By Laura Collins Lyster-Mensh, USA
I’ve been an eating disorder activist for nearly 15 years now. I’ve seen a lot of change. I’ve seen a great deal of pain, but also such encouraging improvement. When I started I was both naïve and angry. Now, all these years on, I am weary and still angry. You see, 15 years ago many of us had a clear vision of what needed to change so that families like our own could successfully face the very serious diagnosis of an eating disorder in a loved one. These were not impossible changes, nor were they particularly complex, and while controversial at the time have stood the test of time in their importance and grounding in good science.
I’m sorry to say that those things have not happened. There are, now, a tiny percentage of families affected by eating disorders who will have access to the simple advances we asked for, but those instances are so rare as to be simply proof of concept, not real change. For real change it would have to be the exception NOT to get the following.
Evidence-based treatment planning
Normalize nutrition and eating behaviors
Blame no one: not the family and, most important, not the patient
15 years ago it was considered heresy to even say some of these simple things, but what has changed is that it is now merely grumbled about by those still skeptical in the eating disorder treatment world. We can say these things without fear of much push-back now, but that doesn’t matter if those who don’t even get a chance to know these concepts exist don’t see changes in their actual care.
The truth is that while a few of the best treatment facilities offer much of the above most do not:
Access to eating disorder specialty treatment is mostly limited to upper class patients in the US and late in the course of severe illness elsewhere
Specialist eating disorder care outside of a handful of wealthy countries barely exists
Specialist eating disorder care is rarely evidence-based
Male patients are least likely to get care
Patients who are not currently visibly and dramatically underweight rarely get specialist care
Why is eating disorder care so rare, so rarely aligned with the known science, despite being well-known to affect up to 5% of the population? You may not like my answer, but after a decade and a half of listening, learning, and working for change I’ve got to say that the problem is us.
The eating disorders advocacy world has not done what we need to do to bring change. To do so we would need to achieve some goals we fear doing.
- Recognize our power as a community
- Establish consensus on basic principles
- Stand up for those principles even within the community
- Refuse to be divided
There is a generation of eating disorder sufferers yet unborn. They deserve to live in a world that recognizes, acts, and supports them using all the science and compassion we have. Our egos and interests and friendships do not matter. Our history of being ignored, marginalized, blamed, or mistreated do not matter. Our particular connection to eating disorders, individual diagnosis, country, gender, economic status, country of origin: none of these matter as much as gaining credibility and taking action together for our common cause. Eating disorders are treatable brain disorders and lives are needlessly lost or destroyed.
World Eating Disorders Action Day on June 2, 2016 is the first such effort to do what I truly believe will mean a very different course for those future sufferers, bring us together as a global community.
It won’t achieve all the goals I cited by June 3, but the truth is that just creating and achieving this collaboration represents genuine progress. With a day where we refuse to be divided and we recognize our collective power we can begin the conversation on principles, and that means “the world” to me.
Laura Collins Lyster-Mensh is an American writer and parent activist. Her journey as an advocate began with her book, Eating With Your Anorexic in 2004, and culminated in being part of founding two eating disorders charities: F.E.A.S.T. and Charlotte’s Helix.
Join Laura 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.