The power of story-telling and why your story counts

The power of story-telling and why your story counts

Feeling misunderstood is one of the most difficult and emotionally painful aspects when experiencing an eating disorder. My parents and sister, after decades of witnessing behaviours driven by my illness, gave up trying to understand me.

Do I blame them?

No. I accept that they did not understand my illness. In fact, because I looked ‘normal’, and actually held down a job, they did not believe I had an illness. I was simply labelled as ‘the one with problems in the family’. If our family of origin doesn’t want to understand the realities of this illness – if they keep insinuating that our behaviours are selfish, weak, let’s face it, totally embarrassing and unacceptable to a family that wants to ‘keep up appearances’, tough decisions must be made for survival. For me, this involved creating a family of choice.

Richard Morton first described the illness now known as Anorexia Nervosa in Western literature in 1689. If Morton were able to re-appear to check on progress following this publication, he would likely be aghast at today’s loss of focus on the illness, at the distractions created by forces that feed the illness. This challenge is huge. Eating disorder illnesses run the risk of being over-run and lost in the whirl created by multi-national companies bent on encouraging and exploiting obsession with body image.

Get real to get the message out

What matters most — one real story or 100 pages of evidence-based data on eating disorders? Which carries the strongest take-home message? The real story, that’s what. Because we’re talking about lives. Real lives. Certainly, the addition of evidence-based research data will magnify the real story’s power to influence and educate. The two can work wonders, hand in hand.

Educating the community about eating disorders and inspiring hope among those with the illness has improved greatly thanks to the efforts of hard-working advocacy groups.

However, misconceptions remain. For instance, on the usefulness of publishing personal stories about eating disorders. I encountered the following questions in 2011, and my responses (italics) remain true today:

• • Am I alone in thinking that there are more media reports/autobiographical books/requests for speakers for and by people with experience of Anorexia Nervosa (AN) than any other mental or physical health problem? (Perhaps Cancer is an exception).

I don’t consider this question relevant or the assertion correct, but wish it were so, for it would mean we have ample opportunity to present the correct information on eating disorders (ED) to a largely ignorant and confused public. I believe the ED field has a responsibility to ensure the media is fed the right information.

• • Why are there fewer people volunteering to tell their tale of suffering from Bulimia Nervosa (BN) or Binge Eating Disorder (BED) (despite a greater prevalence)?

The demand for articles on BN and BED needs to be generated – again, by the ED field. The media won’t come looking for us. We must present them with the leads, the stories, the facts, the evidence-based research, and the right information. We need to present the media with a united front that has a sound foundation, built on evidence from both research and experience.

• • What is the potential for harm in the general community from these stories?

The potential for harm to vulnerable people can be avoided by eliminating weights, measurements, and details of ED behaviours. That said, enough information needs to be shared to enable a connection to take place between the person sharing the story, and the audience. The audience needs to be able to identify with the story. This is what will make the message memorable for them. When I ask myself ‘whose story do I remember most over the past 25 years in the media?’ It is always the real stories from real people. In particular I remember a series of one-hour documentaries by a mother and daughter sharing their story of recovery on prime time evening television. The presenter was empathic. At the time, in the 1990s, I was in the throes of recovering from my ED. I found the articles hopeful and inspiring. I found comfort in the public acknowledgment of the difficult AN illness – for I had struggled to have it acknowledged by my family of origin. Other stories that have had a huge impact include those of Laura Collins and Harriet Brown, discussing the recovery of their daughters from AN. Always, it is the REAL person – whether carer or sufferer – whose story makes the greatest impact.

• • Why is it that people with an ED, despite not listening to the advice or concerns of health professionals, close friends and families, overwhelmingly ‘enjoy’ hearing people talk about their experience with an eating disorder. Do they find it motivating? Does it aid recovery?

I strongly take exception to, am deeply insulted by this assertion. ‘Enjoy’? I have never heard anyone with an eating disorder say that they have ‘enjoyed’ listening to someone talk about their illness. From sufferers and carers alike, I hear the words ‘hope’ and ‘inspired’, because by listening to others you learn you are not alone. You learn which thoughts belong to the illness and not the real you. You learn that others have got through this, and you can, too.

In the past decade, especially, empirical evidence has been produced to support the efficacy and effectiveness of these stories. The only time harm would be a possibility would be when stories support the eating disorder behaviours; this risk can be avoided by not giving interviews until recovery has been achieved – in my opinion, people with an eating disorder are best not to provide interviews with the media until a minimum of two and preferably five years into recovery, and always with a support team. Carers, parents or partners may want to share their story earlier than this, and this is okay, so long as the person with the illness is not identified.

• • I have for a long time hypothesised that the telling of one’s story about AN may, for some people, be a way of holding on to the AN identity. But this is just a hypothesis, in the absence of any rigorous study.

I have yet to meet a person who ‘holds on to the Anorexia identity’ by talking about their experience. My experience is that AN does not like going public and kicks up an enormous fuss when it becomes aware that it is about to be exposed, when it is about to have bright light shed on it – this is because AN thrives in the darkness, it thrives by isolating its victims. It does not like the attention that goes with ‘going public’. It does not want to be found out.

I find people who share stories do so because they want to help others – they want their experience to help ease the suffering of others caught up in the ED nightmare – and also because story-telling helps make sense of what they have been through, and helps them re-pack those ED experiences into a manageable memory in the back of their brain somewhere, enabling them to move on with living in the moment.

Professors Daniel Le Grange, Ivan Eisler, and Janet Treasure are among the eating disorder researchers who speak highly of the benefit of sharing stories. The stories of survivors and carers including Carrie Arnold, Jenni Schaefer, Aimee Liu, Laura Collins, Harriet Brown, Shannon Cutts have been, and continue to be, a huge help and encouragement in both saving and regaining lives and relationships; I feel sure of this.

People listen to stories

Let me quote Ivan Eisler (October 2011):

‘People listen to stories… They sit up and listen. Because it is a real life story. And it is powerful because it shows to people who are struggling that there is hope, for a way out of this. That kind of message cannot be got across if you read a piece of research that shows that people who have been ill for five or 10 years get better. People need to be able to relate to the story. To tell someone, ‘hey, I’ve got a piece of research that shows … I can show graphs … I’ve graphs that show people can get better after 15 years, but if I show the graphs to people who have been ill for five years, it has no effect. They could not relate.’ The real story, like if they listen to one person describing their recovery, this is what will have an effect.’

What do you think?

Does the real story count? Write to june@junealexander.com