We all need to self-isolate for the greater good, but people with disability and chronic illness must be especially vigilant. Guardian readers share their stories
Wed 1 Apr 2020 00.15 EDT
Guardian readers are sharing their experiences of living with health vulnerabilities, chronic illness and disability in the face of the coronavirus threat.
Cases of coronavirus surpassed 4,800 across Australia on Wednesday 1 April. People with compromised immune systems and chronic health conditions are at greater risk of complications if they contract the virus. Many are reshaping their lives as they cope with the threat, facing uncertainty in their treatment plans, and dealing with high anxiety.
Ricky Buchanan, 45, has a disability and lives with a flatmate in Melbourne. She’s usually homebound, and receives care in her home from six NDIS workers throughout the week, increasing her potential for exposure. “It’s really hard to know what’s the right thing to do,” she says.
“I could probably do without my care [for] two or three weeks, but I can’t do without it for six months. My instinct is to tell everyone to go away so I can hide by myself. But I can’t do that because I need the support.”
“We’ve added a lot of handwashing and surface wiping in the house,” she says. “The person who does the shopping now leaves [it] at the door while another support worker puts the shopping away.”
She’s also taking measures to protect her mental health. “Social media is wonderful when you’re very isolated physically, but it’s also where a lot of anxiety is at the moment. I’m trying to be very conscious about choosing to be on social media.”
“With my co-morbidities … they would rather put someone younger on that ventilator
In Cairns, HIV-positive man Tarquin Millard, 47 lives alone. Despite his own health issues, his main concern is for his four assistance dogs, who would be left without care in the event he needs to go into hospital.
“They are my world. If it came to it, I would just sit here and take my last breath with them. I owe them my life.”
“I am at that higher risk group of people who won’t experience just mild symptoms,” he says. He worries about a lack of beds in the regional base hospital, and the competition for ventilators. “With my co-morbidities … they would rather put someone younger on that ventilator,” he says.
Already isolated from family and friends, he feels especially vulnerable.
“Stress and HIV don’t go well together. This is actually profound, extreme human isolation. The hard thing for me is that I’m reading about people self-isolating in their homes, but I’m seeing humans connect with each other. Ironically those images of families in lockdown really make me realise how truly lonely I am.”
Some are coping with interruptions to their treatment plans. In Canberra, 47-year-old Tamsin O’Rourke is undergoing chemotherapy for breast cancer, and her long-term cancer plan is now in doubt. Her previous plan for her parents to look after her two kids while she recovers from planned surgery now looks too risky. She is considering delaying the operation until the pandemic is over. “At least without surgery I will be less vulnerable,” she says.
With advice changing so rapidly, planning for cancer treatment is becoming impossible. “It’s just a complete unknown. Logistically, how do I go about doing this? It’s just so hard to plan for the future because we don’t even know what’s happening tomorrow. It’s hard to focus on a long-term plan. I can’t think long term at the moment.”
Tamsin’s kids, aged seven and nine, are now at home as ACT schools move online. She is working from home assisting people at risk of homelessness.
“At the moment we’re just focusing on small acts. How are we going to get through today?”
In Hobart, Anne, 65, who didn’t want to give her surname, is working part-time as a support teacher for students with intellectual disabilities. Schools in Tasmania remain open despite closures in other states.
Anne has rheumatoid arthritis, which she controls by taking immune-suppressing drugs. Both her age and chronic health condition are risk factors for coronavirus. She has been isolating while at home, but there are fewer options to do so at school.
“Last week I hardly went out at all. When I walked into school I just went straight into my office. I walked through our main common area at lunchtime and there would have been several hundred students there and they certainly weren’t 1.5 metres apart.”
Her husband is a teacher’s assistant and vulnerable due to a heart condition, but is also still at work.
“We’ve just been social-distancing and isolating ourselves all weekend, but then we have to get up and go to school. I am quite nervous about what would happen if I were to get the virus. I think we’re all just floundering around in the dark and hoping for the best.”
“This week will probably be the last week that I will go into school if nothing changes,” she says. Along with many teachers, she feels like she may be “collateral damage” as the outbreak worsens.
Life outside 40-year-old Steven Barron’s home in Melbourne’s CBD has become uncharacteristically quiet as people quarantine inside. Six months ago, he was diagnosed with aplastic anaemia, a form of bone marrow failure which dramatically reduces immunity. He also has PNH – paroxysmal nocturnal hemoglobinuria – which affects red blood cells.
“It means that I’ve got a compromised immune system,” he says. “It puts me at risk of not being able to fight off infection. It would be reasonably serious if I was to get sick.”
“It’s hard not to feel nervous in the current climate,” he told the Guardian.
Like many Australians, he is now working from home. Past experience with bronchial infections which “took a long time to clear” suggest coronavirus may be particularly damaging, so he is taking all the precautions he can. But with two rare conditions, there’s little clarity on the likely outcome.
“My conditions are called ultra-rare conditions,” he says. “There’s not a lot of information out there about how coronavirus would affect me. I’ve got a good doctor, he’s fantastic, but he might not even know much about it.”
Meanwhile, Charmaine, 45, in Sydney, who is self-isolating with a chronic medical condition she prefers to keep private, felt heartened that the state-wide shutdowns would drive the message home on physical distancing.
“I think people are starting to take it a little more seriously than they were before,” she told the Guardian. “At the end of the day, we’re relying on people to be good citizens. There’s still not enough known about the virus to be definitive about who is vulnerable and who isn’t. It’s just the unknown. It’s human nature to believe that it’s not going to happen to me.”
“I feel a bit like a sitting duck,” she says. “All I can do is keep washing my hands and hope people who are not compromised follow the advice given by health authorities. Hearing people say ‘it’s only the old or sick who die’ is very confronting. Everyone’s life matters.”
