This article appeared in The New York Times recently, and tells the story of a mother whose chronic illness changed the way the pandemic played out for her as a parent, and how it affected her children.
Imagine that the New York Times has phoned you to ask about your Sjogren’s Syndrome during the pandemic. What would you tell the reporter?
What role has Sjogren’s played in how you’ve lived your life during the pandemic?
I’m doing fairly well. I’ve been able to keep my medical appointments mostly, and even had two surgeries. I’ve been working part time throughout. I’m somewhat of an introvert, so the social isolation isn’t so rough.
The pandemic shut me down. I was a prisoner in my own house. To keep busy I started renovations on my home. I was afraid to allow anyone inside so I did a lot of it my own. I called experts on the phone for advice and watched YouTube videos. I did things like repairing sheet rock, painting, floor tiles, remove toilets and cabinets, wallpaper, etc. I canceled in person doctors visit and used zoom visits instead. I declined any and all invasive procedures. My husband did all the shopping at 6:00 am once a week. He has a lot of anxiety about this virus. He watches the news around the clock. My grandchildren stayed away for 2 months and they didn’t understand why they couldn’t see me. It’s was custom for them to spend every weekend with me. I wasn’t able to see my mother or help with her care. Once the CDC issued guidelines on protecting oneself we begin to venture out and allow visits from my children and grandchildren. The concern was for everyone to keep me safe. This is just a snippet of my life during the pandemic with Sjogrens.
What a great topic! I am finding its almost weird to be back out and around people. We spent too much time alone.
I will say my stress and anxiety were lower during lockdown. (Even though there were serious changes to adjust to)
The worst had been not seeing family.