Community attitudes to covid have gone from accepting covid-safe practices to forgetting them altogether. People with autoimmune conditions don’t have that luxury.
Since 2020, CreakyJoints Australia has published several articles in Rheumatology Republic related to the experience of people with autoimmune conditions during the COVID-19 pandemic. Looking back, we can see how attitudes to covid-safe practices have changed in our community.
In July 2020, our article Life with arthritis during the lockdown highlighted the concerns of five medically vulnerable people. They were worried about how covid would affect their health; however, their daily life wasn’t much different to the rest of the community.
Our article Rheumatology patients share their experiences of the covid pandemic, published in March 2022, showed that many vulnerable people valued the security of covid lockdowns and restrictions and became more anxious as these practices were phased out. To keep themselves safe, they continued to follow covid-safe practices such as wearing masks, social distancing and avoiding large groups.
In 2024, we went back to our community members to see if they are anxious about the latest wave of covid in the community and how they keep themselves safe. We know we timed this well as we received our biggest response ever.
Our respondents tended to be divided between those who have continued to self-isolate as much as possible and those who go out into the community but still follow covid-safe practices.
Is ‘anxious’ the right word?
Several people commented on our use of the word “anxious” and felt that their precautions were appropriate.
“I think it would be better to say ‘cautious’ rather than anxious. Yes, it is anxiety provoking for me, but I think anxiety suggests it isn’t rational to take more care when you are immunocompromised.” — Sim B
“I’m not any more anxious about covid than any other respiratory infection. Being immunosuppressed, I live with the knowledge that any infection might be the one that kills me. I’m more worried about the flu because I’ve never had it before. As long as I stay protected by vaccinations, there is not much point in living in fear.” — Kitty O
However, others did feel anxious about covid in the community and their experiences are also valid.
“When I get ‘brave’ and don’t wear a mask, or let someone into my home, I get anxious and worried. It still scares me and deeply affects my life. I have become paranoid, and it feels heavy.” — @casual_chick_lifestyle
Common health concerns
These key concerns emerged about the effects of covid on respondents’ health:
- The possibility that they might experience more severe covid symptoms due to their existing conditions and treatments.
- The potential need to stop taking their DMARDs to give themselves a better chance of fighting a covid infection (or secondary infection), as stopping DMARDs could trigger a flare of their autoimmune conditions.
- The concern that having covid reduces immunity to a range of other illnesses and viruses.
- The fear of developing long covid and its persistent symptoms.
Social concerns
A message that came through loud and clear was the sheer frustration with how the public has become so complacent about covid-safe precautions.
“I have lost many relationships due to covid denial and minimisation, as well as conspiracy theorists. It’s horrendous with no end in sight.” — Karen D
“I do not trust people to do the right thing, they go out and about when sick. If they go out, they don’t wear a mask. I know too many people who are sick of getting vaccinated and stopped at three shots.” — Trudi B
“My son has an autoimmune condition and has now had covid multiple times even though he wears a P2 mask where possible. His friends are less covid-safe, so it’s hard.” — Jenni B
Public health measures
Our respondents commented on a range of public health measures. Some were critical of the lack of covid-safe practices mandated, or even recommended, by our governments and organisations. However, many were grateful for the access to telehealth services and antiviral treatments for covid.
“The public were sick of hearing about covid so the government has been trying to appease the majority whilst the vulnerable are ignored. We need to protect ourselves, remain informed, and advocate for ourselves.” — Kym B
“Peer-reviewed medical journals are increasingly showing the real impact of covid but the mainstream media won’t publish the results. Those with autoimmune conditions have been left out to dry.” — Jenni B
“Why can’t we have even one session a week when extra precautions are taken in supermarkets, cinemas, cafes, health services and so on, so high-riskers can get out?” — Charlie P
“I recently got covid for the first time. I have had all my vaccinations, which probably helped me avoid severe symptoms. I’m very thankful for having access to my GP via telehealth and getting an e-script for antivirals promptly. I felt much better after taking them.” — Elle F
Self-protection measures
Most of our respondents said they still regularly use hand sanitiser and wear masks when they go out. They are especially cautious in healthcare settings due to the lack of covid safety precautions and the risk of being exposed to people with covid or other respiratory viruses.
Staying up to date with covid vaccinations and boosters was one of the most common forms of self-protection mentioned, with most having six or seven doses to date.
What can healthcare providers do to support their patients?
Several respondents said their healthcare providers no longer wore masks and that their clinics didn’t appear to use air filters or monitor ventilation. Some were disappointed that their providers weren’t more proactive when it came to suggesting ways to mitigate their covid risks. Those who said their providers were proactive were grateful for it.
“GPs and rheumatologists can educate their patients but not scare them about the risks. I’m a virologist, so I understand the risks of my condition and treatment versus covid infections.” — Monica S
These are the main messages our respondents had for healthcare providers:
- Reinforce the notion that covid is a serious condition and there are measures patients can take to help protect themselves. Not all patients fully understand this.
- Create contingency plans with patients that cover what they should do when they first notice symptoms and how they can access medical help urgently.
- Discuss potential options for things like caring for children, working or studying, or managing other conditions if they develop covid.
A glance through social media platforms shows there are many thousands of people around the world concerned about how covid will continue to affect them. They are also feeling the stigma of using measures to keep themselves as safe as possible. If we ask similar questions in two years, let’s hope we don’t receive the same frustrated replies.
Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.
CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community.
