Kafkaesque

Are you experiencing Kafkaesque? You might have post-viral illness.

As Gregor Samsa awoke one morning from uneasy dreams he found himself transformed in his bed into a gigantic insect.

So, famously, begins Metamorphosis, by Franz Kafka. This experience of waking up inexplicably trapped in a body that has suddenly become foreign, incomprehensible, and reviled is no doubt familiar to many people suffering from post-viral illness. March 15th, 2023 was officially the first #LongCovidAwarenessDay, and scrolling through the posts from people sharing their stories under that hashtag an unmissable pattern emerged:

The headlines you’ve likely seen focus on comorbidities, and “pre-existing conditions” that are linked to worse outcomes, so perhaps you were imagining it is a very unhealthy individual who is susceptible to Long COVID. But “being in the best shape of your life,” it turns out, seems to be strangely correlated with developing post-viral illness. (In case that was going to be your strategy for avoiding it.)

No doubt, people who had not been in the best shape when they got struck down may be reluctant to post their stories publicly due to they’ve noticed society already blames them from bringing their illness upon themselves anyway, but people generally aren’t like, “I was in the best shape of my life when I got diabetes.” This illness is noticeably different.

ME/CFS, a debilitating, chronic, multisystem disease which is characterized by extreme exhaustion after physical or mental exertion, problems with memory and cognition, and muscle or joint pain, is associated with nearly half of Long COVID cases. In its most extreme form, this disease, which often follows a viral infection, can leave people bed-bound and dependent on others for all aspects of care. Because it is also the most underfunded by the NIH relative to disease burden, we can only speculate as to why so many people at the peak of fitness are affected by it. Would be great to have some actual research!

“One crucial area of inquiry is what happens with repeat infections,” writes Leana Wen. “Which will almost certainly become more common with covid exposure going forward. We might come to expect some frequency of post-covid symptoms, and the resulting disability, as a ‘new normal.’ In that case, health resources must shift from avoiding the coronavirus to reducing and treating its worst consequences — including long covid.”

Fittingly, prostrating oneself before widespread degradation and preventable suffering is an ideological position only an insect who’d accidentally woken up wearing a human body would crawl into. Imagine what the future would have looked like if in the 20th century people had resigned themselves to post-Polio disability being unavoidable rather than committing to protecting future generations from needless disease.

Unless we decide we actually want to understand and address the true nature of what viruses really are, we’re well on our way to a future just like that now. A recent study published in Neuron found a large association between viral encephalitis exposure and Alzheimer’s disease. Some of these exposures are associated with an increased risk of neurodegeneration up to 15 years after infection. Let’s check back in a few years and see how we did.

People will literally go get a probe stuck up their butts or slowly slam their breasts in a car door because colonoscopies and mammograms are preventative health measures, and we’re ok with that for everything else…. except this.

On the day after Long COVID Awareness Day, @loscharlos posted a thread about his experience trying to get desperately needed disability insurance.

“It’s a Kafkaesque nightmare, isn’t it?” Emily Fraser, former documentary filmmaker, cinematographer, teacher, and “current full-time sick person” replied. She then proceeded to share 2 truly remarkable things about Franz Kafka: “1) he worked at the state owned Workmen’s Accident Insurance Institute for 14 years 2) he suffered from what sounds an awful lot like ME/CFS starting when he was still a student.”

Born in 1883, Franz Kafka was a Czech writer whose surreal fiction is characterized by nightmarish situations in which characters are crushed by nonsensical events and uncaring authority. The word Kafkaesque has become applied to bizarre and impersonal administrative scenarios where the individual is powerless to understand or control what is happening.

According to kafkamuseum.cz:

Franz Kafka was dogged from his student years by feelings of physical weakness and inadequacy, as well as anxiety and a dread of noise, accompanied by headaches and insomnia and various symptoms of real or imagined illness. During his later years at the university he would visit spas for treatment of his physical weakness and exhaustion.

In 1991, Kafka biographer Frederick Karl described “Kafkaesque” to the New York Times as, “When you enter a surreal world in which all your control patterns, all your plans, the whole way in which you have configured your own behavior, begins to fall to pieces […] What you do is struggle against this with all of your equipment, with whatever you have. But of course you don’t stand a chance.”

It is truly mind-boggling to consider that “Kafkaesque” is such a fitting description for the absurdist, crushing nightmare of post-viral illness, of waking up in a body that has metamorphosed into something unrecognizable seemingly overnight, and the word patients themselves often use to describe the experience of navigating oppressive medical and disability insurance bureaucracies. And its namesake very likely had this condition himself?

That’s basically a diagnosis at that point.

Are you experiencing Kafkaesque?

You might have post-viral illness.