This project would not have been possible without the support of The Wheeler Centre, who awarded me a Hot Desk Fellowship in 2015.
For the record, this post contains my original pitch to The Wheeler Centre.
‘The good new is, it won’t kill you. The bad news is, it won’t kill you’. My neurologist told me that at my diagnosis.
We all know someone with chronic disease. And we all know someone who is hiding chronic disease. But most of us chose not to think about it until we have to: when we, or someone we love, is diagnosed.
Because until you are faced with it, the emotional turmoil of living with chronic disease – of not being able to escape a disease – is difficult to understand.
You need help.
The blogosphere boasts a vibrant, helpful community. You name the disease, there is a support network. Blogs abound, including my own www.LadywithMS.com.
But chronic disease is more than the everyday sharing. While this is important (I know from first hand experience) it rarely addresses the dark side. For even in the free-for-all blogosphere, there is a self-regulating tendency to remain positive and to keep up appearances.
But people die or become too disabled to continue, and they fall silent.
Those with chronic disease represent a community within the broader community. And this community – regardless of which disease they have – is forced to contemplate scenarios that the generally healthy do not.
The purpose of this project is to share these contemplations.
I want to talk to people with chronic disease about the grief they face. About the failed relationships. About the choice not to become a parent. About the reality of disability, and the degrees of acceptance it is possible to have. And about the suicide plan many of us have, just in case.
In Strong at the Broken Places, Richard M. Cohen uses his experience with Multiple Sclerosis to chronicle the lives of ten ‘citizens of sickness’. It is an insight into chronic disease in America. But as a book, it is limited to ten stories, and does not represent Australia.
And then there is Race by Studs Terkel, an inspiration far from chronic disease. At a time when Rodney King dominated the news, Terkel interviewed Americans and asked them what they really thought of race in America. He dared to ask the questions no one else would.
I will to tell the stories of Australians whose lives have changed beyond their control. Not the politically correct version, but the real one.
Stories will be published – anonymously or not – on a new blog devoted to this content and added to over time: a living insight into chronic disease. Comment and community by family and friends will be encouraged.
The goal is not to be bleak; it is to be honest. Chronic disease is a personal catastrophe, even after you learn to live with it.
This honesty will help those living with a chronic disease know that they do not have to keep up the happy front. And it will provide a forum to communicate all that is so hard to say out loud.