As an elite athlete who suddenly couldn’t train, I lost a huge chunk of my social web immediately. I was candid with everyone that I needed 3-6 months of rest, but as my health deteriorated, I stopped sharing my condition. I didn’t know what was wrong with me, so I tried to keep presenting to the world as if my recovery from OTS was simply taking a bit longer than expected.
Eventually, my struggles would become almost impossible to hide.
There were months when I didn’t even have the energy to play a board game with friends. I alternately tried to hide, and struggled to explain, that sometimes even just talking required more energy than I had. When I did have the energy to socialize, everyone always asked me to do something active. When I said I couldn’t train, friends would respond, “Okay, how about just an easy jog?” or, “Great! Let’s rock climb instead.” I struggled to explain that I could not do anything other than sit in a temperature-regulated area. Understandably, it’s just not possible for the fellow athletes in my life to imagine such deep levels of fatigue that would keep someone like myself from being able to go for a walk.
It’s been a blessing and a curse that this period of my life overlapped with a global pandemic. In many ways, the timing was good. Everyone spent a year in relative isolation, unable to do many of the things they love. It made me feel less like I was missing out.
But dealing with a serious health crisis and a pandemic adds up to an enormous amount of stress. With a weakened immune system, I had to be more careful than most of my peers to avoid Covid-19, something that some friends and coworkers struggled to accept and support. Given that my illness was mostly invisible, many people just didn’t take my need to take extra precautions very seriously. I was accused many times of simply being “too paranoid.”
The pandemic made it very difficult for me to get the help I needed. I couldn’t ask others to come into my home and help take care of me, for fear of exposure. I sustained minor injuries when I lost consciousness, and found myself on the floor and unable to move due to back spasms or loss of control of limbs on multiple occasions. (See my symptoms timeline.)
I was able to receive the Covid vaccine early, but the efficacy of the vaccine in immunocompromised individuals is lower than that of the general population. Watching my friends get vaccinated and return to a semblance of their normal lives, nightmare over, has been hard, and accusations that I am still being “too paranoid” have continued. On many days it felt that my nightmare would continue forever, and nobody would ever know.