On September 30 I will be in Washington, DC and will join others to March Against Eating Disorders. Honestly, I’m afraid to march. My Jenn is gone, and carrying a poster with her photo will be extremely difficult. I know there will be many mothers, fathers, siblings, and friends of others who have died. Seeing their grief will invariably make me cry for I understand it all too well. I will also completely understand the feeling of those mothers who have fought, or continue to fight, the battle with their child’s eating disorder. I have thought long and hard about why I would do this to myself. Frankly, staying home and watching NCIS would be far preferable.
Why will I march? The truth is I have this absolute belief that it is better to remember how Jenn lived rather than focus on her death. Her life was partly defined by a 10-year struggle with an eating disorder – a battle that she won. And she was so proud and willing to share her story in order to help others. Though she died four years after recovery, I cannot forget her triumph over her illness. But that’s not why I choose to march.
In 2000 I was diagnosed with colon cancer, and in 2013 I was diagnosed with breast cancer. What do I remember most about those ordeals? I remember the outpouring of support. There were cards and phone calls and visits and flowers and food. I felt strong and lifted up by so many caring, loving friends and family. Most of those people had no personal experience with cancer – no knowledge of the feeling when a doctor gives you the diagnosis, no knowledge of the terror of having major surgery to remove body parts, no knowledge of chemotherapy and its effects. But they knew that I (and my family) would need their thoughts, prayers, and gestures of support.
Lately I have begun to contrast my experience to Jenn’s when she left for residential treatment for her eating disorder. She said, sadly, that only two people called – her parents and her boyfriend. No cards, no flowers, no phone calls, no visits before or after. With one exception, no tangible support for her. The one wonderful exception was a gesture by a group of women from our church. They gave her a prayer shawl and told her to think of them hugging her whenever she wore it. She was so touched by that lone gesture. And she used that prayer shawl throughout her recovery.
During those rough weeks, most of Jenn’s support was from those she had met online in an eating disorder support group. The people who knew her struggle were there to encourage her.
Our families and friends are incredibly caring and thoughtful people. We could not have survived Jenn’s death without their love. And so I wonder why there was a lack of support for Jenn (and us) while she was in treatment and recovering. It’s clear to me now that there was so much the people in our lives didn’t know. And, given society’s view of eating disorders, how could they have known?
They did not know that eating disorders have the highest mortality rate of any mental illness.
They did not know that the eating disorder mortality rate, while far less than that of my colon cancer, is twice as high as that of my breast cancer.
They did not know that there is a genetic link to eating disorders. It is not a choice; it is not a fad; it isn’t the fault of the parents; and it isn’t something “you grow out of.” They did not know it’s a biologically based mental illness.
They did not know that when Jenn checked herself into Friends mental hospital, she had the bone density of an 80 year old woman; she suffered from chronic bladder and kidney infections; she weighed less than when first diagnosed in junior high: she was close to death.
They did not know of the terrible struggle parents fight with the unknown entity called ED that has taken a child’s brain.
They did not know that the months after treatment are difficult and require strength beyond any I needed when facing cancer.
People would never consider driving an alcoholic to a bar after leaving treatment. But, when someone with an eating disorder leaves treatment, they have to plan to eat – three meals and two snacks a day. Every sufferer has to face what was their biggest fear. He or she has to ignore the voice in their head shouting a warning of fat. Sufferers have to make way in a society with daily pressures to follow some new diet and a media blitz of unrealistic body images.
We have incredibly wonderful people in our lives. If they had known these things, Jenn would not have felt alone. No parent or sufferer should feel alone or embarrassed because the world doesn’t know the truth about eating disorders.
That’s why I’ll march.
