Locked down for the long haul Disability Ageing and Carers

Locked down for the long haul

By Connie Jones

This story is part of the My Corona series. We’re publishing personal stories about the pandemic, life in and after lockdown, and Victorians’ hopes and fears for the future. We have changed Connie’s name at her request. 

For a lot of people what’s gotten them through lockdown is knowing that it will end. But for some of us, this is life and it does not end.

I’ve had chronic illness for a long time. When I look back I can’t identify a point in my life when I didn’t have pain and fatigue, although it wasn’t until I was in my late twenties that I realised being in pain all the time wasn’t actually normal.

I’ve got a beautiful wife, Sara – we’ve been together since we were 21 – and we have a little kid, Alex, who’s eight. They’re my reason for everything, my reason to get up in the morning.

I’ve been a teacher for most of my professional life, although my health has interfered with that a lot. I used to be a secondary teacher but I had to take some time away from it, although I was still writing educational resources and creating educational videos.

For the last two years I’ve been doing my masters of primary teaching. I’m really passionate about education, but I have a lot of anxiety about whether I’m going to be able to physically do what’s required of me to pursue that career. Teaching is a job that takes all of you, and all of me is not enough sometimes, with all of the health stuff that goes along with it.

When you’re sick all the time and in pain all the time, it’s really hard to not be depressed and anxious all the time. The thing I find the most challenging is the mental health side of dealing with chronic physical illness.

It’s not linear. Some days I’m at peace with it and other days I’m really mad about it.

All of that emotional stuff, I think a lot of people were feeling that in the pandemic. People were realising Oh, I can’t do my job, I don’t have the things in my life that give me purpose and my sense of identity and my sense of connection with the world.

All of those things that make us human – a lot of people have found how depersonalising and anxiety-creating it is to not have that stuff.

I’m hoping that having been in lockdown will give people a bit of personal experience, a way to understand what it’s like for people with disabilities – how we live all the time. And that for some people it will create empathy. That’s what I’m hoping and what other people I know who are either disabled or love someone who’s disabled are hoping.

I think for a lot of people what’s gotten them through lockdown is knowing that it will end. Knowing we just have to get to a certain number of cases or we just have to get to November and this will be over and it will be okay. That’s the only thing that’s been getting them through without going insane.

For some of us, this is life and it doesn’t end.

At the moment my health is declining and I’m not leaving the house very much, while other people are going back out into the world.

I’m feeling a little bit like I had all these people with me in lockdown – I had my family with me in a very literal sense, but I had my friends with me in a figurative sense. We were kind of all in it together for the first time ever. And now everyone’s going back to their lives and I’m feeling quite alone again in a way that’s adding another layer to the mental health challenges.

I’m quite comfortable with dissonant emotions coexisting. I’m really happy for my friends who run small businesses and for my kid who gets to go back to school. I’m genuinely one hundred per cent thrilled for them.

But sitting right next to that is that sense of being sad that I’m by myself again. And that I’m feeling left behind. I don’t think those two things are mutually exclusive.

I was talking to my wife about my health. She said I don’t seem physically worse to her, and I explained that’s because for the last few months I haven’t had to go anywhere – my life has been entirely at home, contained and controllable and manageable. I haven’t had to go to the supermarket, which sometimes is all I can manage in a three-day period. I haven’t had to go to campus for uni; I haven’t had to navigate moving through the world, and that’s a huge part of what makes my life hard.

She had a bit of an aha moment, she was like, Oh, oh I see. And it’s funny because she knows the intricacies of my health situation; she often knows what I need better than I do. I think it goes to show that when you’re living that embodied experience of disability, the world really does look so different to you. And it’s very hard to communicate that to other people.

sitting right next to that is that sense of being sad that I’m by myself again. And that I’m feeling left behind.

I’m sad that everyone had to experience lockdown. I know that there’ll be long-term mental health and anxiety issues that people will have to process, so I’m not happy that it happened.

But I hope that people can take those negative experiences and think, some people have to live like this all the time and I now have a greater insight into how hard that is. So the next time they vote, or read an opinion piece about the NDIS, or do anything related to people with disabilities, I hope they’ll have a new insight into what we might need. And the world might become a little bit more compassionate.

This piece is based on an extensive interview VCOSS conducted with Connie.

Edited by Miriam Sved.