The last year has been a blur. In many ways, it feels like a lost year.
While I learned how to work from home, picked up hobbies like card-making, baking, and food photography, and fully organized every drawer in my house, the pandemic has posed unique challenges for those of us with chronic illnesses. In my case, lupus and rheumatoid arthritis.
I never imagined, when I left my office on March 13, 2020 with my laptop in hand, that 11 months later things would be much the same (or worse) than they were then and that the whole landscape of my life would seem different.
My status as a chronically ill person became front and center all the time. My chronic illnesses have literally become the decision-maker for everything I do, or do not do.
As small as I thought my world was, during the pandemic, it has become even smaller. Even going to the grocery store feels like a life-or-death experience. For a while, my husband would not even let me go with him.
Now, nearly a year later, it is my most exciting (and most of the time, only) outing each week.
I’ve been lucky in that my illnesses have been pretty stable.
My rheumatology appointments have been virtual, and I am sad to say that, aside from not being able to manipulate my joints, telehealth has not made a big difference in terms of my appointments with my rheumatologist.
The 10 minutes I get in the office is about the same as the 10 minutes I get via video conference. The main difference is that I can attend from the comfort of my own home.
Other appointments were delayed and had to be in-person when they finally could take place. Lab work is stressful because entering a hospital or health center makes me feel that I am entering the epicenter of the pandemic. But there is no other option.
Medication is another issue entirely. As many dealt with significant mail delays, my prescription delivery was another casualty of a system on the brink.
It took 3 weeks for my medications to get through the mail from my pharmacy a mile away from my house.
I ultimately had to contact my insurance company because the pharmacy was refusing to do anything, and I ran out of one of my medications. They did finally arrive, after the New Year.
Our families have been wonderful. First, they were dropping off groceries at our door and waving through a window. Then finally deciding that we could not take the separation anymore and had to see each other, donning masks, using hand sanitizer, and having social distancing in place.
It has meant a lot to me that my family has taken my lead when it comes to my level of comfort when we’re together. They know what needs to be in place for me to feel safe and comfortable.
My non-chronically ill friends have been understanding. We have kept in touch via text message and Zoom. But seeing each other in person seems like a risk no one is willing to take.
So that piece is a little isolating. My friends have children that I have never met, or who will basically be adults by the time it is safe to see them.
Pandemic fatigue is honestly worse than the fatigue from lupus and rheumatoid arthritis. I think we all feel it, chronically ill or not.
But for me, there is no escaping it.
None of the activities outside of my bubble are personally worth the risk. Eating in a restaurant seems like a fantasy. Watching a movie in a theater seems like a memory from another time and place. The freedom to go where I please when I want to is a dream.
Ordering online has taken the place of going to a brick-and-mortar store. I am truly grateful that aside from groceries, nearly everything I want or need is available to me at the press of a button.
I think the main lesson from the pandemic is so many of the things chronically ill people have requested as accommodations in the past have become reality for the masses: working from home, being able to order nearly any item under the sun online, not having to wait on line at the DMV (Secretary of State office for those who are in Michigan, like me).
While it is encouraging that many areas of life are now more accessible, it is discouraging that it took a pandemic, and everyone needing easier access to things, that prompted the change.
I only hope that once the pandemic is over and life goes back to “normal,” this ease of access will not change.
While the pandemic has been life-altering, it has also reminded me what is truly important. I do not need Starbucks and trips to the mall to survive. Personally, I do not know if I will set foot in a mall ever again.
What I need to survive is my family and friends, food, and shelter. All the rest is just a bonus, and those are things that I will never take for granted again.
Leslie Rott Welsbacher was diagnosed with lupus and rheumatoid arthritis in 2008 at the age of 22, during her first year of graduate school. After being diagnosed, Leslie went on to earn a PhD in Sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, where she shares her experiences coping with and living with multiple chronic illnesses, candidly and with humor. She is a professional patient advocate living in Michigan.