What I want to know is this. If you were suffering. If you were either in and out of hospital or simply so weak that you couldn't function, would you like to think that people would help you? You would wouldn't you?
What if you didn't have the option of financial support from family. And if your illness for some bizarre reason, even though life threatening and more disabling than many known illnesses, didn't qualify you for government support. If you then were left in a severely disabled state, with no family support, no financial support, and no charity dedicated to helping you. And you couldn't access the medical care you needed and you were young. Young enough that the fifty years stretched in front of you looked like too hard a journey, when frankly the next fifty minutes was too hard. What would you do?
We all like to think we are good people. We like to think we help. But do we really? How often do you see your sick or elderly family or friends? Is twice a year or even three times, enough? What have you done to help them lately? Have you asked them if they are okay? Have you asked them what they need? Have you considered that everyone is thinking the same thing, that someone else is helping them? That it is not really my job, not my responsibility. But if everyone is thinking that, who is left?
I am living with an illness that as many as 200,000 Australians have. And of that 200,000, there are up to 40,000 of us who are house or even bed bound. It makes me so furious I can barely breathe at the injustice of it. We are suffering. We are alone in our fight. And NOBODY is helping us. I couldn't stand by and watch this when I was healthy. And I sure as hell can stand by and watch it now as more and more of my community fall through the cracks, become suicidal and completely disempowered by government and the community's collective deafness to our plight.
We will not let that happen. And I want you to help us do the right thing. I want you to stand up for people who can barely stand up for themselves. This will be looked upon in coming decades as a shameful period in our health history. That people suffered as I do, as we do and nobody is doing anything. Yes there are great doctors doing research and yes there are brave doctors treating us. But they need support, they need help. It is too much, the weight of so many of us on the shoulders of so few. It is shameful. If I had a recognised illness, government would subsidise my treatment and a charity would provide me support. I would have help with cleaning and cooking, with running errands, with doctors appointments. There would be choices and options everywhere I looked.
Instead I have ME/CFS and my symptoms have become so acute that in moments I cannot remember who I am. My language has become so muddled that the name of simple things like chairs or tables elude me and in moments the best I can manage is nonsensical noises. My pain can be so consuming that for days I am stuck in a dark room unable to move. And my weakness so great that my heart strains when I move.
Still when lucid, I cannot stop thinking about my community. My brave, beautiful, strong, courageous community. And I with another ME/CFS warrior started a page to make a positive change for people with ME/CFS. So that future generations do not suffer as we have. We are called Change for ME Australia.
Please watch this video:
One day soon. We will see the positive change that you helped create. Please join us today and be the change we need to make a more positive future for people with ME/CFS in Australia.