Suffering from multiple chronic conditions, Nicci Blount and Christo Carlsen say they have essentially been living in an ongoing lockdown since the pandemic and are prepared to follow health precautions "for the rest of our lives."

For Ms Blount, she has a number of different diagnosis including endometriosis, adenomyosis and psoriatic arthritis which affects joints tendons and has triggered the need for a hip replacement for over a year.

"A couple of these conditions are disabling me at present, so I'm finding it very hard to walk and after three years of fighting I have a powered wheelchair coming through the NDIS because I'm currently using a borrowed one," Ms Blount said.

"I'm taking biologics which is the premier treatment for psoriatic arthritis but it's also an immunosuppressant, so basically that puts me more at risk of catching COVID and also more at risk of getting quite sick, my partner having emphysema is more at risk of death so it's quite serious.

"When the government and people generally started leaning towards the idea we're just going to catch it anyway or we have to live with it, being in a situation like us where catching COVID might equal dying there is no just living with it because you might not."

The experience in managing a disability while simultaneously taking extra precautions are burdens Mr Carlsen said has made him feel the government "don't seem to care."

"There are a lot of disabled people and a lot of people with chronic health conditions and if I get COVID I'm basically a dead man walking, so I try not to think about it much," Mr Carlsen said.

"I have chronic obstructive pulmonary disease, basically emphysema, which is a progressive degeneration of the lungs and I'm down to about 22 per cent lung capacity now.

"The government seems to only be propping up people of working age and families, all these things are valid and they're very important but old people are important too and sick people have skills but we're being ignored.

"I mean my skills are pretty out there because I'm a retired rock and roll guitarist but I made a living out of it at times being a precarious occupation."

The last ABS survey in 2017-18 found the proportion of ACT residents who suffered from at least one chronic condition was 48.7 per cent, which is an increase compared to ten years ago in 2007-08 when 40.1 per cent reported they suffered from at least one chronic condition.

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Despite the large portion of Canberrans living with a chronic condition during a pandemic it is often hidden from public view, which is something Professor Gemma Carey is determined to change.

In 2012 Dr Carey was diagnosed with Guillain-Barre syndrome, a rare condition where the body will attack a virus and keep going to attack the nervous system which in "worst case scenario, people end up on a respirator."

"I just lost use of my arms and legs and had huge amounts of pain, it took me about four years where things became reasonably normal but then after having AstraZeneca it flared up the disorder," Dr Carey said.

Since Dr Carey's body rejected the vaccine, she is unable to be vaccinated until Novavax is available and has shared her experience of taking extra health precautions on Twitter, due to doctors telling her she "cannot afford" to get COVID.

The recent birth of her child carried by a friend is the next big challenge, which Dr Carey describes as "a very isolated experience" due to the health precautions she had to take from avoiding COVID.

"One midwife had already had COVID but I was still masked for the whole birth with a full respirator from 6am till 10pm and then a couple of hours with our baby before I left hospital which was a long time," she said.

"Our baby and my partner got a PCR test so we've been isolating and I'm wearing either a N95 mask or a full respirator.

"We're now in the double situation of keeping me safe but we also now have a newborn who we desperately don't want to get COVID, so we're still living in lockdown essentially so I'm pretty isolated."

The political shift from attitudes to COVID is another barrier Dr Carey says makes a lot of people see her differently.

"I think you're seen as a bit weird now because it's a combination of other people stepping down measures and living a more normal life because Omicron is so infectious but if you're vulnerable to it you're actually stepping up measures to stay safe.

"It means you're getting further apart from everybody, from people who aren't in the same situation, so I have never felt so isolated."

While having a chronic condition and a newborn child is significant work, Dr Carey is also balancing her profile on Twitter, where she says she received "so much abuse" for a photo of her wearing a respirator while holding her newborn.

"I didn't understand all their abuse at first and then a friend said I was confronting them with their social dissidence. That living with COVID actually means catching COVID multiple times and the more times you catch it the more likely you are to have a bad outcome and people don't want to have to think about that," she said.

"Their abuse has made me more determined to go 'alright, I'm going to keep showing you what it's like to live with it.'"

"I will do it for all the thousands of people with disabilities in this boat and the more abuse I get, the more I will keep pushing back and so that's how I cope with it."

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