Tackling the stigma and stereotypes of eating disorders

SMART, talented and popular, Stephanie Allen had a bright future stretched out in front of her.

With a first class biology degree already to her name she had been offered the chance to study for a Masters at Edinburgh University. But she never lived to take up the opportunity. Stephanie died in 2007 at the age of just 22 - the victim of the anorexia that had stalked her since adolescence. Her tragic story is far from an isolated one.

According to the latest figures, published last year, more than 725,000 people in the UK are affected by eating disorders such as anorexia, bulimia and binge-eating disorder.

It’s an issue that has been thrust back into the headlines this week following comments made by Labour peer Joan Bakewell in which she claimed a rise in eating disorders among young people was a sign of “narcissism”. The 82-year-old broadcaster quickly apologised and said her “off-the-cuff” comments, given during an interview with the Sunday Times, were “not thought through” and she had not expected them to be published.

She faced criticism after saying that no-one in Syrian refugee camps had anorexia and suggesting the condition was a sign of the “over-indulgence of our society”.

It prompted a fierce backlash on social networking sites and in the media with the eating disorder charity Beat saying it was “alarmed” by her remarks, describing them as “inaccurate and unhelpful”. Beat’s chief executive, Andrew Radford, said: “Dismissing anorexia or other eating disorders as arising from personal vanity is not only incorrect, it also adds to the stigma and misunderstanding already commonly experienced by those affected and their families.”

Although Baroness Bakewell has said she is deeply sorry for any distress she may have caused, mental health experts and those diagnosed with the condition are concerned that her comments reflect a wider misunderstanding of eating disorders in society.

Chris Hood is Chief Executive Officer at the South Yorkshire Eating Disorder Association (SYEDA), a charity set up 20 years ago by a group of families who were affected by eating disorders and felt there was a lack of support. He says the comments were ill-conceived and do nothing to help tackle the stigma associated with what is a complex mental health condition. “The fact the comments were made by Joan Bakewell, who is normally so considered and progressive, adds to the shock because you feel she ought to know better,” he says.

There’s a concern this may perpetuate existing stereotypes about eating disorders. “I think they perpetuate the mistaken notion that this is all self-inflicted, that it’s a middle class and white female ailment caused by spending too much time in front of the mirror. This doesn’t help people with the condition, or their families, and it doesn’t help our understanding of what is a mental illness.”

He explains that losing weight is a symptom, rather than a trigger, of eating disorders. “In many cases people with eating disorders feel self-loathing, rather than a desire to attain an ideal image. They want to minimise themselves and hide away,” he says.

“We get a lot of people who come through our doors each day but there’s no one type of person, though there is a high correlation between anorexia and perfectionism and high achievers.”

There is no single cause at the root of this debilitating illness, although there’s a growing consensus among health professionals and researchers around the world that eating disorders are likely to be caused by a genetic predisposition, triggered by a traumatic event or experience.

It is estimated that around 46 per cent of anorexia patients make a full recovery, with another 20 per cent remaining chronically ill. “Anorexia has the highest mortality rate of any mental illness - between ten and twenty per cent of people with severe anorexia will go on to die prematurely as a result,” says Hood.

Stephanie Allen is among those who lost their battle. Her mother Jenny says she first noticed something was wrong when Stephanie returned home to Sheffield from university for Christmas in 2005.

“She was very thin and I could see that she had lost weight but she told me she was just eating fruit and vegetables. I thought ‘ok, it’s Christmas she will put on weight,’ and didn’t think any more about it because at the time I knew nothing about eating disorders,” says Jenny.

However, her son, who was at university with Stephanie in Manchester, told her that the situation was more serious and that he and her friends were worried about her. The family became increasingly concerned about Stephanie who realised herself that she had a problem. Her weight dropped and at one stage she was surviving on half an apple a day.

Jenny recalls one incident when she was back home and they were having a meal together. “She’d eaten a meal and we were so pleased and because it was the weekend we had a chocolate and she bit half of one and then just sat there looking at the other half and went into a panic attack.”

She says it’s hard to pinpoint what triggered her daughter’s illness, although she believes it started when she was a teenager. “It’s such a difficult illness to understand and as a family you don’t know if you should talk about food and clothes, and whether you should mollycoddle them or get angry.

“Eating orders take control over everything else. I remember Stephanie saying to me, ‘I just want to be normal like everybody else. I don’t want to be thin I want to be curvy again.’”

After receiving treatment her condition started to improve and despite her illness she completed her university studies with flying colours. In April 2007 she appeared to be on the road to recovery and embarked on a six-month round the world journey.

However, she suffered a relapse in Peru and died of organ failure in July that year just as her family were desperately trying to bring her back home. “After Stephanie died I read her journal and at one point she wrote, ‘I have to eat otherwise I will die.’ She was no fool, it was just the illness that overcame her in the end,” she says.

“She had a good group of friends and unlike some people with eating disorders who become a bit detached she was bubbly and caring. She was loved by so many people and she’s missed out on seeing her grandson and that’s the hardest thing, the fact that she’s not here with us.”

Today, Jenny is involved with SYEDA, where she is now a trustee, and helps other families get the support they need. “It’s a very complex illness and there are a lot of different causes. I used to think of it being like a cancer and once there it feeds on itself. That’s why it’s so important to be aware and to get early intervention before it becomes entrenched.”

The stats behind eating disorders

ACCORDING to the eating disorder charity Beat it’s estimated that more than 725,000 people in the UK are affected by eating disorders.

There is no single cause of eating disorders and the most prevalent are anorexia, bulimia and binge eating disorder (BED).

Although many eating disorders develop during adolescence they can occur at different times, there have been reported cases of anorexia in children as young as six and some reports of cases developing in women in their 70s.

Eating disorders can last for many years, but mental health experts say that the sooner someone gets the treatment they need, the more likely they are to make a full recovery.

For more information about eating disorders go to www.b-eat.co.uk