When I first got sick with Covid-19 in January 2021, I did my best to take care of myself, but it was hard. At that exact moment, Richard, my partner, with whom I had been in a relationship of 17 years, had just lost his father to complications from Covid-19 a few months ago and was now sick with the virus. And he was worse than me.
A little later, Richard got worse, he was in the hospital connected to a respirator, his whole body was being attacked.
And then, a month later, he passed away.
In this way, the love of my life became one of the many deaths from Covid-19, one of the more than 1 million Americans who have died from the virus. Saying my heart was broken doesn’t even begin to describe the pain I felt at losing him. I still have a hard time with Post Traumatic Stress Disorder (PTSD). My brain has a bad tendency to relive Richard’s last days in this world.
With all this sadness and trauma, I barely had time to notice that he still hadn’t healed me after “recovering” from Covid-19. The fever was gone, but I still had horrible fatigue, malaise, insomnia, trouble concentrating, severe body aches, and intestinal problems.
I eventually went to the doctor to see what the problem was.
“Sadness” said the physician. “You’ve had to deal with a lot.”
That physician wouldn’t be the last medical professional to attribute my symptoms to sadness. My friends and family who were aware of my symptoms did the same. I can’t really blame them. I had just lost my soul mate to this horrific virus and was dealing with the awful wealth issues that tend to arise after an unexpected death.
It was obvious that I was not feeling well. It would have been weird for him to.
Life continued under the imposing shadow of death. I did my best to persevere while feeling generally unwell. I ended up testing positive for Covid again in January 2022, but by then I was already vaccinated, so my symptoms were less severe than the first time.
But I never really recovered again. Even though I had negative test results, I generally felt sick and sore all the time. My sister suspected that she had persistent Covid-19, which is now also known as the “after-effects of Covid-19”.
This past May, I made an appointment with a female doctor. As soon as I described my symptoms to the nurse who worked with her, I felt that she listened to me and validated what I told her.
“It sounds like you definitely have persistent Covid-19,” the nurse said. “The doctor will be very happy to talk to you.”
I was about to cry. I was so relieved to finally hear that there was something that explained my suffering.
The doctor also validated what I said and showed compassion. The more she heard about what she was experiencing, the more certain she felt that she would be the perfect candidate for a nationwide study of patients living with persistent Covid-19. I signed up to participate in June.
I am grateful for participating in the study, but it does not provide any treatment and certainly no cure. And it’s not helpful in addressing my symptoms.
Every day I wake up in a lot of pain, literally from head to toe. Sometimes it takes me more than two hours to gain the strength to get out of bed.
I make a cup of coffee to fully wake myself up. The smell of coffee used to be one of my favorites, but now it’s weird to me. It seems bitter to me. It makes my stomach churn. My senses of taste and smell have not gone back to the way they were before Covid-19.
The worst is difficulty concentrating, followed by joint pain and fatigue. I have recurring stomach problems and my eyesight is getting worse, which could also be a side effect of persistent Covid-19. All of these problems are contributing factors that explain my inability to do basic tasks as quickly and confidently as I used to. My productivity fell apart.
It’s hard to decide if mornings or nights are worse. Although nights are physically more painful, psychological distress is more unpleasant at night. I can’t control my thoughts because I’m overwhelmed with anxiety. My memories of my life with Richard, of the time we spent together, and how it all ended so suddenly, replay in my mind over and over again. I can’t close my eyes and stop thinking about all that.
In these painful moments, I often think of something a doctor who cared for Richard said to me when they induced a coma to use the ventilator. She said, “If Richard survives he will have persistent symptoms and I really don’t think he wants to live that way.”
Telling me that was presumptuous and unprofessional. And it affected me quite a bit.