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. Here is my story that I shared on Capitol Hill yesterday. For more information on how you can help, visit: http://eatingdisorderscoalition.org.
My name is Malinda Ann Hill and I recently moved to Charlottesville, VA after living in Philadelphia for over 20 years.
My identical twin was diagnosed with anorexia nervosa when we were only 11 years old. Tomorrow, we turn 51. Forty years ago, eating disorders in children were extremely rare and education of health care providers was nonexistent. Our pediatrician ordered every test imaginable because he had no training on eating disorders and did not recognize that my twin’s drastic weight loss was intentional. Fortunately, my twin recovered.
Unfortunately, my battle with anorexia nervosa began when we were 15 and my struggle continues today. Over the past 35 years, there were times when I was severely ill and 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 the 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 and care for my daughter. 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.
After taking 3 months of medical leave of absence from work to participate in a virtual partial hospitalization program, I had to return to work too soon because I could not afford to continue treatment even with health insurance. I did my best to manage my debilitating symptoms on my own but after several months my mental and physical health rapidly deteriorated again so I was forced to take another medical leave of absence from work. Several months after returning to treatment, I was notified that the hospital could no longer hold my position while I was on medical leave so I lost my job of nearly 20 years. Subsequently, I lost my health insurance and access to the in-person partial hospitalization program I was attending because it wouldn’t accept Medicaid.
Over the past 6 months, it has been impossible to access the level of eating disorder treatment I need through Medicaid. I have been able to seek help through multiple medical providers because I have been suffering severe physical consequences as a result of my eating disorder. I am grateful to have a team of medical providers who are compassionate, knowledgeable and aware of the complex mental and physical consequences of eating disorders.
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 was struggling, I felt empowered and hopeful after joining other advocates. With all the obstacles I have encountered over the past year, there have been far too many days when I have lost all hope and fear that I will be one of too many who 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 who are at risk or suffering like me. I am grateful for every opportunity to share my story to raise awareness and support.
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. Please co-sponsor and support 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.