by Laney Park, F.E.A.S.T. volunteer
We couldn’t afford to wait. In the fall of 2013, my daughter started to lose weight. She said that her “tummy hurt” when she ate and she began to eat less and less as the weeks went on. I knew something was wrong and brought her to the pediatrician who suggested bloodwork and tested for diabetes. The results were negative. When we came back, he ran more tests, then sent us to a gastroenterologist. She. in turn, ran more tests. Our daughter ate less, and I, listening to her pleas of stomach pain didn’t insist otherwise. More than 11 weeks after our first doctor’s visit, my daughter was hospitalized with a feeding tube, a very low heart rate, and, finally, a diagnosis.
My daughter couldn’t afford to wait for all of those tests. Better training for general mental health professionals would’ve empowered me, a social worker, to assess or seek an assessment for an eating disorder right away. Early detection would have empowered us, her parents, to take charge of her eating after she had just begun to lose weight, after she had just begun to withdraw from her friends, and after she had just begun to experience the compulsive thoughts that made eating more and more frightening for her 11-year-old mind. Better training for our pediatrician would’ve empowered him to refer her to be assessed for an eating disorder at the same time he ordered the first round of bloodwork. Better training for our gastroenterologist would have empowered her to refer my daughter to be assessed for an eating disorder at the same time as we ran more tests.
Once we knew we needed specialized help, we couldn’t afford to wait for the parent training that could help us to feed this very different child our daughter had become. A better run outpatient program at our local hospital would’ve understood what we were facing and known that we needed this. Our son couldn’t afford to wait for his sister to stop fighting back every day. His vulnerable teenage self didn’t know what to make of what was happening and didn’t know how to make it better.
But we did wait and my daughter got very sick before we knew what to do to start making her better. We got her to eat again even though the effort took everything I had and consumed our entire days. We waited until she was so sick that her healing took nine months of intensive in-home care, two out-of-state treatment centers, and 18 months of missing school. We waited and our son’s frustration and confusion turned to a deep depression that overshadowed his high school years. We waited until she was so sick that her care needs had a profound effect on every member of our family. If we had not been able to cover much of her care upfront, we would’ve waited longer waiting for insurance to cover it.
Still, my daughter is one of the lucky ones. Because we learned about family-based treatment, got advice from an incredible network of other parents and finally found capable providers, my daughter is now living the normal life of a 17-year-old. Today too many sufferers are still waiting for diagnosis, for properly trained providers, and for adequate care and support. The many who wait longer miss out on more than middle school. They miss out on living full lives in high school, college, young adulthood or worse. Eating disorders are the deadliest of mental illnesses; It’s been estimated that they take another life every 62 minutes.
Because I knew that we can’t afford to wait, I’ve worked to get together parents locally, to support parents online, to raise concerns with my local providers, and to lobby my lawmakers. There’s so much more that needs to be done—a public to educate, stigma to challenge, families to support, parents and professionals to train, research to be funded, effective treatment approaches that need to be replicated. Along the way, by sharing my story and by getting involved, I’ve become connected to and amazed by the energy of parents, people in recovery, siblings, and professionals whose lives have been affected and who won’t settle for waiting. If you or someone you love can’t afford to wait, I hope you’ll join us.
Laney Park is a school social worker and mom of two who lives in Takoma Park, MD, a town that borders on Washington, DC. She organizes parent support meetings, volunteers as a moderator for FEAST’s Facebook group and is part of the Experts by Experience Committee of the Academy for Eating Disorders.