By Je Banach April 1, 2020
Photo: © Jonas Bendiksen/Magnum Photos
As videos of a large group of shoulder-to-shoulder bargoers singing “Sweet Caroline” and images of spring breakers on Florida beaches recently went viral on Twitter, a group of activists living with conditions such as fibromyalgia, diabetes, asthma, and spondylitis played tag team with the arthritis community @CreakyJoints to plan their own Twitter movement—one that would introduce the carelessly defiant to the millions of people across the country who stand to be catastrophically impacted by others’ casual insistence on partaking in Neil Diamond karaoke during a pandemic.
The hashtag #HighRiskCovid19, which took off trending, is amplifying the voices of the disabled and chronically ill—a group too often boxed out of public conversations about their own rights and the policies that impact their lives and livelihood—and putting a face to what’s at stake if we don’t all work together to limit the spread of the virus. People of all ages and backgrounds have been sharing their names, their photos, and their stories, speaking candidly about why they are at risk, what could happen if we don’t act fast, and who else will be affected if they fall ill with COVID-19. Many tweeted about being immunosuppressed due to cancer, disease, and chronic conditions, prescription meds, or recent surgeries that make them more susceptible to illness, less capable of fighting off infection, and at greater risk of dying if they do contract the virus. As alarming reports circulated about shortages of tests and ventilators in U.S. hospitals, the community also spoke candidly about the terrifying possibility that other people’s irresponsible decisions or deep-set, ableist cultural biases could lead to their premature death. Anna Landre, a 21-year-old activist, writer, and Georgetown University student, tweeted about her fear of being disconnected from a ventilator if “doctors decide that disabled people aren’t worth treating.” Gary and Melissa Short, the parents of Naomi Short, an eight year-old living with stage IV brain cancer, tweeted about the vigilance required to be sure the virus isn’t accidentally transmitted to their daughter by her caretakers, and their efforts to calm Naomi as she spoke about her fear of death. Countless posters shared their concerns that not enough people are practicing social distancing, putting everyone in greater, unnecessary danger. While each response to #HighRiskCovid19 is unique, together the stories offer two clear and unified messages: Life-altering illness and disability can happen to anyone at any time. And, even if you think you don’t, you probably know someone who falls within this high-risk category. I am one of them.
Though stories of chronic illness seldom have a clear beginning, I always start mine the same way: Somewhere around the year 2000, as the world was gliding into a shiny new millennium, I got sick and I never got better. There were no public health warnings like we are seeing with COVID-19, nothing to let me know what was coming. I simply became ill and never recovered. It has been interesting to witness people who seem sure that they can simply “get COVID-19 over with” and get on with things, since in fact, some doctors believe that incurable chronic illnesses like mine may have been set in motion (or at least exacerbated) by a lingering virus or damage to the body from a post-viral illness. While I started out with a smattering of manageable symptoms followed by a mysterious rheumatic-fever-like illness that I thought I would just “get over,” I ended up with a preliminary chronic-but-not-progressive diagnosis of fibromyalgia that, over the course of the next two decades, morphed into a cascade of symptoms affecting every system in my body: vertigo so severe I couldn’t walk without falling down, atypical migraines that left me bedbound, crushing fatigue, and unexplained face rashes. I amassed specialists in all areas of medicine (last year I saw somewhere near 10 doctors in a single year) and disappointedly collected a growing assortment of new and ever-evolving diagnoses, which now include a probable seronegative autoimmune disease and the rare condition erythromelalgia, aka Man on Fire Syndrome, which periodically makes my hands or feet or ears feel like they’ve been rubbed in broken glass or, as the name gives away, set on fire.
While my own complex chronic illness might be considered mild (yes, mild) compared to those of others in the high-risk group, I share in their collective experience. The fact that my condition falls primarily within the category of “invisible illnesses”—meaning that, to many, I typically don’t “look sick” (though such a thing is no measure of illness)—has done nothing to insulate me from the very real feelings of fear and anxiety that are an inherent part of living as a high-risk person during the time of COVID-19. Like many #HighRiskCOVID19 folks, I have noticed that much of what the general population has been experiencing over the past few weeks—a suddenly altered lifestyle that includes long periods of isolation, difficulty getting basics like food and medicine, missed work and lost wages, and even awareness of one’s mortality and fear for their future—is a kind of amped-up version of what we already experience in our day-to-day lives. Now, though, we who are high-risk feel the additional burden of the loss of medical care and home support as doctors’ appointments are too risky and caregivers, helpers, and friends are unavailable. We are affected by shortages of basic medical supplies like masks, gloves, and alcohol prep pads. Supplements that we normally take daily to stay as well as possible have been disappearing online. This week, a kind pharmacist passed a bottle to me through a drive-through drawer when online ordering became an impossibility and I was forced to leave home. While I passed on a chance to try taking Plaquenil, or hydroxychloroquine as it has become better known, when it was offered to me by a specialist last winter, I can’t help but think of those who certainly do need it to prevent organ damage, people who are now unable to get it due to shortages because of irresponsibly spread rumors about the drug’s possible but as-yet-unconfirmed efficacy—rumors that have already led to at least one death.
There is also a heavy emotional toll for those who are high-risk. I lost count of the number of people who, in early stages of the COVID-19 spread, said within earshot of me (quite incorrectly, I should add), “Good news! I hear that only people with underlying conditions are dying!” Heather Love, a single mother living with multiple sclerosis, tweeted a reminder to “[b]e mindful of who you’re venting to and what their situation is!” She paired it with a meme of the well-known incredulous blinking guy Drew Scanlon, captioned: “When you’re disabled and could rarely leave home on a regular basis before this and people complain to you about being stuck at home.” Humor, after all, is good for the immune system.
I live alone and, like others, am frequently grounded by my symptoms. Pre-COVID-19, I have been forced to curtail socializing in order to manage my illness. Just a few weeks ago, a bout of severe vertigo and migraines meant several days at home with only my small dachshund. I wonder when the next flare-up will come. I wonder if I will ever have a chance to fall in love after this. I think about it often.
“Some say disabled people have valuable lessons to teach nondisabled people about going it on their own,” writer Andrew Pulrang said recently in his Forbes essay “Disabled People Have Unique Perspectives on Solitude.” “Disabled people themselves agree, sometimes with a dose of bitter irony. But many of us are also worried we will be left on our own, without the help we need to meet our most basic needs.” Now just try to imagine the additional burden of seeing news reports suggesting that high-risk people infected with COVID-19 could be denied testing and treatment, including ventilators.
As a formerly young and healthy person who used to play sports year-round, stay out late at night with friends, and generally function without restrictions, I know how easy it can be to disregard any thoughts or conversations about illness. But I can also attest that a pathogen doesn’t care whether you believe in it or not, nor does it pay any mind to your opinions on whether it has arrived at an inconvenient time. The latest reports from the U.S. and abroad, which pose disconcerting questions about the unknown long-term effects of the disease on those who contract it and paint a grim picture of too-large numbers of young and otherwise healthy people affected, thoroughly crush the rumors that age and health are a guarantee of safety, and that anyone possesses an innate or certain immunity. There is one more thing.
I have listened with curiosity as people have talked about “when things will go back to normal” and wondered whose normal we were talking about. Alice Wong, founder and project coordinator of the Disability Visibility Project, cofounder of #CripTheVote, and editor of the forthcoming Disability Visibility: First Person Stories From the Twenty-First Century from Vintage Books (who recently spoke to disability rights activist and author Ari Ne’eman about her regular ventilator use for his New York Times article “I Will Not Apologize for My Needs”) puts it best: “Things have never been normal for disabled and sick folks. After this pandemic, it’s going to take a long time to recover from all the trauma, damage, and harm. Privilege is having an expectation that things will return to the same again.” As someone who lives with a chronic illness, I understand all too well the feelings that accompany the loss of what is normal to us, of what is familiar and comfortable in our lives. I also understand the allure of fantasizing about a return to things as they were.
But we can’t go back to normal. First we must help each other to survive, and then we must create something new: a normal where we are all in it together, where the disabled and chronically ill aren’t thought of as less than but equal to. Their lives—my life—are just like yours: protected and priceless. The high-risk community is already well acquainted with the vulnerability of our own bodies and the preciousness of time. We have begun having the conversations needed for all people to live with dignity and the best possible quality of life. We’re just waiting for you to join in.