I was told in 2002 to stop feeding my child. She was anorexic and her young body was failing, but I was told it wasn't my business and it wasn't about food.
They were wrong. They're still wrong. And they're still saying it.
But why should the public care? If you don't have a loved one with an eating disorder you may think you know all you need to know about things like anorexia and bulimia and it isn't your problem. But you need to know this: you are next.
The need for evidence-based treatment of all mental illnesses is urgent and the cost of business as usual can be counted in lives and money and the silent hell of people you know. There are effective treatments for depression and anxiety, bipolar disorder, schizophrenia and eating disorders and there are parents fighting to get these treatments for their loved ones in vain. We are all paying the price.
Eating disorders are brain disorders. This isn't opinion, it is fact. The head of the NIMH, Dr. Thomas Insel, says so, as do the leading experts. Eating disorders are biologically based and genetically transmitted. They are treatable, and yes, food plays a major role in recovery. But a parent seeking help for a loved one lost in anorexia or bulimia or a related illness isn't usually told these things. Parents are told to back off, read a book on "letting go," and prescribed an anti-depressant for their obvious distress. We are asked for insurance information, our own dieting history, and why we think our child has chosen to do this. But why? Modern researchers and research-based clinics now say that the food is medicine and parents need to deliver it. The Family-Based Maudsley approach shows the best results and the APA and our government health authorities acknowledge this.
So why was I told to back off? The same reason the parents of autistic and schizophrenic children were once blamed for those illnesses: wrongly, unfairly and at great cost. No one talks about Refrigerator Mothers or Schizophrenogenic Mothers any more but we're still doing routine "Parent-ectomies" on eating disorder patients. We see patients as victims and look for abusers. Parents accept the blame because guilt is what we do.
But I'm not doing guilt any more. I'm not doing shame or blame about this illness. Not blaming my child, not blaming the media, not blaming myself or her father or my own mother. My genes, well, that hand of cards had anorexia in it but also my daughter's curly hair and work ethic and artistic drive. I love this kid for her whole self, and admire the fact that she fought her anorexia and won when her brain was healed enough to take that on herself. And she did, she's fully recovered. Who does she blame for the illness that once threatened her life and estranged her from the world? Her genes. Who does she credit for her recovery? Herself, family, food, a good treatment team, and evidence-based treatment.
And that's why I wrote a book, why I blog, why I started a nonprofit for parents of eating disorder patients: because parents are still being told they have to step back when they need to step forward. Because parents aren't told about evidence-based treatment. We need a worldwide movement to tell parents and caregivers they don't need to slink off in a corner and write penitent checks to people who aren't keeping up with their field.
A few years ago I had a chance to interview Dr. Insel at NIMH on camera for a video I produced, called "Do Parents Cause Eating Disorders." I asked why eating disorders don't get the research and funding one would expect for an illness affecting at least 3% of the population. His answer was "parents." He's right: look at any powerful movement in healthcare and it is the patients and their parents who rose up and got it done. With child health, and mental health, it is parents who carry the pitchforks and the placards. I'm making it my business to foment revolutionary fervor in parents, not just of eating disorder patients but for all mental illnesses.
Revolutions used to start around the hearth, but I'll settle for the warming fires of the blogosphere.
Revolutionaries wanted: apply within.
Follow Laura Collins Lyster-Mensh on Twitter: www.twitter.com/LauraCollinsLM