“Where do you find the most joy in your life?”
This is one of the questions the Knowledge and Evaluation Research Unit at Mayo Clinic asks people living with ongoing health conditions. Their answers give a sense of each person’s purpose, reason for being, and for doing something difficult.
The answers are myriad; typical responses include “providing for my family,” “being there for my grandchildren,” or “taking care of my elderly mother.”
Skeptics may expect different answers, but these altruistic points of reference fuel coping, managing, adapting, and thriving for those chronic conditions, and make the work of being a patient possible, feasible, and eventually easy.
The ability to care for loved ones may have also helped people cope with the traumatic effects of the COVID-19 pandemic. Yet, social COVID, or the results from policies put in place to avoid and prevent contagion and the subsequent social fallout, have disrupted the ability to receive care and to fulfill the responsibility to care for others.
Research shows that people find that what matters to them, what ultimately gives them joy, and that what gives them a sense of purpose is often outside of themselves. Many report they find the most joy in their ability to make a difference in the lives of others. And that is what keeps them going.
As a doctor treating patients with diabetes over the past 18 months during the pandemic, I have seen some of my patients manage their complicated health situations well at this time. Unable to eat out due to COVID restrictions, and better able to insert exercise into their work-from-home schedules, for example, allowed them to gain better control of their blood sugar levels, lose weight, and reduce their blood pressure. This surprising improvement during lockdown has been documented around the developed world.
Other patients who are less economically privileged have not fared so well during the pandemic. Many worked longer hours and in more difficult conditions as essential workers, exposed unprotected to unmasked and unvaccinated co-workers and clients.
They said they risked their own lives because they had to “provide for my family.” Many reported coping with stress with unhealthy food and drink. Worried and anxious, they went through the phases of grief as they had to serve, feed, and protect anti-maskers, anti-vaxxers, anti-experts, and anti-reality people. And they did so, they reported, because they “had to take care of my family.”
For my patients, the question of joy—though directed at themselves–very often refers to their role in relation to others. Many report their own sense of value and purpose arising from responding effectively to the problematic situation of those in their care and making that situation better. There are many examples: babysitting the grandchildren, serving at their church, running errands for a friend, housing elderly parents who cannot live alone safely anymore.
Caring for someone else this way often demands physical interaction, unhurried conversations, and the summoning of helpful tools and services. It can often be frustrating and exhausting. Yet it is their source of joy.
The question of joy, though, is in jeopardy during the pandemic.
My patients report the pandemic has rendered the work of caring for others extremely hard and lonely. When they try to hide this aspect of their lives, sensing perhaps that these concerns do not belong in their medical consultation with me, their bodies reveal as much in high sugar and blood pressure levels, weight gain, and body aches.
The adverse effects of the pandemic move beyond the virus itself.
Since January 2020 when the Centers For Disease Control confirmed the first U.S. case of COVID-19, and until early August of this year when 73 percent of the U.S. Population had received at least one dose of the vaccine, including 90 percent of Americans over the age of 65, it seemed as if control of the virus was imminent.
After 667,000 deaths from nearly 42 million cases in this country, the CDC reports, there was hope for a break, for relaxing mandates, reopening businesses and schools, and safely coming together. This break, however, did not last long. The virus mutates as it spreads, with its Delta variant causing a rise in cases and deaths across the country, at a level not seen since February 2021.
This resurgence has required once again that people stay apart, preventing them from coming together fully, which is how people produce and consume, and it is also how people care for each other and find joy.
To the suffering caused by both acute and long COVID, there is the addition of social COVID.
Social COVID is the suffering caused by people who render themselves and others vulnerable. It is the suffering related to opting to not mask or take the COVID vaccine. It is the suffering unleashed by anti-vaxxers, anti-maskers, and those who have politicized the response to the pandemic.
Social COVID is causing great harm to everyone through an ever-expanding wave of doubt, hesitancy, distrust, and despair.
This wave rips apart the fabric of families, communities and unties the knots of networks. The pain of this rupture manifests in the angry screams at school board meetings, racial and xenophobic insults to the store cashier who politely asked the shopper to mask, the unfollows and blocks on social media sites divorcing friends on opposite sides of mandates, or the quiet and private sobbing of my older patient who will not see her daughter because she would not take the vaccine.
This social COVID is causing new forms of suffering where it hurts: at the source of people’s joy.
Once again, some of my patients’ sugar and blood pressure levels are high, their weight increasing, their wellbeing dimming. When asked, “What gives you joy?” they draw a blank.
Many pandemic lessons are learned and forgotten, but one lesson must remain etched in our collective memories.
Humans are interdependent; each person’s fate is tied to the fates of strangers, people we may not know, respect, or agree with on major issues. People whose eyes we may prefer not to meet on the street. People whose unappreciated work makes our lives more livable. All are bound to suffer for as long as any one of these persons remains vulnerable to the devastating effects of the virus, whether due to lack of access, righteousness, ignorance, or injustice.
But interdependence is not just how to fall. It is also how to rise.
An individual’s flourishing is also invisibly and inalienably tied to the flourishing of other people: each of those “eulogy virtues” – kindness and integrity, compassion, and humility – are evident in interaction and community.
In response to the pandemic, many are working to uncover, test, and validate actions that can help to respond to both acute and long COVID. The same is needed for social COVID.
It is urgent that everyone expect care when in need and be ready to respond with care when others need. This can supply the reconnection to joy, placing care – for, about, and with each other – at the center of all policies, actions, and lives.
Victor Montori is an endocrinologist and author of Why We Revolt: A Patient Revolution for Careful and Kind Care.
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