I am an admirer of your work and one of a collective of Monkee-like parents who have children just like you; wired differently than “normal.” You characterize it as “born with an extra dose of sensitivity to life’s own brutality and my own nakedness.” We know that what you are referring to is a complex interplay of genetics, biology, brain wiring, temperament and psychosocial influence.
Our Monkee community have all had/have/lost children with eating disorders.
We've had some tough losses lately and I am hoping you will let me channel my grief into EDucating your readers about eating disorders via your blog. People are dying at the rate of 23 per day of treatable illnesses because the causes and treatment of eating disorders are woefully misunderstood in popular culture, society as a whole and even by most of the medical establishment.
What do we need people to know? My elevator speech is this: Eating disorders are serious genetic, biological, brain-based illnesses with a psychosocial component that seems to be tied to temperament. An eating disorder is triggered by a period of negative energy balance that may or may not result in weight loss. Many eating disorders begin with a diet and many do not—a stomach bug, surgery, wisdom teeth removal, training for a race, etc. are all common triggers. Eating disorders are not disorders of choice, vanity or family dysfunction. Eating disorders occur across gender, ethnic and socioeconomic lines, in people of all ages, and appear to have been present in all cultures and throughout history. While co-morbid conditions frequently exist that does not make them causal. Eating disorders are treatable with early, aggressive intervention.
The good news is an explosion of knowledge in the field in the last 10 years is providing incredible hope for early, successful, evidence-based treatment of eating disorders. The bad news is that most people—and I include physicians, nurses and mental health clinicians in this—have no idea about the advances or even the ability to diagnose an eating disorder.
My Monkees are trying to change our corner of the world. We do this by first and foremost supporting and educating parents so they can save the lives of their children—even if they have no access to decent treatment. We mentor parents of those recently diagnosed. We weep with those who have lost children. We strategize with those whose adult children are refusing treatment. We share experiences on 504 plans and treatment centers and co-morbid conditions.
We travel to conferences and we soak up information to share. We help parents locate treatment and challenge insurers and national health systems who don’t consider treatment necessary unless the patient is at a metaphorical Stage 4. We lobby to create change legislatively. We celebrate those who recover.
We work tirelessly and endlessly to raise the alarm that this can and does happen in ALL families—and when it happens in yours you will need the knowledge and resources to fight to save your child’s life.
My personal involvement in all this—the time, energy and thousands of dollars spent annually (thanks to a very supportive spouse who is also a fantastic father) is because things went right with our daughter and I want everyone to have the same opportunity.
Three years ago our pediatrician wasted very little time ruling out other causes for Kinsey's sudden inability to eat many foods. I was able to find information on the internet that told me a huge red flag was a newfound interest in baking and not eating the baked goods. My kitchen looked like the set of Cake Wars and I couldn’t get away from Guy Fieri. Who knew?
On our one emergency room visit the doctor was quite vehement and straightforward in telling me she had anorexia and had I not already had an intake meeting set, he would have convinced me to do so.
We had immediate access to treatment at the Internationally-renowned UCSD Eating Disorder Treatment Center. The final piece was our insurer, Aetna, signing a single-case agreement that limited our annual contribution to $5,000.
Today my daughter is studying at University of New South Wales in Sydney, Australia. She has been in strong recovery for 21 months and continues to follow the advice of a psychiatrist and have regular medical monitoring. Having been through relapse she is strong and sure of what she needs to do to keep living the wonderful life she has built for herself. She is living the life she is meant to with the confidence that results from the hard work of good treatment. She is a Recovery Warrior in work she has done with writing and speaking to parents.
But more important than all of that is that her smile lights up her face and her eyes sparkle with a zest for life.
Too many lives are lost or stunted; it doesn’t have to be that way. Please help us spread the word, Monkee-style.
Jenn @ Juggling Life
aka JD Ouellette
(also several other names [SMH, long story] but those should suffice).