On chronic illness and self-isolation

Wednesday Letter #50

At the beginning of the social distancing measures, I joked that nothing much would change for me. The two-year long arthritis flare-up I’ve been dealing with meant that I wasn’t hanging out with groups of people anyway. Leaving the house only when absolutely necessary had already become my norm. 

When the time came for cocooning, I took the dog and moved a few miles down the road to live with my parents-in-law who were also on the cocoon list. 

Only leaving the house when strictly necessary became not leaving the house at all, except for spending time in the garden. Seeing P was confined to brief chats from the required distance when he came to collect Arwen for her daily walks. 

I have since moved home and am back to being able to go for my usual walk. 

As we spend more time at home, social media has become a place to vent. We are dealing with collective grief and sheer exhaustion. People are working at home. Parents are also parenting and homeschooling, while working. We are all worried. We do not know when this will end. 

Frustration is expected and completely understandable. But it is not lost on those of us who have been told by friends, family, and colleagues “sure staying at home all day must be great!” that people are realising that this is not, in fact, great. Life must go on, but not as we know it. 

Accomodations to allow working from home were, rightfully, made. Yet these accommodations could not be made before now to make these roles accessible for disabled people. Events that cannot happen in person are being held online, without acknowledging the fact that online is the only way many people could attend them in the first place. 

We know that being at home is not as easy as simply being at home. Life continues, but differently. 

We catch up with friends over Zoom. Our group chats are always on the go. We understand that people may not have the brain space for always keeping in touch. All has changed, utterly, but we’re making it work as best we can. 

Will these changes remain when all of this is over? When our lives go back to normal, will we remember that self-isolation will continue to be the norm for some people?

When all of the restrictions are lifted and we get a sense of what life post Covid-19 lockdown looks like, I hope we remember that some of the changes we made will still be necessary for disabled people and chronically ill people. I hope we continue to include people who cannot always meet up in person. 

I hope we come out of this fighting for a fairer and more accessible society. 

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