COVID long-haulers: I caught coronavirus in March. I still haven't fully recovered.
I got COVID-19 in early March. It is nearly seven months later, and in September alone I’ve been to five medical specialists. I underwent an MRI earlier this month, and I have an echocardiogram coming up. I was recently diagnosed with glaucoma; my doctor believes its sudden onset was caused by the virus. My career as a photographer has already come to a screeching halt; the irony of suffering damage to my eyesight — my lifeline — felt like adding insult to injury.
This description might lead you to think I was a New Yorker who held onto my life on a ventilator through the spring, but that is far from the truth.
I woke up on a Friday, March 13 (I hadn’t been superstitious before but perhaps it’s time to reconsider), with all of the signature hallmarks of the virus I had watched, on the news, spread through China and Italy. Of course, I never imagined I would be among the first in my area to test positive for this novel virus that was supposed to only affect the elderly and the immunocompromised.
Not your typical coronavirus patient
At 45, I was at the healthiest I’ve ever been, exercising regularly and had no preconditions of any kind. The thing is, I didn’t even have that bad a case of COVID. I had an average “Tylenol and Gatorade” version and I recovered at home, isolated in my bedroom.
When I emerged from 18 days of isolation, I ran off to immediately donate my antibody-rich plasma and sign up for every study for which I qualified. I was still tired and, even though my night-owl reputation had always been for outlasting brides and grooms at their own weddings, by 7 p.m. I was counting down the minutes until I could go to bed. My stomach issues never resolved but I was generally OK, until the summer came and I had a resurgence of symptoms so severe that the nausea sent me to an urgent care clinic, where they insisted on giving me a diagnostic test — I presented as that symptomatic even though I had “recovered” months earlier.
Recovery has its own risks: With COVID-19, don’t only focus on deaths. Too many Americans are alive and in misery.
The fallout of COVID to my body has, even with a diagnosis of glaucoma, been nothing compared with many struggling with long COVID, or post-COVID syndrome. I count my blessings as I see others, marked by all metrics as “recovered,” struggling with such extreme post-COVID medical complications that their lives have been all but shattered.
As our nation tries to wrap our collective mind around the nearly 206,000 lives lost so far to COVID-19 this year, there is another parallel crisis that already has us in its vicious grip.
The Centers for Disease Control and Prevention says a third of people infected with COVID are not recovering according to the expected timeline, a few weeks after testing. Of those ages 18-34 with no underlying conditions, 1 in 5 are not getting better two to three weeks after testing. It is past time that we apply the same energy, investment and innovation to treat people suffering from post-COVID syndrome as we are to those hospitalized with the virus.
Long-haulers need answers
COVID “long-haulers” are in trouble. They are experiencing the ravages of a vascular disease that we now understand can wreak havoc on multiple organ systems. I started one of the largest COVID-related grassroots organizations in the world, Survivor Corps. We have expanded our mission to focus on patient advocacy because our members, most of whom “recovered” at home, are suffering. They are at home, unable to return to any semblance of their former lives.
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Many young healthy people with no preexisting conditions are skeletal shadows of their former selves; they are suffering heart attacks, strokes and a host of new health complications that can leave them tethered to heart monitors and more. Neurological impact has left survivors unable to find their words, forgetful and unsure about returning to jobs that require critical decision-making.
The term “brain fog” is used often among our members. They are months into their COVID journey, but they are no closer to answers. Other than a slew of new diagnoses, they are met with blank stares and few solutions from their doctors.
Long-haulers, if they are lucky enough to have adequate insurance, are shuttling from specialist to specialist. But most have little medical access, and few doctors seem to understand anything about post-COVID syndrome. It is all so new that even acknowledgment by the medical community of this is considered a victory.
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Post-COVID care centers must be established nationwide, and it’s past time to start investing in therapeutics to help COVID long-haulers with the same intensity that Operation Warp Speed put into the race for a vaccine.
We are demanding a parallel race for a cure for the living. We put into mass production multiple vaccines, even without knowing which will emerge most successful — the money is clearly there. We have seen unparalleled collaboration between the scientific, medical and biotech world; we need to apply this same energy, with similar funding, to understand post-COVID syndrome.
We are looking at what could be a potentially immense population of newly disabled Americans, including young people. Our first consideration must be the well-being of the millions of Americans who've contracted coronavirus, many of whom are suffering from a virus that has left them alive, but broken. We need to mourn the dead but, simultaneously, we need to cure the living.
Diana Zicklin Berrent is the founder of Survivor Corps, a nonprofit connecting, supporting and mobilizing COVID-19 survivors.
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This article originally appeared on USA TODAY: Coronavirus long-haulers: We recovered from COVID-19, but still suffer
