I was browsing my Facebook feed this Sunday afternoon when I stumbled across a post by someone whose spouse suffered from chronic illness. "My partner has CFS/ME, but I don't. How can I feel less lonely when my partner doesn't want to do anything?"
I wanted to share my experience today when I attended an NHS wheelchair assessment. This becomes particularly relevant in light of the upcoming CFS/ME parliamentary debate. CFS/ME is an invisible, variable condition that many medical professionals still deny, minimise and misunderstand, and today was just another difficult reminder of that fact.
Sometimes it feels like the only emotion that really encapsulates the disabled experience is frustration. I think able bodied people expect things to be a lot less centred around anger; they expect us to be either sad and self-pitying or blithely ignoring our disability in order to forge our way forward and "not let it hold us back". Yes, those are themes too, but if it's anything I've found to be the crux of my disabled experience it's flat-out frustration.
Becoming chronically ill at the age of 18 wasn’t a shock. That would imply a startling, one-off incident that sparked everything to go after it. No - becoming chronically ill, or more accurately realising I was ill, was a slow, unpleasant dawn. And the diagnosis of Chronic Fatigue Syndrome (CFS) wasn’t a lightbulb going off,… Continue reading Where is Disability in Art?