The Long Haul by Lygia Navarro

[SNT Gatchaman]

Essay: https://www.switchyardmag.com/issue-2/thelonghaul

The official story has been that long Covid is a new, mysterious, and therefore still incomprehensible illness—all of which is simply untrue. More than a century of medical science has told this same story, of the unlucky few who never recovered from viral or other infectious illnesses. It happened after the 1918 flu and after polio. It happened following Ebola, West Nile virus, and SARS in 2003. The narrative has always been that some sufferers are too weak, or simply too weak-willed, to return to their former lives. The truth is much more complicated.

Despite those dire outcomes, most medical schools do not even teach about the disease. ME/CFS belongs to a category with a hideous name: “contested illnesses,” that is, illnesses which some medical professionals believe are a sham. But now, as pandemic research funds are slowly being disbursed, study after study shows similarities between ME/CFS and long Covid. In both, patients’ hearts do not recover from exertion, instead appearing as if in heart failure the day after exercise. Sufferers have blood clotting which doesn’t show up on available medical tests, and immune system dysregulation. Yet the National Institutes of Health has refused to fund long Covid research on these biomarkers, instead putting money into research of treatments already debunked as contraindicated or even harmful to people with ME/CFS.

If not for decades of medical disinterest in post-infectious illnesses such as ME/CFS, long Covid might have been treatable from the get-go. The only consolation, and an especially bitter one, is that now, as the number of Covid long-haulers explodes, people like me will provide an ideal population for future research.

What I desire now is not to return to my former self—and not only because I don’t have real hope that this will be possible. I am simply done with feeling unwell all the damn time. I would be perfectly content with my wheelchair as long as I could go outside, have sex, take a shower more than once a week, and be part of an in-real-life community again.

This is not a feel-good story, not a tale of triumphing over adversity. In 2020, we heard that the pandemic’s silver lining would be all the inequalities it had highlighted; at the dawn of 2024, it’s clear those inequalities are just as entrenched, or worse, than before. What long-haulers are now living through, social justice and disability-rights activists remind us, is the American landscape as it has always been.

Creating this record, for medical science, for history, gives me strength. Yet I am haunted by the fact that K cannot remember me—or life—before Covid. What happens if, as I fear likely, Covid is still here when K grows up? What if we are stuck with it forever?

 

[Trish]

A very good article telling it like it is for so many with Long Covid and ME/CFS. It's important that records are being made of what life is really like for many so sick, and she acknowledges that she is not in the worst situation as she has a husband who cares for her and a home.
The reality of the neglect of long covid by authorities is an important message too.

 

[josepdelafuente]

Wow