Eating Disorders Coalition (EDC) Virtual Advocacy Day on May 17, 2022 - Malinda Ann Hill Shares Her Story on Capitol Hill

Today is our 51st birthday and I am grateful I had the opportunity to attend Eating Disorders Coalition (@EDCoalition) Virtual Advocacy Day (#EDCHillDay).

On Tuesday, May 17, I joined advocates from across the country who shared our experiences with eating disorders and asked Congress to support important legislation. For more information on how you can help, visit: http://eatingdisorderscoalition.org.

​Here is my story I shared:

My name is Malinda Ann Hill and I moved to Charlottesville after living in Philadelphia for over 20 years.

My identical twin was diagnosed with anorexia nervosa when we were 11 years old. Tomorrow, we turn 51. Forty years ago, eating disorders in children were rare and education of health care providers was limited. Our pediatrician ordered multiple tests because he did not suspect that my twin’s drastic weight loss was intentional. Fortunately, my twin recovered.

Unfortunately, my struggle with anorexia nervosa began when we were 15 and continues today. Over the past 35 years, there were times when I was so severely ill I was unable to function. There were also times when I was able to manage my symptoms, allowing me to earn my masters’ degree in marital and family therapy with a specialization in art therapy, pursue a meaningful career as bereavement coordinator at the Children’s Hospital of Philadelphia, raise my daughter on my own, and run marathons with my twin to support Alex's Lemonade Stand Foundation for Childhood Cancer.

Since I was unable to access the treatment I needed in my late teens and early twenties, I suffered devastating mental and physical consequences as a result of surviving decades with an eating disorder. Shortly after the pandemic began in 2020, my eating disorder spiraled out of control. My mental and physical health rapidly declined to the point that I was unable to work. I knew that I desperately needed help and I had to seek treatment as soon as possible. I feared the pandemic would trigger a mental health crisis and I was correct.

I took a medical leave of absence from work (FMLA) to participate in a virtual partial hospitalization program. Unfortunately, I had to discontinue the recommended treatment program because I had to return to work after 3 months. I did my best to manage my debilitating symptoms on my own but I was unable to function. I requested another medical leave of absence from work and I was re-admitted to a virtual partial hospitalization program. When my mental and physical health continued to deteriorate, I was admitted to an in-person partial hospitalization program in Charlottesville. Shortly thereafter, I was notified by mail that the hospital could no longer hold my position that I held for nearly 20 years while I was on medical leave. Subsequently, I lost my health insurance and access to the in-person partial hospitalization program because it would not accept Medicaid.

While I am grateful to have a team of health care providers who are compassionate, knowledgeable and aware of the complex mental and physical consequences of eating disorders, it has been impossible to access the level of eating disorder treatment I need through Medicaid.
Last year, I shared my story for the first time during EDC Virtual Advocacy Day. Although it was difficult for me to admit how much I continue to struggle, I felt empowered and hopeful after joining other advocates.

There have been many days when I have lost hope and I fear that I will continue to suffer or die as a result of an eating disorder. Even on my darkest days, I want to do all I can to help others and raise awareness. I am grateful for every opportunity to share my story to advocate for change.
I believe legislation to support education, research, prevention and early intervention is crucial so children, teens and adults will not have to suffer for decades like I have or die as a result of their eating disorders like far too many have.

I am asking for support of the Anna Westin Legacy Act and the Kids Online Safety Act so all children and adults suffering or those at-risk for eating disorders have access to the care and understanding they deserve.