I was diagnosed with Multiple Sclerosis in 2013, and I became a National Advocate for MS Australia in 2015.
I started blogging under the pseudonym LadywithMS because I was scared. I was scared of everything – changes to my health (the merest headache became a cause for alarm), the medications available, the emotional reaction of those close to me, the obvious lack of understanding by some medical professionals, and the disease itself.
I’m still scared of the disease. If I wasn’t, it would be because I was in denial. But I have a handle on the rest of it.
And so I write. I write for me, to create a record for myself. I write for family and friends, particularly when I give a detailed health update. And I write for everyone else out there who has MS.
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.
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.