Today is World Eating Disorders Day. As the Executive Director of an eating disorders organization, I spend pretty much every day surrounded by the devastation of eating disorders. But for me, today is a little more personal.
I lost my daughter to an eating disorder and suicide almost two years ago. I have tried really hard not to play the “what if” game and go down the path of anger, blame, and regret. But sometimes, on days like this, it’s tough.
The bottom line is that I have no idea whether my daughter’s outcome would have been better had we taken a different path, had she been treated by different people, more competent people, especially in the beginning.
I am afraid that if I open the door to the anger, it will consume me whole. Anger is powerful and destructive. Anger will not help me heal. I don’t want to be an angry person; it will get in the way of my ability to live my best life under the circumstances. So, most days, I succeed in keeping that anger at bay. But not today.
I’m angry because in the 15 years since my daughter was diagnosed with anorexia, nothing has changed. Primary care physicians still haven’t been trained to assess patients for eating disorders and remain incapable of diagnosing them, even when parents tell them outright, “I think my child has an eating disorder.” I understand that they don’t learn much, if anything, about eating disorders in medical school, and that’s something that needs to be addressed, but have they heard of the internet? It’s a wonderful place where you can learn new things. I don’t mean to sound snarky (ok, maybe I do), but seriously, if I managed to educate myself about eating disorders, I’m sure they can do it too. There is nothing worse than medical providers who either know nothing about eating disorders or who have totally outdated knowledge which can be even more damaging.
I’m angry because very little progress has been made in the field of eating disorder treatment over the past 15 years. Eating disorders research is underfunded, I think primarily because eating disorders are misunderstood. What little research there is out there doesn’t always address improving treatment; too many research dollars (or NIS, pounds, yen, etc.) are wasted on research with no direct impact on patient care and without any targeted aim to improve outcomes and reduce suffering. I’m also angry because people with lived experience are not included in research, where their insight would be extremely valuable. What a waste that is.
I’m angry because 15 years after my daughter was diagnosed, evidence-based treatment is still largely ignored. This puzzles me greatly. If you were a treatment provider, and you cared about your patients, wouldn’t you want to use the treatment method with the highest proven efficacy?
I’m angry because the societal factors which can influence the development of an eating disorder are rampant. My daughter’s eating disorder started with an innocuous diet with a friend. I’m just going to put this out there: in my mind, dieting ultimately led to my daughter’s death. Food restriction is what leads people into the quicksand of eating disorders and yet it’s elevated into something virtuous in our seriously messed up society.
I’m angry because 15 years ago I received no education at all about my daughter’s illness, and things are no different today. Parents have no idea what to expect when their child develops an eating disorder; and more importantly, they have no idea how to support and help their child. If my child had diabetes, I would have been instructed about how to monitor her glucose, how to administer insulin, what warning signs to look for which would indicate that her health was in danger, etc. Why is it so different when your child has an eating disorder?
I’m angry because eating disorders are often comorbid with other conditions like depression, anxiety, and suicidality; and yet, eating disorder providers, even at the highest level, don’t treat comorbidity. Psychiatrists who treat depression and suicidal ideation don’t treat eating disorders. My daughter could either be treated for an eating disorder or she could be treated for depression/suicidal ideation but not for both simultaneously. This is baffling; it’s common for these conditions to be fully intertwined. Often, especially in cases of prolonged illness, depression and suicidality are part of an eating disorder. How is this either/or treatment situation acceptable?
I’m angry because my daughter received incompetent treatment in the beginning of her illness and by the time I felt educated and empowered enough to realize that how inappropriate and awful the treatment was, and to find an alternative, there was so much damage done. That breaks my heart. What exacerbates my pain is that our tragic story is bound to happen to another family, because the factors that contributed to my daughter’s death are still common.
I’m angry because no one ever gave me any information about suicide, even though suicidality is common in people with eating disorders and people with eating disorders are much more likely to die by suicide than people without eating disorders. It took me a long time to realize that my daughter was having suicidal thoughts. I struggled to wrap my head around it and understand how I could help her. Professional help by those treating her would have been appreciated.
I’m angry because my daughter died from an eating disorder; and maybe with earlier treatment, with different treatment, with better treatment, the outcome would have been different. Maybe it wouldn’t have been. I’ll never know for sure.