Illness holds you captive

Mary Baker went to the dentist for a tooth abscess on March 14, 2008.

She was 12 years-old.

The bright, sporty schoolgirl became acutely ill from the infection and her recovery was protracted.

Somewhere along the line, something broke inside her.

The risk of suicide for their beloved daughter and sister " was never flagged" with the Bakers. Pictured are Stuart, Mary, Henri, Annette and Jack.

The risk of suicide for their beloved daughter and sister " was never flagged" with the Bakers. Pictured are Stuart, Mary, Henri, Annette and Jack.

An eating disorder took hold and refused to release its grip.

Three years and one day later, Mary took her life.

IT IS only in the past year that Annette Baker learned anorexia nervosa has the highest rate of suicide of all mental illness.

“It was never flagged, never mentioned to us,” she says in reference to three traumatic years of medical “treatment” for her daughter.

“Anorexia is not often seen as a mental illness.

“It still has that, ‘Oh, it’s just someone wanting to look good’,  but it’s a serious psychiatric illness and needs to be treated as such.”

Annette and her husband Stuart don’t believe Mary’s illness was treated seriously enough or early enough by medical professionals.

“We were fobbed off,” Annette says.

“I was told to give her a milkshake, a coke and a vitamin supplement and she’ll be OK.

“Suggesting she go back to school and start exercising when she was clearly at her sickest … you never, ever forget those things.”

More horrifying is the fact the Bakers’ story is not an isolated one, even on the Border.

Mary was a talented athlete who loved water polo and horse riding.

Mary was a talented athlete who loved water polo and horse riding.

Across Australia to our doorstep comes a resounding cry for help from despairing parents of children with eating disorders.

Sometimes those cries are muffled by the shame and stigma of an illness too often misunderstood by both the community and medical fraternity.

ALBURY mums Meryl Wilcox and Sue Van de Ven have valiantly helped their daughters battle a severe eating disorder for 10 years.

Such is the level of stigma and delicate balancing act of their ongoing support, both wish to protect their daughters’ identities.

But they leave you in no doubt of the terrifying and brutal battle that is anorexia – one where you watch helplessly as your precious child is taken hostage by a cruel and relentless captor.

“You have to understand an eating disorder is not a lifestyle choice,” Meryl says.

“It is a brain-based biological illness that delivers a devastating breakdown of mental and physical health.

Not long before her death at just 15 years of age, Mary Baker explored the topic of mental illness in a collection of poems she wrote for a school English assignment.

Not long before her death at just 15 years of age, Mary Baker explored the topic of mental illness in a collection of poems she wrote for a school English assignment.

“It’s like there is an enormous bully in their head that does not give them peace and won’t let them go.”

These parents have learnt about the complexities of the illness the hard way.

The Butterfly Foundation is calling for a greater awareness of the potentially fatal effects of eating disorders.

The Butterfly Foundation is calling for a greater awareness of the potentially fatal effects of eating disorders.

They’ve consulted doctor after inadequate doctor, driven miles to find other doctors, read and read and read some more, attended conferences and they’ve fought, my god how they have fought, the revolving door of hospital admission.

They agree, emphatically, that the level of expertise and access to medical services for eating disorders on the Border is woeful.

“There were no services here to help us; we were pushed from pillar to post but what we needed was specialised eating disorder help,” says Sue whose daughter fell ill at 12.

Her daughter became so unwell that from the age of 13 to 18 she had 30 admissions, totalling 500 days, to the Royal Children’s Hospital Melbourne.

As a young adult, Sue says it’s impossible for her daughter to find trained eating disorder/mental health specialists on the Border.

It’s even harder for a parent to be able to support and advocate for them.

“We lose so much each time we engage with a new doctor who’s out of their depth,” Sue says.

“Every doctor we took on, took another little piece of her.”

Anorexia becomes severe and enduring after seven years, both Meryl and Sue tell me.

“As the illness progresses, the depression, the obsessive compulsive tendencies and the anxiety become worse,” Meryl explains.

“The rules, the habits, the rituals around food become more embedded and the result is higher levels of stress combined with the snowballing effects of malnutrition.”

The catch-cry here is early intervention.

Getting the right help quickly is critical.

“The first psychiatrist we saw said our daughter ‘had a bit of an eating disorder’,” Meryl says.

“I assumed we’d get her better really quickly … along the way I found out what a serious and complex illness it is.”

Meryl attended the Australian Eating Disorders Conference for Families and Carers in Sydney this month, her third in six years, where she ran into several Albury mums.

“It’s like being validated for the first time,” she says.

“At one conference they were listing the treatment options for anorexia but then said: ‘God help you if you live in the country’.”

ANNETTE says it is as comforting as it is horrifying to hear the parallels in the stories she shares with other parents.

It’s in part the reason she and Stuart agreed to join The Butterfly Foundation’s 2017 MayDay campaign, to sound the alarm on the high number of eating disorder deaths.

The foundation is calling for consistent access to specialised help, a rollout of training for all health professionals and Medicare-backed assistance.

Annette, Meryl and Sue also want to see people suffering with an eating disorder treated with more compassion.

Annette will never forget being told to deliver Mary’s weight on a piece of paper to the reception desk of the medical rooms.

“We were just following the rules but it de-humanised Mary,” she says

“From go to whoa, her dignity was lost. It was the very hardest thing to watch that.”

MERYL agrees that as traumatic as the experience has been for their family, her daughter’s trauma is far, far worse.

“You have to be able to separate the illness from the person,” she says.

“That’s not always easy as the sicker they get, the more entrenched it becomes.”

An eating disorder needs an “army” to treat it – that multi-disciplinary help needs to be accessible in the community, not hundreds of kilometres from home, Meryl says.

Family is fundamental to recovery, a factor all three women agree is too often lost in the medical maelstrom.

On the toughest days, Meryl comforts herself with the knowledge long-term patients do get better – she hangs on to that hope.

That and the beautiful words of specialist Dr Leanne Barron: “Anorexics are the most caring, intelligent people with limitless potential.”

The tragedy is for one in five people that potential is still cruelly cut short.

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