When no one believes your daughter is sick

The first time my daughter told me she hated me I'd caught her cutting all the crusts of a slice of toast until it resembled a crouton rather than a piece of bread.

The second time was when we were trying to eat a meal at a restaurant and I insisted a bowl of rice noodles did not constitute a meal.

Two years on, she doesn't say she hates me anymore, but after six hospitalisations, I've watched her literally fade away as she struggles with the demon that is an eating disorder.

When my daughter was first diagnosed with anorexia nervosa I thought she'd be better in a few weeks. I had no idea what an eating disorder involved, how it manifested nor its psychological aspects.

Instead of couple of weeks, months went by and her health worsened. There were many nights I slept in her room to make sure she was still alive in the morning - that she hadn't taken her own life out of desperation or that her heart had stopped because of an imbalance of electrolytes caused by starvation.

There were other nights where I picked her up off the floor where she'd either collapsed because her blood pressure was so low, or where she'd thrown herself  to beat her head against the floor to try and quieten the voices inside.

At first I, like most, thought this was a disease of vanity, about wanting to look like those impossible images with which we are bombarded.

There is little information about this illness, but plenty of misinformation. It’s a mental illness that defies categorisation and doctors, psychiatrists; psychologists admit they are still floundering in the dark.

Treatment is haphazard, expensive and for many non-existent, which accounts for the high mortality rate – the highest of any psychiatric condition. 

I would watch my daughter reach for an apple and physically not be able to do it. I saw her withdraw from friends, family and life, ashamed of her inability to live the life of a 'normal' teenager.

At first my friends were supportive and continued to call or offer assistance as I commuted between a regional centre to Sydney for treatment, leaving my two other children and husband at home.

Her own friends tried to understand but all they saw was a young woman refusing to eat in case her weight increased.

But after a few months, the phone stopped ringing, and after a year only a couple of friends remained - both hers and mine - the rest believing it was about time my daughter “got over it” and started to eat and for myself and my husband to take the old "tough love" approach to make her do it.

Even some family refused to believe that this was anything but vanity.

My two younger sons felt just as isolated, sick of trying to explain that their sister was once again in hospital and Mum had forgotten to fill in yet another permission note for an excursion.

The ripple effect has been just as catastrophic.

Before her last admission, my daughter asked me who in the world I trusted the most. I told her my mother. She then asked what I would do if that person constantly told me I was worthless, useless, ugly. My reply was that I would remove myself from them.

"But I can't," she said. "Because the person I most trusted was myself and I can't leave the voice behind and go somewhere else."

This last admission over Christmas, her heart nearly stopped, she was in a wheelchair for two weeks not allowed to expend even the energy it takes to walk from the bed to the chair. And still people think this is a lifestyle choice.

She missed the celebrations that come with finishing school, the parties, the holidays. For the second summer she hasn't been able to go to the beach, hold down a job and just be young.

She's determined to beat this disease, to recapture the vitality of youth  and live out her dreams. She no longer tells me she hates me, but I can still see the self-loathing in her eyes when she thinks I'm not looking and all I can do is tell her I love her, and she can make it.

When people ask me how she is I no longer put on a brave face and say it’s all OK. Instead I tell them the truth; that my daughter is fighting a battle that they would have no hope of understanding, my family is coping the best it can and we will continue to be her greatest advocates in a health system and community that can’t see past the physical.

For help and support call 1800 334 673 or email support@thebutterflyfoundation.org.au

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