I thought I was just about as motivated as any scientist could be to crack the enigma of eating disorders. That is, until I attended “At Home With Eating Disorders,” a conference for families and carers in Brisbane, Australia. I have attended FEAST conferences before in the U.S. and came away with a similar feeling which can best be summed up by the title of a commentary I recently wrote for IJED, namely that we have to paddle faster and harder to figure out causes and improve treatments for these pernicious disorders. (see http://onlinelibrary.wiley.com/doi/10.1002/eat.22119/abstract )
I think every scientist in the field should attend a carers’ conference. There is quite simply nothing more powerful than sitting in an auditorium packed with parents, partners, sufferers, and survivors to remind us why we do what we do. Every study we design, every paper we write, every hypothesis we generate and test has the potential to transform lives. What we do is not just an academic exercise. It is not just about promotions, impact factor, publish or perish . . . it is about improving lives.
Several things struck me at the Brisbane conference. As I looked around the room and talked with parents, survivors, and sufferers it was again resoundingly clear that there is not just one stereotypical family type that is struck by eating disorders. Families from all socioeconomic levels, all regions, all races, and all sorts of parental personalities can be struck by eating disorders. I challenge any scientist to find a single feature that typifies all afflicted families! It just doesn’t exist. Families are desperate for help. Maybe it was a mother who lived three hours from the nearest specialist service who gave me a glimpse into how challenging it is to cobble together a treatment team in far rural areas and how important it is to have a GP who can do his or her best under the circumstances. Maybe it was the virtual mountain of questions submitted to the Meet the Experts panel, most of which we never had time to answer, all of which deserved more time and attention than we were able to give. Maybe it was the unprecedented number of parents talking about dealing with siblings who had eating disorders and listening to the herculean efforts they needed to undertake to deal with two children with eating disorders either sequentially or simultaneously. Maybe it was all of the emotion in the room, the tears, the pleas for services, the determination of the parents to make things right for their children and from partners to help their loved ones. Most likely it was all of these factors that once again rejuvenated my passion for eating disorders research.
Being the parent or partner of someone with an eating disorder can be a frighteningly isolating experience. At Home With Eating Disorders showed that even if you do live in rural Australia, you are not alone. In fact, virtual communities like FEAST’s Around the Dinner Table Forum http://www.aroundthedinnertable.org which is a moderated online forum for parents and caregivers of eating disorder patients, allow parents to post their questions and join conversations about the challenges of dealing with an eating disorder in the family.
Kudos to the organizing committee and The Butterfly Foundation, FEAST, Eating Disorders Outreach Service (EDOS) and Australia and New Zealand Academy for Eating Disorders (ANZAED) and special thanks Jeremy Freeman for allowing me to bring UCAN to Brisbane, and to June Alexander, survivor and advocate, for inspiring so many people around the world.