Mothers believe that we have the intuition to know when our children are in distress.
I really thought I would know the signs. I was bulimic as a young adult. No one called it that in the 70's. In fact, I'm not even sure that I even knew it had a name back then. No one knew that I, or so many others, suffered in silence. Not my mother, my college roommates, not even my best friends suspected. In that famous way that we promise ourselves never to repeat the mistakes of our parents when our children are borne, I had promised myself that it would never happen to my kids, I believed that if I promoted a love for food and cooking, If I avoided criticizing my children's appearance and if I promoted a healthy appreciation for ones body that I would prevent a repeat of history. I thought I was too smart, too savvy, too well read not to notice if my daughter or son were in trouble because of an eating disorder.
Steven had a good excuse. As a guy growing up in a household of brothers, Steven only knew what I had told him about eating disorders - which wasn't much. Together, we never saw Rachel's hunger or her pain. We never understood the meaning of her excuses for not eating. She was always petite as a child, so I thought she just remained so as a young adult.
But her friends understood. Thankfully, Rachel's best friends came forward and let us know how much we didn't know. Many of you, her dearest friends, are here today. I want to publicly acknowledge each of you for having the courage to step forward and save your best friends life. You risked Rachel's anger. You risked being told you didn't know what you were talking about. You risked your friendship - but you came forward anyway. And you came forward after only a few months of extreme eating behaviors - her not eating lunch, only eating low fat foods, living on diet cokes, turning away from her favorite foods, slowing diminishing the breadth of foods she would eat, scouring food labels, telling us she had already eaten and often complaining of stomach aches. You told us early enough so that Rachel got care quickly after the onset of the symptoms, making her recovery that much easier. As a family we had so much to learn about the disease.
First we learned that people really do die from anorexia, from bulimia, from binge eating. It's the single highest cause of death for females age 15-24 - yes higher than suicide, even higher than car accidents or binge drinking. We learned that eating disorders happen because of genetic predisposition... from societal influences on dieting and image... from the result of emotional pain or trauma. No, it is not just a disease of the rich or upper middle class, male or female. We learned that insurance has significant limits when it comes to mental health care. The irony of it all for those of you who don't know, Steven and I own an employee benefits consulting firm. This was suppose to be our area of expertise.
We had to learn what it meant to have limits on healthcare coverage. We had to learn the agony, the terror the long term financial implications those limits create. We didn't know that recovery takes place over weeks and months and years of continuous care and it's duration is a function of so many different variables. Other families knew even more than we did what the financial burden those limits create. $35,000 dollars a month for in-patient care. Thousands of dollars a week for intensive day treatment. And if your in out patient care only a typical week includes bi weekly visits to a therapist, a psychiatrist for medical checks, a nutritionist for weigh ins and food support, important weekly family therapy visits and maybe even doctors visits for the complications that so frequently come with eating disorders. Hundreds and hundreds of dollars, week after week, month after month. Second mortgages are taken out... savings drained... siblings are told that they can't attend college... vacations are canceled. Bankruptcy is considered or even executed. The stress of paying for care makes an already painful experience even more anguishing. Anguishing for the family, excruciating for the patient. Heart attack victims, diabetics and cancer survivors who have insurance don't go into bankruptcy to save their lives. No one should have to mortgage their future to save a life.
This is a real email that I received on Wednesday at our web site www.achancetoheal.org. It's not so unusual:
(Text of Email To Come)
So, here we are, A Chance to Heal inaugural benefit breakfast. The mantra and goal that helped save Rachel's life. Here we are because so many of you recognize that eating disorders have challenges on multiple levels.
The first challenge is the stigma and isolation associated with a mental health condition. Families denial the truth that their family member is sick. Schools and untrained medical practitioners do to. Shame unnecessarily surrounds this disorder.
The second being the challenge of money, inadequate insurance and poorly designed medical case management. Insurance Companies pretend that equal care for mental health conditions will cost everyone more money in the end.
And third, the challenge created by entrenched legislative and corporate polices that restrict access to care for mental health conditions. Lawmakers hide behind the lack of good statistics for making better public policy.
A Chance to Heal wants to change the culture that exists today. Money does make a difference. With your help, we are going to raise a lot of it. We have to. This fundraiser today, a very successful fundraiser, will help two people for two months. DonŐt get discouraged. We're not. A Chance to Heals medical advisory committee is working hard to make sure that the grants we will make will be thoughtful and strategic. With your help, A Chance to heal will raise $1 million dollars by 2008. As you can imagine, money is not the ultimate long-term solution. We have to change supposed parity laws regarding mental health care. Our businesses and corporations need to be taught the financial advantages of covering mental health care in full. For us to be effective a paradigm shift must be occur. All of us in this room must take a leading role in facilitating change. So many of you in this room are thought leaders. So many of you have political connections locally and nationally. So many of you make decisions about what medical plans to buy for your companies. And so many of you are the therapists and practitioners who treat eating disorders. Each one of you in this room can make choices that will improve the lives of the sufferers, their families, and their communities. We all need to say what Rachel said "this has to change". We need to do what her friends did when they stepped forward and said "you have to do something".
In a few minutes I am going to introduce you to someone who has been working for change for almost 30 years. Dr. Jean Kilbourne. But before Jean speaks to us, Jeff Siegel, is going to tell us what it's like from the male point of view, a perspective that we hear so little about.
Jeff Siegel.
Jean has been researching, reporting and lecturing on the effects of media images on our self perception. Her most recent book Can't Buy My Love: How Advertising Changes the Way we think and feel, won the distinguished publication award from the association for Women in Psychology in 2000. An expert on the impact of advertising, she is frequently interviewed for national television and radio shows and is cited in national publications such as the Wall Street Journal and Time Magazine.
Dr. Jean Kilbourne
