"It is a different life, but it doesn’t have to be a worse life."
Before I contracted COVID-19 in December of 202, I was a healthy, fit, and active 45-year-old woman juggling a successful career in academia and an active family. My infection was considered “mild” as I was not hospitalized, but it was certainly not what I would consider mild. I was quite sick for three weeks with fatigue, insomnia, headache, nausea, muscle cramps, joint pain, dizziness, and even hallucinations. By the end of December, however, I felt I had made it past the worst of it and was on the way to recovery. I went back to work in January and was able to carry out my duties as the director of a thriving and busy research center at the University of Tennessee.
While I felt better overall, I was still having what I considered “relapses” of illness. I would work for a bit, then become so fatigued that I would have to lie down. Over the next few weeks, these episodes became more frequent and I realized that this was probably not the healing process, but that some permanent damage may have been done. I read a news article about long COVID and realized it probably applied to me. By March of 2021, I was sick every day. In May 2021, I went on medical leave from work and have not returned.
My life has been completely upended by COVID-19. There are very few medical resources in Knoxville for long haulers, so I travel to the Vanderbilt Adult Post-Acute COVID clinic for medical care. After a year and 40+ appointments with myriad specialists, I have finally been diagnosed with post-viral dysautonomia. This condition is incurable. Daily life for me now includes making it through the day with chronic debilitating fatigue, nausea, headaches, joint and muscle pain, and a constellation of neurological symptoms that randomly appear and disappear. I cannot tolerate heat and any exertion can put me in bed for days at a time. There are days I feel like I am just existing rather than living, but I am trying to figure out what my new normal looks like now. It is a different life, but it doesn’t have to be a worse life.