“Chronic Illness doesn’t have an end date” ~ Miranda Hart
As the COVID-19 lockdown restrictions are eased, I can’t help but wonder: What about us? What does this mean for those of us who are housebound due to chronic illness? What happens now? How soon will the struggles of isolation become a distant memory? How soon until all these new online resources are removed? Will this period of forced isolation bring a greater empathy and understanding of the challenges we face, or will we just be forgotten again?
Feeling more connected during the lockdown
Oddly, during this COVID-19 lockdown, as someone who is housebound due to chronic illness, I have felt more connected to the outside world than I have in years. As I explained in my post: When the isolation of illness causes the outside world to feel ‘alien’, “When you have severe ME/CFS, or any illness that causes you to become housebound, you feel isolated. It’s very easy to feel forgotten. Your life is put on hold but the world goes on outside without you.”
But the lockdown meant I was no longer missing out, because everyone else was suddenly in the same boat. My weird housebound life became ‘normal’ for a while. Healthy people experienced a little of what life is like for me – minus the debilitating symptoms, of course. And I have seen more empathy, kindness and understanding in the last few months than I have in all the years I have been sick.
The world suddenly became accessible
And so much more has been happening online that I could be a part of.
Seemingly overnight the world became accessible. The adjustments we have been tirelessly campaigning for for years, like remote working and online studying, which we had been told were too much hassle or too costly to implement, suddenly became normal as the rest of the world demanded it. I have to admit I was angry at first; why did accessibility only become a priority when the masses needed it? But it’s been nice to be able to be a part of this new accessible world.
Museum tours, online courses, musicians hosting online gigs, celebrities reading poems and extracts from their books. Activities for children and the whole family. Online work opportunities have also increased, along with free online educational resources. I have even been learning to play the guitar online courtesy of James Bay’s Live Lessons, and this would not have happened without the lockdown.
The lockdown also brought us the delightful ‘Chambles’ from Miranda Hart, where she took the opportunity to highlight the long term isolation which is the reality of many of us living with chronic illness.
People have been adapting to this isolation by reaching out to others virtually, and I have thoroughly enjoyed being included again, after years of being excluded and feeling forgotten.
What happens now?
As the lockdown eases, I fear the knock on effect on my mental health as everyone slowly emerges from this temporary period of forced isolation.
The prospect of seeing everyone return to their pre-lockdown life; meeting friends and family, having fun, enjoying the sunshine.. fills me with dread. It’s impossible not to be resentful, and to feel sad and frustrated. This is a world I cannot be a part of. I think there will be a grief period for all of us that are housebound due to chronic ill-health.
I would like to be optimistic and believe that the lockdown will bring a greater understanding of the frustrations we face, but sadly I fear we will be forgotten pretty quickly. I honestly think the struggles of isolation will become a distant memory as the rest of the world returns to normal. I truly hope I am wrong.
I hope some of these online resources remain – I would certainly miss them if they were removed. And I also hope that now we know the world can be more accessible, and we have the knowledge and tools to do so, that we won’t face as many obstacles in the future when making online accessibility requests.
And to those of you who aren’t housebound but are high risk and continue to self-isolate – I see you. I know it’s a worrying and frustrating time. The government has dealt with the transition badly and seemingly forgotten about you. Please stay safe and do what’s best for you.
Please don’t forget about us
A message to our healthy, non-disabled friends; please don’t forget about us – our lockdown has no end date. Check on your chronically Ill friends. And please take some time to reflect on how challenging the lockdown has been for you – it will help you support your housebound friends in the future.
And lastly; The first healthy person that, following this lockdown period exclaims: “It must be nice to stay at home all day“, in response to me talking about being housebound, is going to get a very colourful reply.
What are your thoughts? Do you think this period of isolation will bring a greater understanding? How have you found the lockdown, have you felt more connected to the outside world?
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I feel alllll of this. Especially because COVID isn’t gone, but people are acting like it is!
The “out of sight, out of mind” comes back again. Also, there are those who seem to think wearing a mask and admitting there’s a virus is a sign of what political party you support or how strong your faith is or how strong you are. They don’t see that wearing a mask, etc is actually protecting others. And of course, they don’t even think about those with chronic illnesses. Just stay at home, seems to be their thinking.
I feel all of this especially someone whose life has been improved quite dramatically with COVID-19 when the Zoom time to chat’s stop and the online shows and comedies where does that leave us, at a time when accessibility has been brought to the fore, do we know have it just as quickly removed xx
I am hopeful that the pandemic will actually result in more notice being taken of ME/CFS. The media have been publishing a number of articles about it ,and people in the public eye have suffered serious post-infectious ME-like symptoms. Politicians are more likely to pay attention right now; I urge local associations to contact MPs and councillors. Strike while the iron is hot!