Thursday, June 9, 2011

My Turn

Not much gets my blood boiling these days.  Lots of breathing and choosing my thoughts helps that. But as a parent of a child with an eating disorder when I encounter the old treatment beliefs about families being a piece of the "What causes eating disorders" puzzle...you may as well have told me, "You stink as a mom and it's all your fault that your daughter nearly died and is still sick after 11 years."  Whatever.

Here is my response to a treatment provider who blogged about eating disorders causation and the only puzzle piece (out of dozens of potential causes) that she focused on was family dynamics. Puuhhhlleeezze.  Stop it now.

Here is my response for the record (been waiting a really long time to say this to professionals who still feel that if it weren't for pathological parents we wouldn't have eating disorders)....One actually said that to me last fall - I remained calm...but let me tell you, when people ask me about therapists in NYC...her name is on the "DO NOT CALL" list.

 
As a parent who is now living with the heartbreaking effects (long term estrangement from my adult daughter) of the treatment model now referred to as "parentectomy" I was very saddened and angered to see the focus on family in your blog post about Causation. http://www.huffingtonpost.com/judith-brisman-phd/eating-disorder-causation_b_863007.html?show_comment_id=91295613#comment_91295613,sb=587689,b=facebook

As "Charlotte - UK" stated so eloquently: "...to even imply that they do may put at risk the health and lives of eating disorder patients, by alienating the carers who continue to love and care for them long after the insurance money runs out." 

And, as Dr. Sarah Ravin says, "But if there are no obvious familial or environmental issues fueling the disorder, please don’t waste time searching for them. You aren’t doing the patient or the family any good by “being curious,” or “just exploring.” You are simply satisfying your own voyeuristic drive..."

I too am 100% for more research, do not get me wrong.  We need it. In fact I am starting a world wide campaign with the AED to raise millions of dollars for eating disorders research. Private funding. From parents.  There are at bare minimum 70 million of us out there who love someone with an eating disorder and we can and do make a difference.  AND we are not all pathological. Thank you for stating that, "I've also seen an extraordinary array of health and resilience."  I completely understand that you see and hear about tons of pathology.  AND as other commenters have shared - not all children of pathological parents develop eating disorders.

What I am very curious about is with the vast complexity of contributing factors to eating disorders what the reasoning was for focusing on the family piece.

Why was there no mention of the fact that these are neurobiologically-based, genetically transmitted diseases?

What is the purpose of putting the family under the microscope when, as you state, "For these kids, it is unclear what in the family may -- or may not -- have contributed to the heartbreaking disorder that can destroy a teen's life as well as that of his or her family."?

As you shared, focusing on the family was for so long the treatment protocol. It is challenging to shift gears when we were trained in a certain paradigm and then learn years later that it was wrong.   Especially when there is evidence of pathological families parading through your office daily, not to mention the distorted thinking often present in eating disordered patients which often sounds real to the care team.

I appreciate your apology and I hear a 'but'..."That being said...bingeing...can all be turned to...".  It is time to really truly embrace the scientific evidence as well as be aware of the long term damage that can be caused to a family by seeing them as part of the problem.  We have not done that with chemical dependency for years.  It is time to stop with eating disorders.

I am grateful to see your sentence showing that shift, "Whether they lock in as a significant disorder most likely has to do with genetics and physiological predispositions, not the family."

I would be willing to bet that in any other life threatening illness we would find pathological parents...but no one is looking at the "family dynamics" when a child has cancer...that would be cruel and a waste of precious time.
Respectfully,
Becky Henry

4 comments:

Laura (Collins) Lyster-Mensh said...

Thank you, Becky. I so agree.

KrisB said...

Wow! I very much agree with your powerful response! I hope you add it to the comments in both of the places where she posted the same piece. Go Becky! There are, indeed, millions of us parents who have children with EDs.

My D is also a long-term sufferer, and she has tried all kinds of treatments, recently some of them have been evidence-based. She has some relief from symptomatic behaviors, but the ED thoughts and beliefs are still raging So much more has to be done to find effective ways to help all of these sufferers. Blaming parents wastes time and gets in the way.

Stephanie said...

This is empowerment at it's finest. Go Becky! You are such an amazing and inspiring person and parent. Your advocacy work is changing the lives of so many families! I'm proud to know you!

Stephanie said...

This is empowerment at it's finest. Go Becky! You are such an amazing and inspiring person and parent. Your advocacy work is changing the lives of so many families! I'm proud to know you!