THE PURPOSE OF THE PROJECT
The purpose We Don't Talk About is to start conversations about chronic and invisible diseases.
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.
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. It is to talk to people with chronic disease about the grief they face. About the impact on friends, family and relationships. About the financial toil. About the loneliness. About the reality of disability, and the degrees of acceptance it is possible to have.
This is a site for to those whose lives have changed beyond their control. Not the politically correct version, the real one.
This project is now closed. However, it would not have been possible without The Wheeler Centre, where I was awarded a Hot Desk Fellowship in late 2015. You can follow my current projects at astridedwards.com.
WHAT WE DID TALK ABOUT
It was my own experiences after my diagnosis with Multiple Sclerosis in 2013 that led to this project. I was able to find practical and medical information easily, but stories from real people about their experience with a life changing diagnosis were harder to come by. It is my hope that those with chronic disease find what they may be looking for at We Don't Talk About.
This project is now closed. However, I blog about chronic disease and living with MS under the pseudonym LadywithMS. I am also Vice Chair of the Committee of Management at Writers Victoria, a writing teacher at RMIT University, a National Advocate for MS Australia, and a Director at Bad Producer Productions. Like so many authors, I spend a great deal of time reading and drinking coffee (preferably in a bookstore).