Navigating (Dis)Closure During the COVID-19 Pandemic
Kristi Murray Costello
What My Friends & Family See:
In January 2021, my partner and I quarantined for 14 days and then met a couple of friends at a beach house for a mini-vacation. The two-hour car ride was brutal, but luckily we arrived one day early fearing that would be the case. I took multiple naps each day, watched what I ate and when, took my medicines methodically, and, uncharacteristic of my previous self, I didn’t help much with the cooking, participate in day trips, or partake in the hot tub. I had two flares/crashes while there, though both were experienced in private.
As the trip was ending, my friend said, “I’m relieved. You seem like yourself. Just a little tired.” I think I responded by saying something like “Oh, really? That’s good to hear,” but what I thought was, You have no idea how much energy it has taken to appear that way.
After months of debilitating symptoms and very little contact with the outside world, I sent an update over Facebook. It began, “Now that it seems I am finally on the mend, it seems like a good time to tell y’all what has been going on. We’ve now determined that I have had COVID-19 and am one of the nearly one-third of COVID-19 cases worldwide that have been experiencing long-term complications from the virus.” Then, I proceeded to share my story.
I explained that I started feeling ill in late April 2020, but because I did not have respiratory issues, a dry cough, or a “high” fever at the time, I didn’t qualify for a COVID-19 test. In fact, COVID wasn’t even on my doctor’s radar. Then, I went through my symptoms month by month, detailing how things only got scarier for a while as I began having new and exacerbated symptoms and complications: April’s battles with infections, wild blood pressure swings, consistent fevers, body aches, fatigue, tastelessness, and peripheral neuropathy; May’s brain fog, migraines, seizures, insomnia, tachycardia, the rapid deterioration of my eyesight, and loss of function and dexterity of my dominant hand; and so on until that July when the post was published. The response was overwhelming (for me, anyway, as I have never been one who did much with social media). Well over 200 comments, 400 reactions, and more than 70 direct shares, many of which had also been shared multiple times. The comments were kind and supportive, with many folks thanking me for sharing my story, and many people were shocked that COVID was hitting this close to home.
Friends and family members used words like “strong” and “brave” to describe me. They called me “a fighter” and “a warrior.” I would be lying if I said that their words didn’t make me feel proud for enduring what I had. However, there were also lots of times that I felt neither strong or brave and, in those moments in particular, I felt pressure to appear graceful through pain and discomfort, unfazed by my limitations, and positive in my outlook.
If someone texted, messaged, or emailed me to see how I was, I would sugarcoat it or engage in comparisons: “I’m feeling better than I was last month!” As weeks turned to months and months became a year, it seemed folks were growing impatient, disturbed, or maybe even skeptical of my slow healing process, and, in response, my masking became concurrently more extensive and more difficult because of the cumulative exhaustion that comes with chronic illness and the unpredictability of what each day with Long COVID (and now also ME/CFS, POTS, MCAS, and other dysautonomic dysfunction) will bring.
An article that came out two months after my initial Facebook post began: “It’s been five months since Lucy Gahan contracted Covid-19, and her life still hasn’t returned to normal.” Six months into life as a longhauler at that point, this sentence and another, a quote from Noah Greenspan, a physical therapist interviewed in the article, resonated with me. “Reach into a bag of symptoms and pull out a bag of symptoms, and that’s what they have for the day,” Greenspan explained. “It’s a twisted ball of yarn and takes a week to unravel one string” (Prior). As I write this section now and check in with myself, almost exactly two years after the onset of my original symptoms, I feel many of the same sensations and pains I did then, ranging from tingling and neuropathy to flushed and fevered, and yet I have not mentioned them in any of my recent texts, emails, messages, or posts. Maybe because the symptoms are no longer extraordinary. Or maybe because I don’t want my discomfort to become others’ discomfort.
I think about Greenspan’s description of Long COVID almost every day. Reach into a bag of symptoms and pull out a bag of symptoms, and that’s what they have for the day.
Preach, Greenspan. Preach.
Bio
Kristi Murray Costello is an Associate Professor of Rhetoric and Writing Studies and the Associate Chair of Writing Studies and English General Education at Old Dominion University. She is co-editor of the book, The Things We Carry: Strategies for Recognizing and Negotiating Emotional Labor in Writing Program Administration, alongside Courtney Adams-Wooten, Jacob Babb, and Kate Navickas. Her writing has been published in the WPA Journal, WLN, Composition Forum, Kairos, Creative Nonfiction, and several edited collections. In her free time, Kristi enjoys coffee shops, dogs (all dogs but especially her own), and hiking in pretty places.