As anyone who lives with knows, life in a holding pattern is . During an illness flare, each day bleeds into the next as we wait and wait and wait for things to get better. It’s tiresome and boring. As if that’s not enough, we are acutely aware that things could get worse. Our health could slide fast, leaving us longing for the boredom over pain and terror. mixes with tedium to produce an unwelcome cocktail.
We’re all in that space these days. We’re fatigued, agitated, and lonely. We long for normalcy - to go to work, to celebrate milestones together, to be part of the humming of the world. We want to walk down the street without dodging fellow humans, to share a meal with friends at a restaurant we love, to go to the theater or museum or park. We wish to live freely, as we once did.
Some of my chronically ill clients have remarked that they’ve felt an unusual sense of camaraderie during these weeks of quarantine. “I am used to being left behind while everyone else lives their lives,” one young woman told me. For her, for me, and for many of us who live with chronic illness, a surprising benefit of this quarantine has been that we have a lot of company. We are used to watching the world going on around us from behind a heavy sheet of glass separating us from healthy people. As we’ve looked out at the world these past several weeks, though, we have realized that life during this pandemic has stopped - not just for us - but for everybody. Ironically, it took universal isolation for chronically ill people to feel more connected to everybody else.
As society takes its first steps to re-open this month, people who live with chronic illness stand to lose this sense of shared experience. Healthy people are preparing to resume their lives while those who have chronic illnesses are being advised to stay in . As the latest Federal guidelines put it: “All vulnerable individuals should continue to shelter in place. Members of households with vulnerable residents should be aware that by returning to work or other environments where distancing is not practical, they could carry the virus back home. Precautions should be taken to isolate from vulnerable residents (https://www.whitehouse.gov/openingamerica/)." Upon reading this, I picture a room in a tower, with healthy family members leaving meal trays and the occasional “cheer up” note outside the locked door. Not only are chronically ill people to be isolated from the world; we’re also to be isolated from family who interact with the world. This is not a welcome scenario.
The separation between the healthy and the ill has diminished during quarantine. While people with pre-existing conditions have been at greater risk of dying from , the virus has not spared the healthy. As we’ve all shared the risk of grave illness, society has taken precautions designed to keep all of us well. In the quest to return to “normal”, governmental policy and procedures are re-sharpening the distinction between the healthy and the ill. The healthy are to go forth and live in the world; the “vulnerable people” (the chronically ill and elderly) are to stay home.
I’m not looking to argue about whether and when we should re-open the country. What I am looking to do is to change the way that chronically ill people are viewed as society grapples with this process. It’s not okay to expect us to drop out of life - not ever and especially not now, when we’ve seen the whole world accommodate illness. In these last months, we’ve managed to change the very fabric of work, school and in an effort to reduce harm. Can we keep using technology to reduce harm to those living with chronic illness? As we plan for the future, can we add to our guidelines that “vulnerable people” will not be tossed on the shelf, but rather will be integrated into daily life as we move forward?
This would look like chronically ill students participating in school via computer. We did this on a large scale; we can continue to do it for those still sheltering in place. This would look like chronically ill employees working from home and tied to the office remotely, again via technology. We know how to do this, and we can continue to do it. This would look like zooming people at home in to parties, dinners and other gatherings. Again, there’s no excuse not to do this, as we’ve been using this option for months. This also would look like families with chronically ill members assessing risk and having options for working at home in order to enable chronically ill people to continue to have contact with their loved ones. It’s cruel to imagine otherwise. Finally, this would look like having a seat at the policy-making table. We’re here and we need to be heard.
If history is our guide, nobody is going to offer us these accommodations on a silver platter. We’ll have to remind our employers, our teachers, our co-workers, our classmates, and even our friends that we want and deserve to participate in society as it re-opens. We’ll have to be determined, loud and insistent on our right to be included. We’ll have to remind people that the whole world operated over the computer for months during the pandemic and that chronically ill people can continue to stay connected in meaningful ways from their homes.
COVID-19 has brought home to us how interconnected we all are. Chronically ill people are a valuable part of this web of life. As we remake the world in the the wake of this virus, let’s insist that we matter just as much as people who have the privilege of health.
If you or a family member live with chronic illness, how are you planning to navigate re-opening?