Why bring up Isabelle Caro? Because you searched for her on Google, or you recognized her name and clicked. If you are the parent of a person with anorexia, I wanted you to find me.
In the storm of misconceptions and blaming around that news story, I'm worried for you, and I want you to find better information. When you read about Isabelle Caro's death from chronic anorexia, and her mother's recent suicide, you may be hearing ideas about eating disorders and parents and guilt that I heard, too, when my daughter was ill. These are the same stories and myths that were readily believed by the public and recycled by the media 10 years ago, 40 years ago, and longer. I wanted you to find me so you can hear things you won't get from those stories. Things few others are willing to say, and face savage criticism for saying.
When Caro was being displayed like a Bearded Woman on billboards, the public thought it knew what it was looking at: the far end of a societal mania for thinness, a victim brave enough to show her pain. I saw a mentally and medically ill person being used by everyone concerned.
When Caro explained her illness people listened as if she was a seer from a foreign land come to show us the truth.
In fact, Caro was probably like most people with this brain-based disorder: not self-aware or in control of her thoughts because the illness itself blocks that insight.
When Caro died of her disorder, one that often toys with its victims for a decade or two before finishing the job, people saw a tragic victim. In her mother's suicide they saw the retribution.
And I just worried about all the parents who would, learning that news and hearing the public outcry, be that much less able to do the hard work of parenting a gravely ill son or daughter.
You didn't cause your son or daughter's anorexia. Anorexia is a brain-based mental illness: a brain disorder. Some people are predisposed to this complex disorder, and the risk of developing one is 53 to 83 percent genetic. No one yet knows exactly what causes it, triggers it, or maintains it -- but we know it isn't the patient's fault, or the parents'.
This is not to say that you or I, or Marie Caro, are necessarily good parents. Your loved one's eating disorder diagnosis says nothing, really, about you. The parents of eating disorder patients aren't different -- better or worse -- from the general population except that we are ourselves more likely to have inherited that predisposition or have it in a close relative. We do need to take responsibility for our actions, and faults, but not more so because of the eating disorder.
If Isabelle Caro's mother did all the awful things that her daughter reported, she was surely a poor parent and caused Isabelle great damage. But it is also possible that her mother did none of those things, or they have been exaggerated. Just as anorexia can temporarily make one believe the smell of food has calories, so can anorexia cause severe cognitive and interpersonal distortions.
Whatever you did, or failed to do in the past, what you do now could be the difference between recovery and tragedy. Do not retreat in guilt or self-pity: you have an important and difficult job to do as your loved one's advocate and caregiver just as if they had a severe injury or disease. Secure the best possible care for your loved one and refuse to be marginalized or blamed, even by your loved one with the eating disorder. Take responsibility for what you have actually done, but don't take on special guilt for things just because of the diagnosis. Do not allow yourself to get used by the blame game, and speak up in defense of those who wrongly, tragically, are doing it to themselves.
Follow Laura Collins Lyster-Mensh on Twitter: www.twitter.com/feasttweets