Waging war against a deadly disorder

David Epston

David Epston is fighting what he calls a "culture war" against anorexia and bulimia. It's a guerrilla engagement in which the soldiers are known as "insiders" or "the League".

An Army? "More like a resistance movement," says Epston. And you're the general? "No, I'm the archivist - the person who went around collecting and exchanging stories. I have no desire to lead anything."

Epston's modesty belies his dedication. He's been combating anorexia for almost 20 years with a unique form of "narrative therapy" which personifies the eating disorder as a malevolent external force.

It's an arena in which Epston frequently finds himself talking to young women at death's door - skeletally thin, attached to drips and barely able to walk.

Anti-anorexia/bulimia ("anti-a/b") therapy has been adopted by two hospitals in North America and is attracting interest around the world.

Epston regularly travels overseas to teach and conduct workshops in the United States, Canada and Britain, and this October will be giving the plenary address at the Australian and New Zealand Academy of Eating Disorders conference in Adelaide.

Victoria, an insider who has battled anorexia since she was 13, says Epston was one of the first people "to recognise anorexia as the enemy and make the initial battle cry". He's also credited with creating "a language of resistance" - anti-anorexia.

So it really is a war? "Absolutely," says Victoria. "There are two sides - anorexia and death versus anti-anorexia and life."

Epston has worked with about 300 people like Victoria. "I've had many sleepless nights. I've never lost anybody, but it's a miracle of good luck more than anything else."

We meet at the Family Therapy Centre in Auckland's Westmere in the discreet private practice rooms Epston shares with colleagues.

From Canada, Epston emigrated here in 1964, trained as a family therapist in Britain in the late 1970s and worked in Auckland with the Leslie Centre before setting up his own practice in the mid-80s.

The interview is long, intense and tangential, with Epston frequently darting off to get emails and other insider writings to read aloud.

He began developing narrative therapy, which involves listening to and "re-authoring" the stories of people's lives, in the early 80s in conjunction with another therapist, Michael White. It was White, through his work at an Adelaide children's hospital, who got Epston involved in the anorexia field.

"I stumbled into something. The only analogy I have is how people stumbled into concentration camps and they had to do something about it. What I found haunted me."

Epston describes what he's created - "the means to speak against anorexia/bulimia" - as an "anti-language", designed to subvert the logic, rationale and moralities of the "over-language" we use. If this sounds complicated, and maybe a little too close to the fringe, not to mention overtly political, that's because it is.

Epston maintains the radical approach is necessary because anorexia is essentially an outrageous and deadly deception that has silently infiltrated many walks of life, including most hospitals that treat its victims.

Many insiders describe hospitals as "concentration camps".

Epston's most recent war effort, with colleagues Richard Maisel and Ali Borden, is Biting the Hand that Starves You: Inspiring Resistance to Anorexia/Bulimia - a book that was eight years in the making. Epston describes the work as co-research.

"There's not a word written there that hasn't been through the minds of hundreds of people. I contributed to it undoubtedly, but most of the documents came from someone and I gave them to someone else to see how it resonates with them."

The book, conceived as a text for professionals working in the field, evolved to include the wider readership of insiders and their families, partners and friends. The insiders' stories, Epston says, are the key.

"They tell the professionals what is happening here. They are teaching them from their suffering."

Epston is concerned not just with the plight of young women in the grip of anorexia, but also their representation of a wider cultural issue.

Between 0.5 to 3.7 per cent of females suffer from anorexia nervosa in their lifetime, with a mortality rate about 12 times higher than the annual death rate due to all causes of death among females ages 15-24, according to American statistics.

"I'm concerned that these are 'canaries in the mines' [an image Epston attributes to Helen Gremillion, professor of gender studies at Indiana University]. They are the sensitives. They are the ones that first perish in this world. They perish to warn us."

He says it's essential for me to talk (by email) to some of the insiders. I ask them what happens when Epston begins therapy by addressing anorexia as a thing - an outside being, often personified.

For example: "Can I just ask you why you think it is that anorexia tricks people into going to their death thinking they're feeling fine? ... This is a lethal trick. How do you trick a person into their own murder?"

"Megan", an insider, describes the conventional way of talking about anorexia and its effects. "When anorexia is perceived as part of me, then it feels impossibly encompassing, impossible to free myself from and I feel hopeless, bad, all the traits of anorexia - yet at the same time I struggle to see some of the effects anorexia is having on my life and what it is doing."

The anti-anorexia view is markedly different. "When anorexia is seen where it should be, as some external and evil entity, and when I began to occasionally consider it and talk of it as such, then hope began.

"I could begin to see the influence of anorexia as separate to me and consider where anorexia was finding its strength and advocates in my life experience and society around me."

Separating the problem from the person is the central tenet of narrative therapy - turning conventional therapy on its head. Instead of anorexia being something that belongs and resides inside, it is externalised as something that exists in our culture.

The result is a defiant, uncompromising stance against anorexia so when, for example, Epston talks about an insider's battle he will say baldly: "Anorexia tried to execute her on 14 occasions."

Epston says that having problems located externally rather than within people has a moral and political purpose.

In this sense anorexia is embedded "social suffering", whereby people discipline, punish and even torture themselves to meet ideal measures of health, fitness and beauty.

"Chloe", another insider, explains: "Anorexia is almost always portrayed as the result of an individual pathology (be it biological or psychological) while the socio-cultural context in which it occurs - indeed, which provides the soil in which it takes root and thrives - is completely overlooked (apart from the superficial acknowledgments of the impact of Western beauty ideals)."

Epston says anorexia has "a mastery of the language we inhabit" which is why it is so difficult to fight. Health professionals can be the worst offenders.

"They perform towards these young women like anorexia does. They speak the same language. They pathologise them. They tell them they are flawed."

He tells of one woman who decided to become the "best anorexic" ever for the doctors.

Megan outlines the collusion. "Often when people start talking and thinking about anorexia they start talking numbers: body weight, size, hours of exercise ... how sick they have been, how often they have needed help. All this sets up anorexia as quite a competitive achievement - like saying, 'Look what this woman has succeeded in doing in disciplining herself to get this thin'."

Biting the Hand talks about the seductive voice of anorexia - a voice that can exploit hopes and dreams and promote blame and guilt.

Chloe gives an example of the voice and its manipulations. "How dare my body begin to demand food after only one day of abstinence. By consistently feeding my body I have allowed it to take over - to become greedy ... I am furious - how have I allowed my body to become so undisciplined, so unruly?

"What if I continue on this path ... will I become a slave to my body, subject to its every whim?"

Epston says anorexia victims talk about being trapped - about being in a maze. He says it's like a totalitarian power in the hold it has over people.

"You can't escape [anorexia] within its own framework. I had to find a way to counter it. For all those years I'd been speaking about anorexia, I didn't know you could, or should, speak against it." Or to it? "Yes, but not in a loving way. You're vying for reality. This is a rivalry for meaning that is life or death."

Narrative anti-anorexia therapy is not used in New Zealand hospitals, but has been adopted by the Eating Disorders Service at St Paul's Hospital in British Columbia, and by the Eating Disorders Institute at the Methodist Hospital in Minneapolis. It is also taught at Unitec and Waikato University.

In his regular travels to teach overseas Epston sees encouraging signs that the therapy is beginning to be more widely accepted.

Meanwhile, the League is a growing community which shares its stories about fighting anorexia on the Archive of Resistance website. And Epston is working with some of the insiders on another book - a first-person narrative by them.

"In the end all I have is the voice of these women and I had to put it in a book form. I hope that it will inspire people. It's sort of my life's work really."

* Biting the Hand that Starves You: Inspiring Resistance to Anorexia/Bulimia by Richard Maisel, David Epston and Ali Borden (available here from Anti-Anorexia).


The seductive voice of anorexia/bulimia

The following was written by Elizabeth, a 17-year-old girl, shortly after beginning therapy. She titled it, My New Friend

"I made a new friend this year. Confident, strong, in control, my friend understands me as no one else does. His black eyes watch over me as he breathes softly in my ear, whispering secrets about myself. He tells me who I am. He tells me who I should be. Silently and without fear, he gently takes my hand and leads me to the places where he knows I should be going ... He is not just a friend but something more. A guide, a counsellor, a teacher, a coach. Each morning he wakes up early, dictates our plans for the day. If I do what he says, then I am rewarded. I get to sit down, or drink a glass of water. I cannot eat. Only he can. He eats at my body, my heart, my mind. He eats at my strength, my energy, my soul. He eats at the bonds that connect me to my family and friends. And even then, he is not full. My friend is always hungry. Licking his lips in satisfaction, he eats my smile for dessert."

- Edited extract from Biting the Hand that Starves You