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This World Arthritis Day project is presented with CreakyJoints, CreakyJoints Australia, and the Canadian Arthritis Patient Alliance (CAPA).
This COVID-19 Time Capsule is meant to capture a snapshot of what it’s been like to live with a chronic illness during the pandemic among people living all over the globe. The questions are an intentional mix of light and serious.
Everyone’s responses reflect the many ways having a chronic illness is a shared experience that knows no boundaries. At the same time, you’ll find some very distinct differences in how the pandemic has been experienced from place to place.
Respondents answered questions via email and responses may be lightly edited for clarity.
Name: Alice Jones
Location: Wellington, New Zealand
Primary health condition: Ankylosing spondylitis
What were/are your go-to foods during the pandemic?
Rice bubbles, rice milk, coconut yoghurt, and stewed plums or banana — not just for breakfast. And I’ve made these spicy peanut noodles possibly too frequently in 2020. They’re so easy and delicious.
How many rolls of toilet paper do you currently have?
How do you feel about Zoom and digital meetings/events?
I was quite used to using Zoom at my previous job, but during lockdown I had to use it as a first-year student in tutorials, and I hate it! No one turns on their camera or unmutes their microphone to contribute. And virtual breakout rooms are an AWFUL invention!
Do you have a favorite face mask? If yes tell us about it.
I’m still only using disposables. They’re not mandatory and I’m not going in public much. I have worn them on a couple of bus rides but I still have most of a pack left to use.
Where do you mainly get your COVID-19 information from?
Prime Minister Jacinda Ardern and Director-General of Health Dr. Ashley Bloomfield’s 1 PM updates.
What TV shows and/or movies got you through lockdown/quarantine?
Neither. The video game Animal Crossing is what got me through for a whole month where we couldn’t leave home and school was on a break. It’s the first video game I’d ever really played, and I ended up putting in hours every day.
Share five songs from your pandemic playlist.
All Benjamin Clementine songs, namely:
- “Pound Sterling”
How has your health generally been during the pandemic?
My physical health has been pretty good, and I haven’t caught any colds or flu.
Have you used telehealth? Tell us about your best and/or worst appointment.
What do you wish other people knew about what it’s like to have arthritis during a pandemic?
Fortunately, my own symptoms are well managed with my biologic and I had filled a prescription just before lockdown, so I had enough supplies and didn’t need to have any medical appointments during that time. With my condition/medication I am immunocompromised and at a higher risk of infection, but with New Zealand’s successful elimination of community transmission so far, I am not personally worried about living life quite normally now our lockdown has lifted. I think here in New Zealand, public recognition of how COVID could affect people with pre-existing conditions has been quite high, and the lockdown rules were very well adhered to across the whole country.
One initial concern for a lot of people with arthritis during the start of lockdown was that the limited times for grocery deliveries were getting snapped up by low-risk and non-disabled people, forcing them to shop in person. But our national supermarket chains put in measures very quickly to prioritise deliveries for people with the most need. We have generally been very lucky.
How has your country handled social distancing and mask wearing?
During our lockdown it was handled very well. During essential visits to supermarket, everyone kept their distance and lots of masks (was not mandatory). In level 2 masks were mandatory on public transport. People do not keep 2 metres [approximately 6 feet] distance anymore.
How has your country handled unemployment or disability/illness caused by COVID-19?
The government paid wage subsidies to try and keep small businesses from having to stop paying their employees through lockdown. But the unemployment system still very frustrating to access as far as I know, and not enough support.
How do you generally feel about your country’s response to the pandemic?
The strict lockdown was extremely effective, but New Zealanders have been pretty smug about it. The negative attitude toward people trying to get home from overseas for months has been shameful.
What has been the most challenging thing about navigating the pandemic for you personally?
My mum got a cancer diagnosis at the end of lockdown, and trying to visit her during her treatments has been frustrating at times, with changing hospital rules and just general worry about the super high risk for her. My aunt also got a terminal diagnosis and went into a care facility quite unexpectedly, so we don’t know if/when we’ll be allowed to visit her. Not knowing when we’ll get to see my partner’s family in the U.S. again. Having nothing to do during lockdown because my university wasn’t prepared to move online quickly.
Have you experienced anything positive or any surprising upsides during the pandemic?
We saved a lot more money during lockdown and finally bought a house post-lockdown. The interest rates were so low. My partner has been allowed to work from home.
If you could go back to January 2020, what would you tell your future self?
Take a quick trip to see your partner’s family — now. And visit your aunt. Invest in PPE stocks?
Check Out More Patient Perspectives in Our COVID-19 Time Capsule
- Cecilia from Santiago, Chile
- Chantelle from Massachusetts in the United States
- Eileen from Vancouver in Canada
- Jed from Missouri in the United States
- Kasey from Brisbane, Australia
- Padiki from Accra, Ghana
- Sheryl from Singapore
- Simon from Manchester in the United Kingdom
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