In Claire’s words …
Who inspires me: I am inspired by people who don’t give up. People who find a passion and work towards a goal to make a difference. I am also inspired by those who are prepared to stand up for others less fortunate than themselves.
Best advice: Never accept NO if you truly believe that what you are trying to achieve will improve the quality of life for others. Enjoy every day as if it were your last and fall in love with ‘community’ because that is what holds us all together.
Alarm bells sounded in Claire Middleton’s head when she noticed the weight start to fall from her two teenage daughters’ slender frames. Claire had fought a secret battle with bulimia herself – 10 years of binging, purging and self-hate. It wasn’t until she contracted ovarian cancer and faced her mortality that she found the courage to stop. Now here before her were her own gorgeous girls, refusing to join her at the dinner table, obsessed over food types, increasingly depressed, withdrawn and wasting away.
The nightmare decade that followed her daughters’ anorexia diagnoses sparked a fierce determination in Claire to help not only her own daughters but others. She knew people were dying, families left helpless in the face of eating disorders’ onslaught. Claire also realised there were scores of families who couldn’t afford proper help. Steeled by her own family’s experience, Claire founded The Butterfly Foundation and has gone on to change the way the public health system deals with this mental illness. While there’s a long way to go, Claire is strengthened by the realisation that the foundation has literally saved lives.
Steeled by her own family’s experience, Claire founded The Butterfly Foundation and has gone on to change the way the public health system deals with this mental illness.
Some one million Australians are thought to suffer from eating disorders, though only 25 per cent seek treatment. Eating disorders are also the leading cause of death among the mentally ill, not just through malnutrition but, more commonly, from suicide.
Contrary to popular belief, the disease cuts across genders, ages and ethnic types. “People think it’s a lifestyle choice among rich little white girls wanting to be more attractive,” Claire says. “But it cuts across age, ethnicity and gender – 25 percent of cases are boys and that number is increasing.”
Research has also revealed a genetic tendency towards eating disorders, with studies revealing a particular gene that may increase the chance of people contracting eating disorders – the same gene that produces bright, high achieving, anxious and hypersensitive personality traits. When people with this gene face some kind of trigger – a death, bullying, sexual abuse or teen angst – an eating disorder may result. “There’s a really complicated picture of how people fall into it,” Claire says. “So treatment has to be complicated too.”
The disease cuts across genders, ages and ethnic types.
Scramble for help
Back when Claire’s girls were at the peak of their illness, such treatment was virtually unavailable. While their family dinner times descended into battlegrounds, Claire’s struggle for help also intensified. “There’s so much stigma attached,” Claire says. “I felt I couldn’t tell my friends, there was little understanding or empathy and lots of blame. People thought that the child had brought it on themselves, or the parents were to blame.”
Increasingly frantic, Claire dragged her daughters from doctors to psychologists and psychiatrists only to discover that so called experts had no training or knowledge about treating eating disorders. All the while the daughters that she knew disappeared. “Eating disorders make you push people away,” Claire says. “It is difficult to maintain social relationships when you are plagued with anxiety and depression. Eating disorders give one an unbearable sense of being alone. Eating disorders are a vehicle for control over one’s life. Initially this control feels wonderful, however, as the eating disorder progresses you realise that you are in fact totally out of control.”
“as the eating disorder progresses you realise that you are in fact totally out of control.”
Claire felt helpless as she watched the disease invade her daughters’ bodies and steal their personalities away. Eating disorders cause not only malnutrition but also pain, organ failure, tooth decay and osteoporosis. “No one understood,” Claire says. “No one got it. It was just hideous. As a mum to know what was happening was devastating. Eating disorders are described as mental illnesses but they are much more than that. As a parent you feel helpless. People would tell me to go home and feed my daughters but talking about food and dieting with your loved one only makes the illness worse. You have to learn to talk about feelings and build trust with your loved one and let the health professionals step in and take control of the eating disorder. However, as a parent you must be a part of the treatment team – learning the skills of how to help eases your anxiety.”
Claire felt helpless as she watched the disease invade her daughters’ bodies and steal their personalities away.
Help and hope
Eventually Claire discovered the now-closed Footprints of Angels – the first place she encountered that understood the depth, intensity and length of treatment required to treat eating disorders. The team there comprised counsellors, dieticians, physicians and GPs, who sought not only to help the girls gain weight but also to rewire the neural pathways in their brains over time.
Here were medical professionals who treated the condition with love, not discipline, who realised the importance of building victims’ self-esteem, who involved the whole family in the care plan.
Claire’s girls remained at Footprints of Angels, which later became The Oak House, visiting for full days, every other day, for three years. Slowly, they not only gained weight but brightened as they gained the mental strength to overcome the disorder’s grip on their lives. But Claire says it took 10 years for the girls to completely recover. “Weight restoration is critical,” Claire says. “However, long-term treatment to shift the negative thoughts that accompany an eating disorder is essential.”
As Claire breathed out in relief at her daughters’ progress, she began to consider the thousands of other families locked in similar battles. “I was meeting families who didn’t have the money to get the treatment we were getting,” Claire says. “People were dying. I couldn’t stand it – something had to change.”
At first Claire set out to raise money to subsidise treatment for those who couldn’t afford it. But the enormity of the problem meant this could never be more than a band-aid solution. To make real difference, she’d need to change the way the public health system treated people with eating disorders.
So, in the early 2000s, Claire approached hospitals throughout New South Wales, Victoria and New Zealand. But only one hospital was interested in working with her foundation to improve the care for sufferers and carers – Monash, within Southern Health.
Claire met psychiatrist Dr Paul Lee who admitted that they could do a lot more to save the lives of young people with eating disorders. Together Claire and Paul worked to develop the first publically funded day program for young people. It is still in existence today as the Butterfly Southern Health Day Program. This program was modelled on the Footprints of Angels clinic but adapted to fit into the public health system. From here Claire sought to spread this new culture of eating disorder treatment Australia wide.
Making a difference
La Trobe University School of Psychology and Public Health professor Susan Paxton PhD remembers meeting Claire in the early days of the foundation. She entered Claire’s house and discovered a kitchen transformed into the foundation’s hub, with Butterfly Foundation material strewn over the kitchen table. “She started in a really small way with this really passionate group of volunteers and went on to build something so vibrant and so important right across the nation,” Susan says.
Susan credits The Butterfly Foundation with proving to the public health sectors the benefits of high-care day-patient facilities for people with eating disorders. “She was so passionate about improving access to care and quality of treatment and she really has achieved that,” Susan says. “She’s also really highlighted the important role of family carers in the treatment and care of people with eating disorders. And The Butterfly Foundation has done so much to raise public awareness of the serious nature of eating disorders – it’s not just a matter of attention seeking or vanity, it’s a serious mental illness that needs treatment.”
Such was Claire’s impact that she has gone on to win a string of honours, including the Victorian Honour Role of Women and the Order of Australia Medal. Among other responsibilities, she was also founding Director of Australians for Mental Health and is now executive producer of a web series ‘A Peace of Nourishment’ examining worldwide treatment for eating disorders.
Asked to reflect on her greatest achievement, Claire is quick to respond. “Getting my girls well,” she says. “They are now married and have their own children – I have 11 grandchildren, five girls and five boys. I hold my breath and hope eating disorders don’t come again. But, if it does, this time we’ll know what to do.”
Get involved …
Find out more about The Butterfly Foundation and support its work by visiting the website www.thebutterflyfoundation.org.au
Join Inspired Live’s fundraising lunch in Geraldton on February 9 in which body movement ambassador Kate Tonkin discusses why women need to start embracing themselves. Book your ticket here.