Long COVID: Real patient examples of the impact
Patient 1 is a 38-year-old woman of color who was previously healthy, receiving no medications, and working two jobs as a cook and hair stylist. In the fall of 2020, she was caring for two family members with acute Covid-19 and did not get sick herself at that time. Several months later she developed symptoms in her hands and was diagnosed with Raynaud’s phenomenon. Three years later she developed additional symptoms and was diagnosed with two autoimmune disease, Sjögren’s syndrome and scleroderma.
“To be honest, long Covid has made me feel like I’m not me anymore. I’ve had to adjust what I eat, where I go. I lost my identity as a hairdresser and cook. I was the active parent of a total of 17 children and godchildren, even though I only birthed three. I can’t even pick them up anymore because my hands are ruined…the only thing I feel in my hands is pain. I can’t trust myself to hold the children or to console them physically, and that is devastating to me. It’s a double-edged sword because if I don’t do it, I feel worthless, and if I try, I fail in being the superwoman they used to see.”
Patient 2 is a 28-year-old man who was previously a mechanical engineer at an electrical car company. He was previously vaccinated but after initially recovering from a mildly symptomatic bout of COVID-19 he reported having severe post-exertional malaise and memory difficulties. He was diagnosed with long Covid.
“My long Covid life remains terrifying. Last weekend I washed my car, dried it, put it back in the garage. Then I got violently sick and could hardly get up to get food. I was unable to read or even call my mom. I’m a shell of myself. But my physical issues aren’t half as bad as my brain problems. It’s hard to describe. You can say brain fog, but that doesn’t come close to doing it justice.
Patient 3 is a 75-year-old woman who is a retired professor with a Ph.D. She was previously healthy, took no medications before 2022 and had multiple Covid vaccine shots without incident. Several weeks after being diagnosed with COVID she had ‘severe rebound’ and spent 4 months in bed. Despite seeing specialists and taking 12 medications she continues to have relapses of symptoms.
“Fundamentally, long Covid took away my life. I am unable to do the things that define me and that give me pleasure. I am unable to travel to see my family and friends. I feel imprisoned and in exile.”