Where pain and love never end
Living with autoimmune disease in COVID-times
I’m stuck in bed. To occasionally pass the time between the chaos of sleep and hot tea, I read stories of people recounting their journeys through COVID-19. These are obviously people who survived to tell the tale, many otherwise healthy, sharing their struggles through the days and nights of fevers, chills, cough, and, ultimately, fear. I read this to gather information: how long will I feel this terrible? Is this symptom normal? How do you cope with children and work?
The authors almost always share about the times they gave up, the night they broke into tears, and how they felt so broken and disconnected. I stare at these pages with wonder. I don’t dismiss their hopelessness or pain or fear. It’s real… and important that people get to feel that way and share it with their family and friends and the entire world. It’s so honest, the sharing and the pain, that I think it would kill me.
I was diagnosed with lupus when I was just shy of my 21st birthday. I thought I had ringworm, at first, and then it turned out I didn’t. Lupus. While I wasn’t kind to myself or my body for a bit at first, I learned to be better in some ways. I grew up, got married, had babies, got divorced, met the love of my life, moved across the country with two kids and three dogs, got married again — a somewhat typical version of a life. And through all of this life, I manage and sometimes thrive. Sometimes managing means getting through a day, just barely, getting to work and getting through work, feeding a family, and leaning hard on a partner who absorbs my exhaustion and pain like it’s what he was built for. Living with chronic illness means ignoring the glittering pain that appears magically in my hands and feet because kids need breakfast and everyone has to rush out the door because we’re late and that meeting is important.
This is not a “martyr rant.” This is a tiny window, rarely shared, into my day to day reality. Sometimes I fear that I have conditioned myself so thoroughly not to feel my day to day aches and pains that I can’t even determine what type of pain is important. This conditioning is thorough and meant for survival. My sense of humor is twisted and sometimes brutal. Instead of pain and exhaustion, I allow myself to feel joy at seeing my family, satisfaction at knowing that my husband and I are providing for our family, and relief when everything in a given week goes as planned. I love my friends fiercely, even if there are fewer as I get older.
There’s another thread that seems to be sewn parallel to my unwillingness to deeply feel my own day-to-day pain. This one tells me to protect my family’s lives and the lives of others. It tells me to attempt to outlive my husband, who already lost a great love and doesn’t deserve to lose another. It tells me to honor myself, even if I don’t cry when I’m supposed to.
I’m watching plans to reopen with all of this in mind. Some moments I feel just cautious, and some moments fill me with rage. My kids will go out with masks eventually but I will still be afraid they will infect or become infected. I will certainly not be an early adopter, a science experiment, or disposable, but there will be people like me who have no choice.
