By Judy Krasna, F.E.A.S.T. Executive Director
I have to admit that I am not always on board with awareness events. I find that in some cases, they can be somewhat empty. As someone whose mother died of ALS, I found the “ice bucket challenge” from a few years ago to be somewhere between puzzling and offensive. I cannot make the connection between my experience of watching my mother suffer with such a cruel, horrible, debilitating illness and dumping a bucket of ice over people’s heads and watching them squeal. I am aware that there was some money raised for ALS research, and I appreciate that, but I believe that there could have been a more meaningful way to promote awareness, to educate people about ALS, and to advocate for more research. As a society, I think we have to set the bar higher.
My other issue with awareness is that it only goes so far. Colored ribbons to raise awareness are symbolic and meaningful, especially to people who have a personal stake in the cause. I understand why people wear them, and I greatly respect the sentiment, but I wish that these awareness symbols translated into more action. We need action to detect and cure diseases. We need action to correct social injustice. We need action to improve eating disorders treatment and to increase research funding.
That being said, I do stand behind World Eating Disorders Action Day, which will take place tomorrow, June 2. I’d like to tell you why.
F.E.A.S.T. is all about joining stakeholders together in a coalition-building model of advocacy work. I think that World Eating Disorders Action Day is a terrific example of how we can bring stakeholders together and discuss what needs to change. It’s an opportunity for us, the parent community, to share our voices of lived experience and to talk about what we feel would improve outcomes. We have a unique perspective, and we are critical stakeholders. As such, I appreciate the opportunity to participate in a day dedicated to shedding light on areas of improvement that are needed in eating disorders treatment. I welcome collaborating with other stakeholders; we are stronger together.
I used to think that some of the barriers to treatment that our family encountered were specific to Israel, where I live. I thought that the deficits in treatment that we experienced were also country specific. I imagined to myself that people living in bigger countries, better funded countries, more enlightened countries, did not have to face the same challenges as we did. However, the more I became connected with F.E.A.S.T., the more I realized that there are parents all over the world who had the same negative experiences in treatment as we did and whose children were held back from recovery by the same constraints, treatment mindsets, and flawed systems. They may be different flaws, but the systemic failures were identical, and they were causing immense damage to people with eating disorders and their families.
Barriers to accessing treatment, lack of equity in eating disorders treatment, the inability to receive evidence-based treatment, not addressing co-morbid conditions in eating disorders treatment, blaming and marginalizing parents in treatment, weight bias, and other inadequacies, shortfalls, and injustices may be ignored when they happen in one country; but when they happen on a global scale, and when this awareness is highlighted by World Eating Disorders Action Day, these issues gain legitimacy, credibility, and gravitas.
However, World Eating Disorders Action Day only takes us so far. The hard work of addressing the treatment and research deficits that are highlighted by World Eating Disorders Action Day, (and more importantly, correcting them), falls on all stakeholders from around the globe. It’s time to roll up our sleeves as a collective community and get to it.
As parents and caregivers, there are many ways to do this. We can keep telling our stories. The “Voices of Lived Experience” blog on our website enables both caregivers and people affected by eating disorders to share their insights and to make their voices heard. We can get involved with advocacy in our regions. We can build coalitions with other stakeholders in our area. We can keep sending the message that eating disorders are treatable illnesses, and that recovery is possible at any age and at any stage. This is a message that all stakeholders need to hear and internalize, because that hope drives all of us to keep on, even when it’s monumentally difficult. We can do presentations at our kids’ schools for the teachers, we can offer their athletic coach information about eating disorders, and we can raise awareness in a way that leads to early detection and intervention. Our lived experienced has put us all in a place where we can do some of this work.
F.E.A.S.T. is out there doing some of the heavy lifting. One of the ways that you can support World Eating Disorders Action Day is by supporting F.E.A.S.T. Together, let’s take this awareness day and translate it into the action that is needed to break down the barriers standing in the way of improved outcomes so that we can reduce suffering and promote the recovery of people with eating disorders all around the world.