A Year of Longhaul COVID
Today, March 17, I reached a milestone: one long year of living with COVID-19. It has been a trying year, but not one without joy or abundance; as I have said again and again, I have been fortunate in so many things, particularly the support I have received this year.
Since its publication, I have been interviewed by CBSN, NBC LX News, and, just this morning, DailyMail TV to discuss my experience with long COVID and the challenges that long haulers face. In each conversation, I've been asked about my medical history, which, as I've openly discussed, includes ovarian cancer and multiple sclerosis. Though each of these diseases held its own terrors and difficulties, my experience of COVID-19 has been unparalleled in its relentlessness and the avalanche of unpredictable and debilitating symptoms.
Like many others, I have experienced countless symptoms through the course of my illness. I have been diagnosed with dysautonomia and am still trying to get to the root of my persistent arm and shoulder pain. Others have developed chronic fatigue syndrome, fibromyalgia, small fiber neuropathy, lupus, and other disorders, as well as complications of the thyroid, kidney, heart, liver, and more.
But as this is a novel coronavirus, we are learning as we go -- and unfortunately, the newness leads to a great deal of skepticism. Simply put, many people do not believe we could possibly still be sick, despite the well known history of post-acute sequelae with other viral infections. I discuss this gaslighting in my HuffPost essay, but I want to highlight the important advocacy and information-gathering work of online communities, including COVID-19 Longhauler Advocacy Project, Survivor Corps, and Long Haul COVID Fighters, working against the informational void.
These groups, and many others, have created spaces for COVID patients to convene, confide in one another, and compile information. Over the past year, they have supported and participated in research on Post-Acute Sequalae of SARS-CoV-2 (PASC). Indeed, without the work of such groups, we would know a great deal less about the longterm impacts of COVID. And most recently, patient groups have partnered with scientists and medical professionals to form a new alliance, The Long COVID Alliance, advocating for PASC research and resources, such as patient support services, post-COVID clinics, and governmental legislation and funding for long haulers' needs, with the aim of materially improving the lives of patients.
Additionally, many have asked me about my COVID rehab and hands-on help for longhaulers. I discuss the extraordinary work of Dr. Noah Greenspan and Marion Mackles, PT in my HuffPost story -- please visit Pulmonary Wellness Foundation for free online resources, as well as information on the in-person rehab program.
I will close with "Not Yet, Abby," a poem published yesterday in Autumn Sky Poetry Daily, which, though written last April, resonates anew as we are itching to return to something akin to pre-pandemic life. (You can find my other published poems about COVID here.)
Keep masking up and stay safe -- we are not yet out of the woods!