iPhone app iPad app Android phone app Android tablet app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Laura Collins Lyster-Mensh

GET UPDATES FROM Laura Collins Lyster-Mensh
 

The Hidden Tragedy of Isabelle Caro's Mother

Posted: 02/07/11 07:23 PM ET

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.

Find me. Find us: the parents of eating disorder patients who are sharing evidence-based information and not myths.

 
 
 

Follow Laura Collins Lyster-Mensh on Twitter: www.twitter.com/feasttweets

 
 
  • Comments
  • 7
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Recency  | 
Popularity
10:44 PM on 02/11/2011
For anyone who is who has a family member affected by an Eating Disorder, accurate, evidence-b­ased information is available online at www.feast-­ed.org and www.around­thedinnert­able.org.
In all my searching for information and support to help my daughter, who suffers from anorexia, these websites have provided the best support, information and knowledge available.
08:26 AM on 02/10/2011
Thank you Laura for directing those who read this blog, to a place where families are helping their children recover, even as adults. F.E.A.S.T. saved my daughter's life.

The myths of family causing this very serious brain disorder has harmed so many sufferers and families alike.
So, all these posts and websites that perpetuate that myth are very troublesome.

We were fortunate to find F.E.A.S.T. when my daughter was 22 and not able to recover from 11 years of battling anorexia.

It changed our lives, because we learned about the biology of anorexia and the symptoms of malnoursihment as well as finally having HOPE that we could support our daughter's recovery.
She is now 24 and for the first time in 13 years has HOPE that she will have a life without anorexia. She never would have had this hope had we not provided her the nourishment to get her brain functioning again.

My daughter in her malnourished state, could not see family as support because of the neurobiology of being malnourished. She now views me as the person in her life who has helped her the most - because I've given her the gift of life, and support for recovery.

I am a mental health clinician and feel very dissillusioned with the myths that are perpetuated by clinicans who don't understand this illness and the media and others who echo those myths.
02:47 AM on 02/09/2011
Thank you, Laura. Well said. It is all so sad and heartbreaking. For anyone who is affected by an eating disorder or who has a friend or family member affected, the most accurate, evidence-based information you can find online is at www.feast-ed.org and www.aroundthedinnertable.org. In all my research on this subject in order to benefit my daughter who suffers from anorexia, these websites have provided the best information in one place that I could find.
photo
Becky Henry
Bringing joy, peace and skills to caregivers of th
10:20 AM on 02/08/2011
Laura, Well SAID! I especially appreciate these comments: "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."
08:15 AM on 02/08/2011
Thank-you, Laura, for publicizing this important message. It helps me to think of an eating disorder as a form of OCD, in which the obsessions have to do with irrational ideas about weight gain/loss and body size, and the compulsions center around food restriction or bingeing and/or purging. Just as in OCD, there is a predisposition to this illness, an inability to cope with anxiety in healthy ways, that often is triggered by stressful life events. Just like with eating disorders, those with OCD need lots of support from their loved-ones to move through their fears and be able to behave normally, and find other ways to cope with anxiety.
I have found FEAST-ED.org and the aroundthedinnertable.org forum to be invaluable in helping me to understand eating disorders and to find the best ways to help my daughter, both on a day-to-day/meal-by-meal basis & choosing the best available professional help. Instead of blaming anyone, let's get to work implementing treatments that are being shown by scientific studies to work best to help ED sufferers. They are treatable and many of the parents on our forum have seen their children returned to full health. Yes, they still have that predisposition to manifest an ED and must be careful not to become malnourished in the future, but that is a small price to pay for a return to a normal life.
07:26 AM on 02/08/2011
I too, have found the FEAST site and Laura Collins. There has been so little continuity of care and knowledge that exists in the treatment community. A millieu of mixed messages that leave caregivers lost and frightened. Knowledge equals Power, the power to make decisions and feast is just the place to Go to find this knowledge and support for families. Lauras message reads clear. Anorexia Is a brain based disorder that requires treatment based on this very fact. Parents and care givers need very specific support and tools to Effectively cope with this illness.
06:52 AM on 02/08/2011
From the mother of a recovered 13 year old anorexic who did find you, Laura, F.E.A.S.T. and the Around the Dinner Table forum, I was deeply saddened by Isabelle Caro's death and her mother's subsequent suicide. Isabelle's was a needless death, as I don't believe that anorexia is a chronic condition, and her mother's suicide was a condemnation of society and its attitude to a misunderstood, lethal, biological brain disease.

This disease can be beaten. I stand testament to that. It takes a lot of hard work and commitment. By blaming parents, clinicians and other "experts" have caused needless pain to those who are able to help recovery (parents) and anguish and sometimes death, to those who are suffering, by taking away the support network, who are committed to helping their loved one recover. This diesase strikes all races, creeds and income levels and the revolving door policy of readmission and seperating the sufferer from their loving family has to stop.

Evidence based treatment is the way forward and I strongly urge any carer who is reading this to visit the Feast-ed website and to join us on the Around the Dinner Table to find hope, love and peer-to-peer advice, understanding and friendship, to enable and empower them help their loved ones recover. We are a world-wide 24 hour forum, peopled entirely by volunteers. We have some of the world most respected eating disorder clinicians as special advisers.

Charlotte Bevan, Secretary, Feast UK