Pamela Bishop of Knoxville, Tennessee, is a former director of a research center at a university. At 46, she retired after living with long COVID made it too difficult to work and care for her family. She shared her story with TODAY with the hopes of helping people with long COVID feel less alone, and also to encourage researchers to study it more.
Before I contracted COVID-19 in December 2020, I was what my 11-year-old daughter calls “active mom.” I ran a research center at a local university, taxied my daughter and 15-year-old son to sports practices and games, managed our family’s social calendar and ran the household.
Now if I attend their sporting events, I spend most of my time lying in the car with the air conditioning on, my eyes covered or in dark sunglasses. I have no endurance for walking, which means I cut back on what practices and games I even attend. From one day to the next, I never know if I’ll wake horribly ill or be able to function. That makes planning very difficult. But after struggling with full-time work and parenting, I realized that I couldn't do both. I retired from the university to focus all my remaining energy on my family.
Prior to COVID-19, everything was going as planned. We had a future. We knew our roles in the family and household. Then COVID hit and everything was turned upside down. The pandemic already felt difficult for my children, and then their mom became sick and never got better.
My husband and I had COVID-19 in December 2020. He was asymptomatic when he tested positive. I had lost my taste and smell — that’s when we figured I also had COVID-19, and a test confirmed it. My husband experienced no symptoms while I started developing what seemed like new ailments daily. I experienced severe insomnia, memory impairment, brain fog, terrible headaches, fatigue, joint pain, leg pain, foot cramps, gastrointestinal issues, rapid heart rate, shortness of breath, chest pain and anxiety. This occurred in what I considered the acute phase. As a researcher, I kept a careful log of my symptoms.
My oxygen levels never dropped, so I never went to the hospital. By Christmas, the acute phase of COVID-19 had ended and I started feeling a little better. I still couldn’t taste or smell but many of my symptoms dissipated.
Then in January I experienced random fatigue and noticed I was easily agitated, which wasn't normal. I returned to working from home, but I felt easily exhausted. By February the fatigue became constant and I started having chest tightness, joint pain and more brain fog. Then I was hit with severe nausea and weird mood swings.
I felt really sick when I had COVID and thought I was going to die. As these symptoms persisted, I thought that they were part of the healing process. After all, my body had been through a lot. But then I became scared. One day in March I couldn’t wake up. It was like my brain wasn’t working and I could not open my eyes. Every symptom worsened. I went to my doctor and all my test results were normal. They offered me an antidepressant, which at that time I didn’t need. It was implied that I was simply anxious.
I knew my mental health wasn’t the issue, but I didn’t know where to turn. My work days became longer as I found I needed to rest after each Zoom meeting. After a meeting in April someone noted a local writer had been detailing symptoms similar to mine on social media, and I reached out to her. She told me about a local primary care physician who believed her and was trying to rule out possible causes for her lingering symptoms. I made an appointment with that doctor as I had become convinced that I had something people were calling long COVID. I knew something was very wrong with my body and my brain.
I knew something was very wrong with my body and my brain.
I soon learned about a long COVID clinic in Nashville and I made an appointment. I was one of their first patients. Again, many of my tests came back as normal, which feels incredibly frustrating. Sadly, it’s not uncommon. I’ve been to more than 100 doctor appointments. I’ve seen about 20 different specialists, including neurologists, cardiologists, gastroenterologists, psychiatrists, psychologists, physical therapists, speech and language pathologists and pulmonologists.
As I tried navigating treatment, I started developing terrifying tremors while fatigue, brain fog, nausea, tachycardia, muscle cramps, back pain, dizziness and an inability to eat full meals continued. No one knew what was happening.
Between managing my health, running a research center and caring for my family, something had to give. That's when I retired. After collecting all my symptoms and test results, I presented a mini proposal to my cardiologist about what I thought might be wrong with me. I was finally diagnosed with autonomic dysfunction. It seemed like he suspected that diagnosis for a while before diagnosing me at my insistence. After I was treated at an autonomic dysfunction clinic, I was diagnosed with POTS, which is common among long COVID patients. (POTS is short for postural orthostatic tachycardia syndrome, a condition that involves an excessively rapid heartbeat and can cause dizziness upon standing, among many other symptoms.)
Having long COVID is incredibly frustrating. But that’s why I want to share my story. There are so many people suffering and more research needs to be done to help us. I want my life back and I know I’m not alone. What’s especially maddening is that the symptoms increase or change without warning. I recently started experiencing severe hand pain that moved from my hand to my wrist and my elbow, and I need to see a rheumatologist to try to understand why this roving pain started. It is very likely I will get no answers.
The cost on my mental health is real. I feel like a guinea pig, trying a variety of different medications with various side effects, to see if anything changes. Being chronically sick is almost like a full-time job. And it impacts my children, too. My daughter started having breakdowns and crying at school because she misses active mom. But it’s more than just her longing for the old me. She also worries I’m going to die. It’s been really hard because I went from active mom to sick mom. Long COVID causes a lot of anxiety and fear for both the people experiencing it and their families. I experience guilt and shame and feel like a burden to those I love. I’ve been talking with a therapist (as has my daughter) and that helps me. But sometimes I miss being a contributor to the household income, social scheduler, research center director, household manager mom. I’m learning that my value is not tied to how much I accomplish.
Being a part of a support group has also helped me tremendously. Having a community keeps me sane. I want others who experience long COVID to know they’re not alone. I also hope more doctors and researchers try to understand long COVID and find better treatments or even a cure. We could use a little hope.
This interview had been edited and condensed