Eating disorders: The new strategy tackling the crippling illness

With hundreds of thousands of Australians still going untreated for eating disorders, a new national strategy is calling for major changes.

Shannon Calvert spent three decades struggling with severe and enduring anorexia nervosa, an eating disorder which has the highest death rate of any mental health illness.

“I had so many hopes and dreams as a young girl but I lost everything,” Shannon, 45, says.

“Several years ago, I was preparing for end of life because I couldn’t find the support I needed.

“Almost everyone had given up on me.

“I didn’t know where to go or what to do.”

Eventually Shannon managed to find a “very passionate group of health professionals who were consistent, supportive and helped me hold on to hope”.

While recovery is a continual process, she’s now committed to helping others, through improving the understanding and treatment of eating disorders.

How many Australians have an eating disorder?

Around a million Australians in any given year have an eating disorder, often co-existing with other mental health concerns such an anxiety or depression.

Of those, 58.9 per cent have other specified feeding and eating disorders, 43.2 per cent have binge eating disorder, 4.1 per cent have bulimia nervosa and 2.8 per cent have anorexia nervosa.

Women and girls are more likely to be affected and the average age for the onset of symptoms, in both sexes, is between the ages of 12 and 25.

For Shannon, it was even earlier.

Although officially diagnosed at age 13, she says her symptoms began when she was just 10 years old.

“My disorder didn’t develop overnight but I was very tall at that time and was constantly told ‘you’re a big girl’, so I started to diet and restrict my eating.

“My size felt like something I was meant to control,” she recalls.

Eating disorders surged during the Covid-19 pandemic

InsideOut Institute research found that during the first year of the pandemic, between May and October last year, of 1723 participants with lived experience of eating disorders, 88 per cent of people reported an increase in body image concerns, 74.1 per cent in food restriction and 66.2 per cent in binge eating.

The Butterfly Foundation reports a surge in demand to its National Helpline as well as to other treatment and support services.

Helpline manager Joyce Tam pointed to isolation, changes to food and exercise routines, uncertainty around restrictions, and lack of social connection as placing immense pressure on those living with eating disorders.

“This can often exacerbate symptoms, or even trigger disordered eating thinking and behaviours and is compounded by the increased challenges to accessing treatment, with both the public and private sectors struggling to meet demand,” Joyce says.

Many eating disorder sufferers are untreated

“Eating disorders are serious mental and physical illnesses, that have been heavily stigmatised and poorly invested in for too long — we need to work with government and funders to change that,” says Dr Sarah Maguire, Director of the InsideOut Institute at the University of Sydney, which has just launched the National Eating Disorder Strategy, pinpointing 10 top priorities for research.

Co-authored by patient and lived experience advocates, clinicians and researchers, it says improvements are desperately needed across early identification, treatment and prevention.

Dr Maguire says eating disorders are chronically under-recognised and often go untreated as a result, by both the general public and medical professionals.

“Seventy per cent of people with an eating disorder don’t get treatment, and of those that do, only 20 per cent receive evidence based treatment,” she says.

What is the treatment for eating disorders?

There is no ‘one size fits all’ approach to treating eating disorders and often a team of health professionals, including a psychologist, dietitian and GP, are involved.

Starting treatment as early as possible is important because there are long term health consequences for people with chronic eating disorders, Dr Maguire says.

“We know that early intervention can prevent severe illness and we know that many people can fully recover if they get the right therapy at the right time,” she says.

“But unless we discover the right treatments through research and translate them into the right therapies received at the right time, people don’t and won’t recover.”

Shannon, who used her ‘lived experience’ of eating disorders to contribute to the strategy, says that despite the trauma of her experience she is now in a “far better place”.

“After working on the strategy, I feel overwhelmed with hope,” Shannon says.

“If this can be implemented, and people can have individualised treatment, and medical professionals take accountability to be informed about what’s needed, people will recover and you won’t hear stories like mine anymore.

“You know, someone recently asked me where I see myself in five years’ and I said in reply: ‘For the first time, I see my life in five years’.

“Having hope is enough for me.”

If you, or anyone you know needs help with an eating disorder, the Butterfly Foundation Helpline is at 1800 334 673.

Written by Liz McGrath.