During the End Austerity March on Saturday, the hashtag #WeCantMarch was trending on Twitter for those who wanted to show solidarity with the marchers but couldn't phsyically be there due to disability or anxiety factors (these included survivors, POC, trans people, sex workers, migrants, more). To me this sounded like such a great movement, although there were thousands marching, there were also thousands at home who the march would benefit but couldn't be there. Unfortunately not everyone felt this way, with many Twitter trolls telling me I was a scrounger, ruining their country and- the one that really hurt- too lazy to go.
I don't need to justify why I wasn't at the march but overall the effects it would have on my body would've been too bad. I would've probably been ill for at least a week with fatigue, meaning that my Lupus would've gone into overdrive making everything hurt and my immune system would have a harder time fighting off illness. My hips and legs would've been virtually unusable after walking for that long and then the journey to and from the march. So to be honest marching never even crossed my mind, and I'm not going to apologise for that.
This is one of the major misconceptions about Chronic Illness, because its not something that you can see, people just assume that its not there. Just because lot of spoonies don't use mobility aides, the symptoms are below the skin and you're not always ill doesn't mean that when we're not really ill and are making excuses to avoid something.
The problem is these trolls do know how damaging this is- that's why they're saying it- but a lot of other people don't realising how upsetting this is to hear and think that they're just being funny. Some days I wish I could just pull myself together and spend time doing things I love. I wish I could hold down a stable job. I wish I didn't have to weigh up whether something is worth doing against how much pain it'll cause after. I do think that the government has a part in this, making it harder to claim disability benefits and constantly belittling us, not to mention thinking its ok to cut many services for disabled people- these all add to healthy people (mostly right wing) thinking that we don't need help and if we took it upon ourselves to make an effort we could live like "normal" people.
It took me a long time to accept my limits and to be honest part of this was because people said I was faking it and could do things if I just tried. But now I know what my body allows me to do and I'm not putting my health at risk for small minded people.
I wanted to leave able bodied people reading this with this thought- we'd love to spend time with you, our bodies just wont allow it. And the more ableist you are the less safe we'll feel around you.