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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: Jed Finley
Location: Lake St. Louis, Missouri
Primary health condition: Ankylosing spondylitis
What were/are your go-to foods during the pandemic?
I made a whole lotta Crock-Pot chicken tacos and banana bread. But when I just couldn’t cook, I ordered from a local gourmet hot dog restaurant.
How many rolls of toilet paper do you currently have?
At least 8. We got ahead of the TP rush!
How do you feel about Zoom and digital meetings/events?
Definitely felt Zoom fatigue, but overall I loved how it brought everyone together. The pandemic would not have been the same without it.
Do you have a favorite face mask? If yes tell us about it.
My first mask, my “Evergreen” Vogmask. It makes me happy and looks good on my face. It gets me recognized as well.
Where do you mainly get your COVID-19 information from?
Johns Hopkins is my go-to. My county also has a good info page.
What TV shows and/or movies got you through lockdown/quarantine?
Hamilton. I could have not survived without Alexander!
Share a few songs from your pandemic playlist.
- “Wait for It” (Hamilton)
- “You’ll Be Back” (Hamilton)
- “Helpless” (Hamilton)
Honestly, all other non-Hamilton music was depressing to me. Felt like a never-ending roll of same old that just made lockdown feel longer.
How has your health generally been during the pandemic?
So much worse. My AS symptoms came on so much stronger.
Have you used telehealth? Tell us about your best and/or worst appointment.
I did use them, and they were all fabulous. Way more to the point without time wasted.
What do you wish other people knew about what it’s like to have arthritis during a pandemic?
Just because we are resting more doesn’t mean things get better. A change in schedule and routine can cause a flare just like a full day of work can. Not to mention all the health care I did not get because I didn’t want to expose myself to the outside world.
How has your country handled social distancing and mask wearing?
BAD. I hear some places in the U.S. were on top of things, but from my perspective, nobody seemed to care about the pandemic and didn’t want to change anything to protect the high risk.
How do you generally feel about your country’s response to the pandemic?
The U.S. is an embarrassment when it comes to responding to the pandemic. We have all the resources in the world, and yet we were able to let COVID completely run us over because somehow we were able to make a virus a political issue.
What has been the most challenging thing about navigating the pandemic for you personally?
Keeping safe when the people around me don’t care about safety. My county never had a mask order and distancing was optional. I couldn’t trust any place I might have gone or the people I might have come in contact with.
Have you experienced anything positive or any surprising upsides during the pandemic?
The month of April was a positive time, when we all came together online and did wonderful things to lift spirits when we were distanced. It didn’t last long, but April was very nice.
If you could go back to January 2020, what would you tell your future self?
I would have better prepared myself for all my conferences and trips getting canceled. Meeting up with my fellow patient advocates is my lifeblood, and not getting to meet with any of them this year was devastating to me. I would have prepared myself better for this “shock.”
Check Out More Patient Perspectives in Our COVID-19 Time Capsule
- Alice from Wellington, New Zealand
- Cecilia from Santiago, Chile
- Chantelle from Massachusetts in the United States
- Eileen from Vancouver in Canada
- Kasey from Brisbane, Australia
- Padiki from Accra, Ghana
- Sheryl from Singapore
- Simon from Manchester in the United Kingdom
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