It is rare for me to fill this space with personal matters but I am doing so because maybe there is somebody out there who needs to read this today. Maybe there is somebody out there like me who has searched the internet for guiding words when they’ve felt directionless, unsupported and helpless. Maybe there is somebody out there who is doing their very best to support somebody they love and they have absolutely no idea if they are doing the right thing. Maybe they just needs words for comfort. I never found an article that painted the words I have floating in my mind, so maybe I can be the first.
For two years now my sister’s life has been plagued with Anorexia Nervosa. Diagnosed at seventeen, I remember being in the parking lot of a medical practice after her first appointment and, despite her obvious decline, we stood in some sort of numb shock. She explained that she required a physical assessment to decide whether she would need hospitalisation and tube feeding. I could not fathom the idea. The stubborn streak in me would not fathom the idea. I remember thinking that surely there was something I could say; that if I found the perfect sum of words, I could fix it. I remember wondering whether there was some sort of plan we could devise together to avoid what seemed, at the time, outrageous and unnecessary for the seventeen year old who was incredibly smart, witty, bright and kind. A meal plan, they said. Fantastic, I remember thinking. That will solve it all! Unfortunately just two months later, Emily was hospitalised for life saving intervention and tube feeding. May I add a side note here that to anybody who thinks eating disorders are glamorous and/or conceited, watching the person you love lay lifeless, being fed through a tube squashes all of that. It was in these early months that the complexities of this insidious illness begun to unravel and reveal just how difficult it is for Emily to endure and how challenging it is for us to understand. At the very same time I look back and recall just how desperately difficult it was. She would wake up another day sick and we would wake up another day heartbroken and powerless, with absolutely no clue what we could do to make it better. The only thing worse than seeing her so unwell was the accompanying helplessness. It is human nature to want to help, and it is exceptionally painful to not be able to do so.
Since her diagnosis in June of 2017, and like many eating disorder sufferers, Emily has been in and out of treatment and hospitals. She has been interstate and overseas. We have had so many arguments I have lost count. Because what you don’t see or hear is the difficulty in supporting somebody through this type of illness. She has fought me hard. I have stood over her furiously. Sworn at her. Yelled at her. Spent days without talking. I have been so, so angry. And confused. And tired. She has been all of those things too. As her cognitive function diminished, parts of her personality did too. When you know somebody before their illness, this part is just as painful as baring witness to the physical decline. So as I searched the internet for similar stories and for helpful advice, I didn’t find much. See nobody really explained what it would be like to go through this process alongside the patient. There are so many stories spoken from the perspective of the sufferer. But nobody spoke of how challenging it can be to be the supporter. Nobody explained the confusion and sorrow you will feel. But most importantly, nobody really explained the type of love it craves and the type of love it consequently births. Just as eating disorders drain you of your common sense and own beliefs they single handedly bring out every ounce of love within your being. Not just for your struggling loved one, but for everybody in your life. You begin to notice love more and to appreciate it more. You seek it out and you aim to spread it like wild fire. Because, for all the ups and downs, supporting your loved one through an eating disorder teaches you the true meaning of unconditional love. After time it begins to dull the question: “what can I do to make her better” and instead illuminates “how can I love better?” Day after day, you learn to erase happened yesterday and you create the energy to start again today. Unconditional love, I have learnt, is not the cure but it is certainly the way through.
Today Emily is in Sydney, 1000’s of kilometres away from friends and family receiving in hospital treatment. The irony of the situation is that we all waited patiently for a bed to become available and feel immense gratitude that it was offered to her, yet it still stings. I feel pain for other families in the same situation, waiting for help. I feel pain for other sufferers in treatment, so far from their families. And I feel pain that majority of the population have no idea this happens. A silent epidemic. In those early days I recall reading an article about how “eating disorders affect the entire family” and I rolled my eyes. Probably because I did not want to believe it. Probably because it sounded entirely dramatic. Here’s what I know now. Eating disorders do affect the entire family; they change family. They birth unconditional love.
And if any further question remained on my love for her, maybe I should tell you that on Sunday, a mere two days after she left Adelaide once again for treatment in Sydney, I took her jackets and jumpers, gave our dog some extra love and played her favourite songs to lessen the distance. Niki & the Dove’s “Ode to You” explained it best when they said, “and my love for you will never, ever go out.”
Treatment for Eating Disorders in Australia is extremely limited. Waiting lists often exceed 8-10 weeks with patients needing life saving intervention in our medical system in the mean time. Like Emily, some patients are separated 1000’s of kilometres from their families for weeks at a time to receive treatment. The mortality rate is 1 in 5 and children as young as 10 are affected. In September we will be running in Adelaide’s City to Bay to raise awareness and money in support of Australia’s very first residential treatment facility. If you would like to join our team and walk or run, please email: firstname.lastname@example.org
To make a donation, please head to: https://au.gofundme.com/building-hope-with-ended-ltd