Access to clinics has only gotten patchier as attention to the disease has faded.
My house was dark. Tinfoil covered the windows. The only light I could tolerate came from dimmable red bulbs. Ten weeks before, I had tested positive for COVID. On week three of my infection, I went to the emergency room with a debilitating migraine. On my third trip to the ER, I was hospitalized for seven days. I came home to a changed life. All the clichés about headaches are true—a pile of bricks on the head, a vise grip on the temples, an axe through the skull. The pain altered my consciousness. Trying to move or access a thought was like trying to see past a flashlight shining in my eyes.
It was 2024—a point at which most people in America considered the pandemic long since over. But it wasn’t for me.
Some days, I couldn’t stop crying. It was more than despair at my circumstance: Long COVID can dysregulate mood and has been linked with depression. And the disease hijacked my stress-response system, leaving my body in a constant state of alarm. Any unexpected sound, even getting a text message, would set off a jolt of panic through my body, the same sensation as slamming on the brakes while driving. I lost my ability to cope. I broke a window in my house. I put a hole in the wall.
Researchers know more about long COVID than they once did, but it is still hard to define. The clearest consensus is that it’s a complex collection of symptoms that can affect almost every organ system in the body. Theories of why COVID can linger abound, and include ongoing inflammation, the virus never fully going away, and tissue damage. Many scientists agree that multiple factors likely contribute. Meanwhile, doctors are still struggling to treat the disease; less than half of doctors know how to diagnose long COVID and even fewer—28 percent—report knowing how to treat it, according to one 2023 survey. Long-COVID patients are still reporting that medical professionals don’t believe them, and though in some cases patients’ self-diagnosis might be off the mark, the reality is that many people living with long COVID simply aren’t getting the care they need.