Rheumatology patients share their experiences of the covid pandemic

6 minute read

How much do you know of your patients’ experiences of covid beyond your practice walls? We asked members of the CreakyJoints Australia community to share how the pandemic has impacted them.

CreakyJoints Australia shared a snapshot of Life with arthritis during the lockdown in Rheumatology Republic in July 2020.

Back then, nobody expected we’d still be in a pandemic in 2022. With the arrival of Omicron, we thought it would be a good time to share how some members of our patient community feel now. Here’s what they had to say.

How has your life changed since the pandemic started?

“My work as a consumer advocate increased a lot. My husband and I felt more at risk. I was also unable to regularly access the exercise therapies essential to manage my musculoskeletal condition.” — Annie

“I used to socialise once or twice a week, but my family stopped all extra activities and started to relax at home. We loved spending more time together and saved a lot of money.” — Dee

“I don’t socialise as much as before and am very concerned about the people I mix with, including workmates, as I have multiple medical conditions.” — Shayne

“I only see people I know that are covid-responsible or aren’t offended if I cancel plans due to my concerns. I’m lucky to be surrounded by people who actively move to protect and care for me.” — Nicole

“I was mostly housebound before the pandemic, so very little has changed for me. But the medications I take do make me high-risk. Therefore, when I go out, I’m more aware of others. People who refuse to observe social distancing or wear a mask really grind my gears.” — Neen

Have you had trouble accessing health appointments or medications?

“I had delayed access to surgery and medical and allied health services.” — Annie

“Accessing care has been easier since moving to telehealth and having scripts sent straight to the chemist.” — Dee

“All my surgeries happened as planned but sitting in a waiting room to see a GP to ask them questions about covid was frustrating.” — Shayne

“I’m on Rinvoq but, when the Actemra shortage started, many Actemra patients were switched to Rinvoq and that slowed the Rinvoq supply to my chemist. I had trouble accessing my local hydrotherapy pool and some of my health team. My pain management specialist was off with covid, which meant my pain-relieving injections were delayed a few weeks.” — Kat

“Actemra, yes. I’m now self-injecting Actemra. I’ve been one of the lucky ones.” — Nicole

“Some health practitioners refused to see me in person, even when I needed to have a physical exam. This delayed my treatment and forced me to endure symptoms and pain longer than I otherwise would have.” — Neen

Did you have trouble accessing information about covid vaccinations for immunosuppressed people?

“Information on managing conditions and vaccines was poorly prepared, updated and distributed across the country.” — Annie

“Finding this information was nearly impossible. I put off being vaccinated until it was mandated for my job. I was the first person in my town to receive the third jab and needed a letter from my GP, but they weren’t sure about the requirements.” — Dee

“There was so much information out there it was hard to work out what was true.” — Shayne

“The information was confusing and kept changing. I ended up having my rheumatologist complete a form for the local hub as my GP and local chemist didn’t have a way to enter the third dose into the system.” — Kat

“I followed the guidelines from the Australian Rheumatology Association and CreakyJoints Australia who provided a central point of reputable information which I found very helpful. Getting a vaccination appointment took many calls. You don’t have the energy for this when you’re seriously ill.” — Neen

How do you feel about being out in the community now?

“I’m still worried about many aspects of community life.” — Annie

“I felt safer with restrictions in place even though I realise they interrupted a lot of lives. With no restrictions, I feel more likely to catch covid.” — Dee

“I felt restrictions eased too quickly, however, I wasn’t too worried about my safety. I’m now extremely concerned about catching covid and have put myself back into lockdown” — Kat

“I live in South Australia. There was very little covid in our state as we had very good systems in place. Once our borders opened it has been scary and I’ve been in self-imposed lockdown.” — Nicole

“My behaviour hasn’t changed with any of the variants. All of them are very dangerous to me. I followed the science and took steps to protect myself from the start. Despite being fully vaxxed, covid has a good chance of killing me, so no, I will NOT be letting it rip!” — Neen

How do you feel covid will impact you this year?

“I’m still very concerned about being exposed and catching covid.” — Annie

“Now I’m back in the office and my child is returning to school, I’m more worried about catching covid even though our vaccinations are current. I feel it’s now more a matter of ‘when’ rather than ‘if’ we catch it now. I live in a regional town that had less than 10 covid cases in the past two years. It now has 200 new cases per day.” — Dee

“I was less concerned about getting covid before Omicron than I am now.” — Shayne

“I’m hoping case numbers will ease so I can access the treatments I need, including a hip operation that is now on hold. I hope telehealth will continue as it’s been a huge help to me not having to travel to appointments, especially when I’m in pain and not feeling well.” — Kat

“I now feel I might actually get covid. And I am terrified! Also, the attitude that we’re all going to get it makes me feel like a second-class citizen that is disposable.” — Nicole

“Covid was an opportunity for healthy people to better understand what life is like for housebound, disabled people. This could have bred more compassion and understanding. However, I’m still told covid is no big deal unless you’re already sick or old as if being sick means that your life doesn’t matter. I matter. Our lives matter!” — Neen

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.


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