'My sister is the face of anorexia that the world never gets to see.'

If you or a loved one is struggling with an eating disorder, support is available via the Butterfly Foundation. Visit the website or call 1800 33 4673 to speak to a trained counsellor.

When you hear the word anorexia, you typically imagine teenagers or young women. But what I have learned is that this illness casts a far wider net.

As I write this, my 39-year-old sister lies in an Intensive Care Unit. She is being tube-fed, in order to keep her alive. She has been told that if she doesn’t stick to this new plan, then a doctor will eventually tell her three children that their mother is dead.

She is the face of anorexia that most of the world doesn’t see.

***

It’s hard to pinpoint exactly when it all started. As a sufferer of depression and anxiety since her early teens, she has always had her fair share of struggle. Yet she managed to keep it at bay, and over the years she has built a life that ticks all the boxes: successful career, intelligent, lovely husband, three divine children, and a family that love her. What we have all learned is that none of this is enough to block the force of mental illness.

Looking back, there were signs that all was not right. She was exercising every day. She couldn’t miss a workout, or a run. She was often seen in the pouring rain pounding the pavement, compelled by a force we knew was slowly taking over yet we were powerless to stop. She was eating less, but it took a while to notice because part of anorexia is the secretive, self-destructive behaviours around food. She seemed to be increasingly struggling with her depression.

Looking at photos around that time, I can now see that she looks thinner than usual. When you are in the moment, the pieces don’t always slot together the way they do with the benefit of time, hindsight and reflection.

Then one day, around four years ago, I received a call from my mother to say that she couldn’t get my sister up from the floor; it was as though something had just snapped and she couldn’t keep going. This was the start of her first hospital admission and the beginning of a journey that we never anticipated.

We’ve watched her rage, pull out tubes, lie about food and verbally abuse the people she loves. It is not her; it is what she has been reduced to by an illness that has ravaged her body and all but destroyed the parts of the brain that allow for rational thinking.

Every part of her is starving.

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Though anorexia typically begins in adolescence, the most seriously ill are often aged between 20 – 45.  Yet still, somehow, there doesn’t seem to be much out there to support women who are living with this insidious illness.

In the last four years we have met some lovely medical and mental health professionals. My gripe is not with them, but with a system that is inherently flawed; a system that no longer offers my sister or our family any real sense of hope. She has been in private facilities, scheduled in public psychiatric units so bleak there are no words I can ever use to capture them. She has seen psychologists and psychiatrists and was even rejected by an eating disorder specialist because she was considered too much of a risk.

It’s hard not to feel cynical when faced with this kind of reaction.

It’s also hard not to feel alone. I’ve searched everywhere for stories like my sister’s. I’ve listened to podcasts and read articles with young sufferers and whilst I have such desperate sympathy for them, I am struck by how hard it is to relate the experience to hers.

She has always been a working mum holding down a successful job and managing the needs of three children. She kept going because she had to. As is the often the case, mothers push their needs and health to the side in order to care for others. I often wonder how many other women are out there, struggling with the demons of an eating disorder and with no one to help them.

The stigma that surrounds mental illness doesn’t help.

It’s one of the things my sister finds the most difficult to deal with. She has people imply that she is selfish or that she should eat for the sake of her children. (Please believe me when I say that no mother would willingly choose this hellish existence.) And just last week, the doctor writing her medical certificate for work told her in a hushed tone that she wouldn’t put the reason for her absence on the certificate. I get the need for privacy, but the inference was that she wouldn’t want her work to know that she was absent because of her mental health.

We live in a world where we talk more about mental health than ever before, but – with attitudes like this – I sometimes fear that talk is all it is.

***

There have been a number of times over the years where my sister has spoken about wanting to help others. Despite her pain and current state of sheer desperation, she wants this story to be told. She hopes it might reach those women who are suffering in silence. She wants to highlight the stigma she lives with each day. Her courage speaks volumes about the person she is outside of this illness. The problem is that she can’t seem to find her way out of it.

And I can’t help her.

All I can do is try to be the voice she doesn’t have at the moment. I can speak about her struggle and remind people that anorexia does not discriminate. It does not just affect young women or teenagers. It robs children of mothers, families of their daughters, and women of their chance to live their best life.

I don’t have the answers, but I am keen to start the dialogue, to let other women like my sister and other families like mine know they are not alone. If this piece makes one woman or one family feel that, then perhaps it serves a purpose. Perhaps, it offers a sliver of hope that something can come from so much pain.

If you or a loved one is experiencing an eating disorder, Mamamia urges you to contact The Butterfly Foundation on 1800 33 4673.