National Eating Disorders Association

The Healing Power of Advocacy

Annie Seal

When my daughter became sick with a serious eating disorder eight years ago, I found few local resources and limited treatment options. Insurance denied my daughter treatment randomly and often. When we were denied coverage for treatment, I became outraged and she became sicker. I remember thinking, “Is this legal?” Sadly, I learned that while not exactly legal, enough loopholes existed in the system to make denial of treatment possible. Here we were dealing with the most serious, complex, and fatal of all mental illnesses, yet we were unable to get our daughter care. I’m sure this sounds familiar. So if this is universal, why does this unfairness persist and how do we make a difference?

Although I’ve seen improvement, generally speaking we are afraid to talk about eating disorders. The illness itself shames sufferers into submission. Talking about a child’s eating disorder is terrifying, and oftentimes our brainsick loved one asks us to keep the illness a secret – it’s part of being sick.  

While I understand the request for privacy, our silence perpetuates stigma and shame and allows insurance providers to get away with denying care. Our silence makes us powerless. Insurance companies profit from our distress and embarrassment. After all, who has the energy for another peer review? Who can manage to track all of the paperwork? Who has time to stay on hold for hours every day? The disease shakes us to our core, depletes us, limits our ability to react. Pure exhaustion and administrative roadblocks are how insurance companies win. 

We must fight the illness that is stealing our children and loved ones by passing legislation that ensures support at the state level. Good policy at the state level is important, as it can improve access to complete quality treatment and the ability to get care. The issue of care should no longer need to be handled on a case-by-case basis, which means everyone can focus on the real job of getting people well.  

Fury propelling me forward, eventually I found a legislator willing to file an insurance reform bill. For the next eight years, I worked to get eating disorders bills passed in Missouri. One bill resulted in insurance reform, another formed the Missouri Eating Disorder Council. A state Eating Disorders Council creates visibility within the Department of Mental Health and the governor’s office for the many issues surrounding eating disorders, such as the need to expand access to treatment in rural areas where private treatment is typically not available.

While working on legislation, I discovered that advocacy gave me power. It allowed me to break down myths and stigma and it helped me and my daughter to heal. I saw Missouri legislators moving from a sphere of ignorance to sharing testimonials about their personal, terrible experiences with eating disorders. In that moment, Missouri became a kinder, more compassionate general assembly, and I no longer felt the grip of eating disorders.

Today, the Missouri Eating Disorder Council continues to do important and necessary work. The insurance reform goes into effect in January 2017. Advocacy work is a powerful way to start the healing process and make a real difference with this illness. I recommend anyone who has suffered get involved and fight this fight for themselves and others.

Register for this webinar (Thursday, Dec 1, 2016 7:00 PM - 8:30 PM EST) to learn how to run a successful legislative advocacy campaign in your state to raise awareness about eating disorders.