I made a decision around week four of being sick that I wasn’t going to hide my illness. Originally, we really weren’t telling many people. We had a few close friends and family members that we reached out to about the virus, but we chose to remain isolated. I am not sure what set me off. Maybe it was becoming more lucid and realizing the degree of mis- and disinformation being peddled (still). Maybe it was the media trying to tell us that kids barely get it, and they barely get symptoms, and they barely spread it. I knew this propaganda was dangerous. I also knew that districts were trying to get kids back in school, so there was incentive to play down the role children have in transmission.
I finally posted a rant on Facebook in response to something the president had said at a recent rally. This was before he became infected. Surprisingly, the post received very little reaction. There were a number of “likes” but nothing crazy. There were several comments, but not nearly as many as when we adopted our dog back in May. I was a bit surprised that I had announced that our entire family had contracted the virus, there were a variety of complications in our family, and…crickets….I still cannot decide if the Facebook algorithm dropped me into the abyss. I don’t know if the linked article about Trump turned people off. A tiny part of me believes that people think if they look away that it won’t happen to them.
I cannot look away. It happened to me. Yesterday, I had the opportunity to speak with journalist Katja Ridderbusch. She is a freelance writer who has worked with a variety of print and online media outlets. Currently, she is working on a story about patients afflicted with post-Covid neurological symptoms for Welt, a print and online German daily newspaper. We were connected through Body Politic, and I was honored to share the variety of neurological symptoms during the height of my infection and those that plague me still today. She has done a lot of writing domestically and internationally about Covid, so it was interesting to learn what she is hearing from other patients. Covid recovery takes a village.
I wrapped up a busy Monday by presenting to the Spondylitis Association of America, Northwest Chicagoland support group. This presentation gave me the opportunity to share my experience as an Ankylosing Spondylitis patient who also contracted Covid-19. Many of us in the autoimmune community, especially those on immunocompromising medications, are understandably worried about how Covid impacts our bodies. Although the long-term impacts are still to be determined, it was empowering to be able to share my experience with a group of people who are both fearful and often overlooked. We are the “vulnerable” that the media often speaks of, but no one tells us what to do. So we stay home. I am still a wife and a mother and an employee, yet “just stay home so the rest of us can live our lives” is a refrain I often hear. What about our lives? At what point do our lives become worth living?