Sunday, February 22, 2015

USA: #IHadNoIdea not all #eatingdisorder treatment was #evidence-based

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!
Elena's Story 

My name is Elena and because we are still very much in the fight to bring my daughter J (15) from the depths of this hell called an eating disorder, this is an abbreviated version of our story...

Right now J is diagnosed OSFED (Other Specified Feeding or Eating Disorder) with co-morbids of anxiety and depression. Two years ago it started with bulimia and the co-morbids soon followed. We had no warning signs, just a journal found by her uncle.

I live in California's beautiful Central Coast and J's dad  lives in Las Vegas  where she attends school; we share custody. Both locations we were discover would let both us and J down in quality of care in treating eating disorders.

In the last two years it took J's first therapist 6 months to realize he was in over his head and say she needs someone who treats eating disorders (EDs) and knows medication; what we didn't know was that treating EDs and specializing in evidence-based treatment are not the same. 

It feels like we lost another year and a half seeing more therapists, teen psych unit stays for self-harm and two residential stays to try and beat this finally realizing at worst it strengthened ED at best it broke the cycle of behavior for maybe a few weeks, as ED is now entrenched and can manipulate most any therapist, dietician, or doctor. 

We finally found evidence-based care for J this year and hope it will turn things around, but that leads us to another problem, insurance.

It really hits you hard to hear your insurer (because we have coverage for J through both dad and stepdad) say things like " that's not covered, wrong diagnosis" or "maybe switch to PPO so more than urgent care covered out of state." With all the bills that have accumulated and us even splitting those copays, etc do they think we are choosing to struggle with HMO as it is or that J chose this illness? Do diabetics who are covered choose that?

The implied cycle of blame from health care providers and insurance is shocking. The lack of support in our communities for parents and those suffering like J (only 15 with no positive peer support) is heartbreaking.That those with the most power--the providers, insurance and lawmakers leave it to us the parents to try and change this system, all while we fight to save the life our child, is unimaginable.

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