Or at least, that’s what I tell myself when I’m dealing with government agencies. “It’s their job to put you off.” “They make it so difficult you’ll give up – don’t let them.” “The systems are designed to exclude you, you have to fight for your rights.” But sometimes, it’s just all too hard.
If you are housebound/bedbound due to chronic illness, you will be well aware of the limitations placed on yourself and others like you in accessing adequate healthcare. However, it is an issue that largely goes unnoticed, as the medical system and broader society either do not want to know or choose not to care about people in this situation.
May is ME Awareness Month (along with literally every other illness, it seems). I’m too despondent to write something new, so I figured I’d recap my top 6 posts regarding ME/CFS and chronic illness in general.
Recently, I did something which I thought impossible. I went away for four nights, for the first time since becoming chronically ill 8 years ago. It was to the closest city: Geelong, 2 hours away, with my mother/carer/also chronically ill buddy. You might be wondering, how the fuck did you do that, Siobhan? I’m as shocked as anyone else! One night I just felt, for the first time well, ever, that I could do it. And by that I mean, do something, get sick, but not get permanently worse (which has been the norm these past 8 years).
Is it better to be dead than disabled? It might seem a shocking question, but the idea that death is better than disability is one that is promoted all around us, from fictional stories to news reports. It’s certainly a question that journalists grappled with when (clearly) struggling to write about Stephen Hawking’s recent death, in media coverage that can best be described as an “ableist garbage fire.”