Our Chance to Change Infectious Disease Narratives Amid COVID-19

We need to stop acting like long COVID is something new. Sure, COVID-19 itself is a brand new virus with many facets we don’t understand, but the “long-hauler” phenomenon has been seen before. Many infectious diseases often come with lingering effects, yet are either forgotten by history or treated as a form of insanity. This phenomenon has extended over the past century, beginning with the last global pandemic and threatening to repeat itself.

Notes on lingering effects after the 1918 influenza pandemic were once overlooked, in spite of collective experiences happening worldwide. Post-Polio Syndrome is often eclipsed by stories of iron lungs, which are treated as relics in an illness deemed “history.” Even today, Lyme disease patients with after-effects are often dismissed as “fake,” cast aside for the “cure-all” story of doxycycline. Long-term illness after an infectious disease is more common than we want to admit, and it’s time we face this reality.

The narratives surrounding illness are often designed for a clear sense of beginning-middle-end. Symptoms-diagnosis-end of sickness (be it in a cure or death). In particular, this narrative is favored in stories about infectious disease because we want to believe in conquering the “evil invaders.” Bacteria can be killed by antibiotics, and the body “learns” to fight viruses, according to this narrative. All is well when the “evil invader” is vanquished, and supposedly, we can pretend nothing has changed. “Normal” life resumes, and in the vein of “I don’t let my sickness define me”, we pretend the infectious disease was only a bad dream.

COVID-19 is forcing us to wake up and face that this narrative is no more than a perfect illusion. A fairytale concocted by people who want to believe in “healthily ever after,” or the idea that perfect health is something we can achieve. To perpetuate this narrative after COVID-19 is a slap in the face extending across the last century and at least four infectious diseases. If we do not challenge our view of infectious after-effects, long-haulers face the threat of being forgotten or deemed “crazy.”

Unquestionably, it’s frightening to face that infectious disease can leave permanent damage. I know this fear from firsthand experience with post-Lyme symptoms and craving my own “healthily ever after.” Repeatedly, I was told that doxycycline would make everything better, and that I could restart my life after years of agony from my knees to my neck. It was devastating to recognize that, after it was dead, Lyme disease still left its mark. Neuralgia. Fatigue. Short-term memory loss. Aching knees that froze like water in cold weather.

The only thing more devastating than this damage, however, is perpetuating the fairytale of “healthily ever after.” By that point, the detriment effects millions — perhaps billions — living with the after-effects of infectious disease. History has shown time and time again that “healthily ever after” is not real, and we cannot forget this truth amidst the COVID-19 pandemic. Unless we keep pushing against this toxic narrative, the after-effects of infectious disease will be ignored by future generations.

Long-haulers deserve far better, at bare minimum, the global acknowledgement of their experience and a fighting chance at accessibility. We owe them a chance at a new narrative instead of being forgotten over history or cast aside for “healthily ever after.”