb: DO! hope

So....Hannah's blog post (find here) has been spinning in my head since I received it last week.  Much about the post is brilliant, but what I have been turning over most is what she says about the limits of, or perhaps the 'role', of hope:
So while my story is one of hope, it is not a how-to guide. Hope is a wonderful thing and I am truly honored if my story can provide that for anyone but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary.
Hope is the reason to take action.  Think about that.  This is not touchy feel-y 'optimism' hope.  Hope is the reason to take action:   Hope as the agitator and catalyst.  This is hope under pressure. This is hope shown through how you act and what you do. Hope as a verb.

This was in my head when I read an study entitled "Eating Disorder Symptoms and Quality of Life: Where should Clinicians Place their Focus in Severe and Enduring Anorexia Nervosa?" (full article linked in the January edition of International Journal of Eating Disorders.  

Severe and Enduring Anorexia Nervosa (SE-AN) is a term increasingly used to describe individuals with a self-reported illness duration of over 7 years.  I have to confess, I dislike this term quite thoroughly.  Naming is a powerful tool. Naming is how we make sense of our world.  Naming gives meaning and power to a term. 'Severe and Enduring Anorexia Nervosa' sound like some diabolic squatter-  like a really bad case of anorexia just took up residence and refused to leave.  If I had naming power I would choose something more along the lines of:

  • "What it looks like when the illness is misdiagnosed and/or left untreated for years-AN" or, 
  • "When we are confounded by particular combinations of comorbids and simply don't know how to treat effectively - AN".  or,
  • "Phased out of Adolescent care under old treatment models and languished, now waiting for patient to 'choose' recovery-AN" 

I could go on but you get my point: naming is informed by perspective.

The study poses the question:  Where should clinicians place their focus with individuals who have been failed by treatment?  The article states:  ...Existing treatments for AN place emphasis on primary medical symptoms, most notably weight gain. This can be seen as indicated for the majority of individuals with AN where the traditional definition of recovery that includes full symptom remission is the ultimate goal.  Offering treatment where the clinician is focused on weight restoration and recovery could be seen as ill matched to a patient who has been struggling with their disorder for many years and does not share these goals.

The study is a secondary analysis of data acquired during an earlier RTC exploring whether the focus for those with SE-AN may need to change to primarily address quality of life issues.  It is, of course, not an either/or situation and this study does not present it as such.  Rather the study cautions that treatments seeking solely to improve quality of life may be unlikely to produce lasting change and clinicians should maintain a focus on weight and behavioral symptoms as much as on improvements in quality of life.

In other words: Do not give up hope in recovery!  Even when treatment fails....do not give up hope.

Where should clinicians place their focus with individuals who have been failed by treatment?

Hannah writes this in her last paragraph:
I want to tell caregivers that your loved one wants to get better even if they can’t show it. Nobody wants to live in the hell that is an eating disorder but getting out seems impossible and they need you to believe in recovery for them.

Hannah is speaking directly to parents with these words but they are applicable to all those who work with and on behalf of our children.

Do not stop believing in recovery.  Hold fast and tight to 'hope' in your work and remember, in the ED context, hope is a verb..... you don't feel hope you do hope.  DO hope in your work....no matter the length of time, no matter the 'severity'....DO hope.



Reference:

Bamford, B., Barras, C., Sly, R., Stiles-Shields, C., Touyz, S., Le Grange, D., Hay, P., Crosby, R. and Lacey, H. (2015), Eating disorder symptoms and quality of life: Where should clinicians place their focus in severe and enduring anorexia nervosa?. Int. J. Eat. Disord., 48: 133–138. doi: 10.1002/eat.22327

Comments

  1. I agree that naming is a powerful tool that can have negative consequences. And I believe in hope or I would not still be doing what I'm doing. What I struggle with as the parent of a person who has been in battle with an eating disorder for more than 25 years is there is indeed a "confounding set of comorbids." The eating disorder for many people who are invisible for the most part does not exist in a vacuum. There can be a severe co-morbid for which there does not seem to be an effective medication. What then? Perhaps quality of life indeed becomes part of the treatment in hopes that at least one of the co-morbids will burn itself out so that the person can actually focus on what needs to be done. Or perhaps quality of life thoughtfully and carefully provided will carry the person until an effective medication appears. Taking this a step further, I think we need to consider that labeling the caregiver or family or the team or the diligent therapist or the diligent psychiatrist [diligent meaning using all known resourcese] as the source of the failure can have its harmful consequences as well. Perhaps that word needs to be deleted from the conversation, too - for both the person with the eating disorder as well as those who are endeavoring to help.

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  2. What desertdwellerjh said! Let's ditch the four letter "f" word

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  3. I don't have a particular reaction to the four letter "S" word (SEED) - it's just an invented term for a longer lasting illness and doesn't have to be an excuse to give up. As far as I can see from the abstract (unfortunately the link to the whole article isn't working for me) the study shows that clinicians should NOT give up on active treatment for their patients whatever the length of the illness. I do totally agree though that the four letter "H" word (HOPE) should be a call to action and used at all stages of these illnesses

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  4. I have a problem with the term SEED and the term AN. Let's face it, with an approximate 10% death rate, we should call the most severe cases Anorexia Fatalis and support research to reduce the death rate like we do for any other deadly illness.

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