By Judy Krasna, F.E.A.S.T. Board Member and Volunteer
I am not a numbers person; math has never been my thing. Spreadsheets with columns of numbers make my eyes glaze over. Research papers with graphs and charts make my head spin. I have my strong points, but anything that has to do with numbers is not one of them.
When “Eating Disorders By The Numbers” was released by F.E.A.S.T. and Millie Plotkin, MLS, in August, I gave it a cursory glance. I greatly respect Millie Plotkin, the informationist who put it together, and I trust her. But as someone who has trouble relating to numbers, I didn’t realize how significant this work is, how relevant this work is, until I gave it a second glance. I would like to encourage all parents to take a long, sobering look at these numbers.
As a parent advocate, I want to be able to direct research and to shape treatment in a way that improves outcomes and reduces suffering. I can only do this effectively if I am armed with the right data. That data comes from numbers. So, despite my ineptitude, I do need to wrap my head around some of these numbers, because they give me essential insight and information.
As parents, much of what we know about eating disorders is based on our sample size of 1. The conclusions that we draw and the convictions that we have are strongly tied to the illness of our own child. This doesn’t necessarily mean that we are wrong, it just means that we are not seeing the big picture. “Eating Disorders By The Numbers” shows that big picture that we need for context.
As the mother of someone who had restrictive anorexia, and as a consumer of media that depicts people with eating disorders as emaciated and skeletal, I assumed that most people with eating disorders are underweight. WRONG. According to “Eating Disorders By The Numbers,” less than 6% of people with eating disorders are diagnosed as underweight. Less than 6%! Are you surprised; because I was shocked, and I’ve been working in eating disorders advocacy for a long time. This information is critical in making sure that we are not missing diagnoses of people with eating disorders who are not underweight. There is an assumption made by parents (and all too often by providers as well) that if a person’s weight is in the normal or high range, then he/she can’t possibly have an eating disorder, which leads to delayed intervention. This delay in starting treatment can negatively impact recovery, and it definitely increases suffering.
The heritability risk of developing an eating disorder is between 28-74%. This is crucial information. We know that eating disorders have a genetic component and that they run in families. This is not just a number for us parents, it is a warning bell. We need to keep an eye on the siblings of a child with an eating disorder. Someone who had an eating disorder is more likely to have a child with an eating disorder. This needs to be on our radar.
About 26% of people with eating disorders attempt suicide. We have to look at this as more than a number, we have to use this as our battle cry to institute more suicidality training for clinicians who work in the eating disorders field. Many of these clinicians do not know how to properly identify, assess, manage, and treat suicidality. With a 26% rate of attempted suicide in the eating disorders population, this is flat out unacceptable.
As parents, we also need to be aware of the rate of suicidality in eating disorders so that we can make sure that we have the necessary skills to try and keep our children safe.
While it’s true that I tend to avoid numbers, this is where I make an exception, because these are not just numbers. These statistics represent our children; and as such, no one has a stronger vested interest in these numbers than we do. Let’s get these numbers out there. And more importantly, let’s make sure that these numbers translate into action, because they can’t be the status quo, and we cannot accept them as such. As parents, we should use these numbers as our call to arms in urging the research and treatment fields to find ways to please do better; so that in time, these numbers will fall and more of our children will recover.