It’s Time to Stop the Loss

By Karen Flello, Canada

June 2, 2016 will be the first ever World Eating Disorder Action Day.
Individuals and organizations from around the world will unite to bring awareness of these devastating mental illnesses to people who are unaware of their effect… but not to as many people as some might think.

Because for many, many people – perhaps 10% of the population, plus all of those who know and love them – this will not be news. These people already know about Eating Disorders. And every day is an “action day” for them.

The action of controlling/denying food intake. The action of not controlling food intake. The action of purging what has been taken in. The actions associated with exercising until one is unable to stand. The actions associated with feeling such crippling anxiety in the presence of food that one cannot even have it in the house. The actions of keeping secrets so profound, of being so fearful of judgment, of enduring such intolerable shame, that the sufferer destroys relationships and turns to isolation – which is what they feel they deserve.

And the actions of loved ones: watching… jumping to provide support… feeling helpless… arranging interventions… advocating… raging at the lack of available or affordable care… praying… and losing the one they love, little by little, every day.

I know about all of those actions. My sister, Michelle, lived with a complicated eating disorder profile for over 30 years… and as a communications director for a provincial health ministry, she had more opportunity than most to access treatment. But she didn’t; caught in the iron-grasp of her illness and its associated silence and shame, she died of renal failure at 49.

Before she died, Michelle decided to share her story. She did so knowing that there would be many who might benefit from it, even if it would just be the comfort of knowing that they were not alone, but she also did it to try to bring attention to the need for health-care policy and process decision makers to take this mental illness seriously and to address the need.

In all my years inside the health care system – what I learned is that every illness, every organ, has a pecking order. This is not a judgment – just a fact. Look where the majority of research dollars go and how the health care budget is divided. Cancer has more cache than syphilis – an extreme example and may I assure you I am not poo-pooing cancer research, I am simply saying that we prioritize our expenditures in certain ways – because there is always a judgment involved. And throwing money at people who you might rightly predict have a strong probability of relapse, compared to a “clean” investment where through a targeted screening program you could improve survival rates for say – prostate cancer – which would you choose? We are comfortable with the illnesses that we can manipulate with drugs, devices and procedures where parts are taken out or new parts put in. We are less enthusiastic with the big black hole that things like eating disorders represent. Nor do I suspect people fully appreciate the significant toll they take on the body and the associated costs, a toll which obviously grows more significant the longer they drag on.
From Bess, I Am A Blogger Now, May 30, 2013 http://bessiamabloggernow.blogspot.ca/.

The US-based National Eating Disorders Association estimates that there are 30 million people in the US alone suffering from eating disorders. With a mortality rate estimate of up to 10%, this means that as many as 3 million people will succumb to their disorders, most of them as a result of suicide or directly-related, catastrophic organ failure.

In Canada, where I live, the rate is assumed to be proportional to the population, compared to the US statistic. That would mean about one million people affected by eating disorders in Canada, and 100,000 lives lost. But we do not have a national strategy or even a policy in place collect the data – yet.

World Eating Disorder Action Day is about making sure that the people in the world who have the power to give support, to make change, to set research priorities, and to provide service for prevention and cure are made aware of the epidemic-scale need and begin to provide help. It is about understanding that Eating Disorders are not choices; they are deadly illnesses, they take lives, and they ARE TREATABLE. And it is about making it clear to those in power that we have an ethical and moral obligation to treat Eating Disorders. We ask that they act because it is the right thing to do.

About Michelle and Karen Flello
Michelle passed away on May 14, 2014; she died of organ (kidney) failure resulting from over three decades of living with bulimia and anorexia. In fall 2104, her family and friends founded “Michelle’s Voice: The Society for Eating Disorder Awareness and Education”. The first project of Michelle’s Voice was to publish a book entitled Shell: One Woman’s Final Year After a Lifelong Struggle with Anorexia and Bulimia. Shell was created out of a compilation of blog posts written by Michelle during her final year of life. Her hope, and Karen’s hope, was that her words should reach people, get a meaningful conversation going, and ensure that those who suffer, and their loved ones, would not feel alone. Proceeds from Shell will be put toward the good work of a number of organizations in Canada, including NIED – the National Initiative for Eating Disorders, based in Toronto.

Join Karen in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.