Coping in the Era of COVID-19: Lessons Learned from Cancer
Julia H Rowland, PhD, FAPOS; Senior Strategic Advisor, Smith Center for Healing and the Arts
It was early March and, unbeknownst to us, the last time our cancer caregiver support group would meet in person for months to come. We were having our regular check-in with one another. When it came time for Anne (not her real name) to speak, she paused and said, “Maybe now everyone will understand what we have been living with. Welcome to our world!” After a stunned pause, followed by a lot of head nodding, each of us realized the truth of what she had said.
My thoughts have returned often to that remark in the weeks since. The wisdom and insight of Anne’s reflection is confirmed every day. While we think the current pandemic is unique, there are millions who have found their lives similarly thrown into the unimaginable and have come out the other side. Indeed, the parallels to adapting to the Coronavirus with what it is like to live with a cancer diagnosis--in oneself or a loved one--are striking.1
First, there is incredible anxiety about the unknown. Where did this come from, this cancer, this virus? Could I have prevented it? Will I die from this? Will my loved one(s) succumb? Is there treatment that works and for whom? How successful is this in achieving a cure? Worse yet, can it come back and when? Living with uncertainty and fear of recurrence are hallmarks of the cancer experience for most. These worries are now familiar to us all in the COVID-19 era.
Further, there is the stigma that attends a diagnosis of cancer. While not universal, it remains surprisingly common. Having cancer, especially if one is under the age of 50, is often associated with a sense of isolation and loneliness. Required isolation, due to immunosuppression during and even following treatment, however, is quite common. The need for social distancing and isolation to prevent infection are common to both cancer and the Coronavirus. Sheltering alone during this pandemic is profoundly isolating. Additionally, if you happen to live in a location with a high infectious rate of COVID-19, you quickly learn the stigma of place when you try to shelter somewhere or with someone else.
The disruption to life can be overwhelming in both illnesses. The need for prolonged and frequent therapies to treat cancer can lead to the inability do to usual activities such as daily living, going to work or school, caring for a family, or running errands. Thus, putting further pressure on social ties.
As we have increasingly learned, cancer can also cause serious financial strain secondary to reduced capacity to work and/or job loss for patients and family caregivers alike. Similarly, for those who have a serious case of Coronavirus, the illness can be terrifying. The treatments can be severe and for everyone living in this pandemic, the socioeconomic disruption has been profound.
Then there is the now widely discussed concept in our post-pandemic era of adapting to the ‘New Normal.’ This is a term that has been used for over two decades in the cancer world to attempt to describe what life is like after cancer. One of the hardest realities of cancer is the realization that life, as one knew it, never returns to what it was like before cancer. At some level this may be desired, as that life and lifestyle may have contributed to disease onset. But for most, this is a difficult concept to embrace. Grief for what has been lost is important to acknowledge and process. Yet, it is often glossed over or ignored. Adapting to the ‘New Normal’ self and life can be made more difficult as family and friends often have different ideas about what that will or should look like.
Life for all of us in the wake of the Coronavirus will be forever altered. Some are already beginning to use the timeline reference b.c. and a.c. (before Coronavirus, and after Coronavirus). This chronologic frame has long been articulated by cancer survivors regarding their own illness experience: before cancer and after cancer.
Reflecting on the parallels between cancer and the effect of COVID-19, we can see that others have been in these dark places before us. Importantly, millions are here to tell the story of survival!
Despite the significant challenges of cancer, most survivors cope well with their illness.2 For those of us privileged to work with this population, we witness daily in our practice the incredible resilience of humans. The grit and grace with which individuals face rigorous therapies, disability and the threat of death is humbling. But this is not without personal cost. Those who manage to do well and live full lives beyond illness, rarely achieve this alone. There are important lessons to be learned from the over 18 million cancer survivors in the US, and more than 43 million globally, about coping in the era of COVID-19.
Coping in The Era of COVID-19
First, community is important. Having a supportive social network to buffer the demands of illness or threat of illness is vital. Individuals who can provide tangible help (shop, do errands, make meals, provide funds, etc.), emotional support (most often family and friends, but also, surprising to some recipients, colleagues and neighbors) and/or companionship (going to treatments, dropping by, talking on the phone) are all needed. Frequently these are different people. Matching the provider with the role she/he is best suited to meet helps enormously. Just as cancer is typically treated by oncology teams, patients need their own teams to join in this effort.
Ask for Help
Second, there is no shame in asking for help. Having a good support network is not the same as being able to use or draw upon this. In times of crisis, we sometimes forget to reach out to others when we are struggling, even though our network stands ready to be called upon.
One way to make this easier is to realize that finding a way for those who care about us to provide the support we need, is a gift to them. It is essentially a win-win: the requester gets the assistance she or he needs, and the person providing this support can feel she/he is making a difference. If the pandemic persists, while remaining physically distant may be necessary to protect health, our own and survivors’, we can all learn to lean in socially.
Have Compassion for Yourself
Third, being gentle with yourself is key to well-being. Letting go of the should and musts and rush to busyness and achievement is hard, but healing. Compassion for self is needed when the going is rough, whether managing through cancer or a global pandemic, or in some cases both. This also means taking time to grieve for what has been lost.
Maintain a Healthy Lifestyle
Fourth, pursing healthy lifestyle and behaviors makes a difference. We are flooded today with reminders to move, eat well and strive for a full night’s sleep. For years, the medical community and cancer survivors themselves did not focus on health after cancer; the goal was to simply survive the cure. But today we know better. Healthy behaviors are as important after cancer as they were before and may be even more important for those who will live years after care. In the face of both cancer and COVID-19, health behaviors are something we have control over, when so much feels out of control.
Appreciate the Present
Fifth, living in and appreciating the present is life affirming. Worry about the future can be all consuming in cancer, and equally during this pandemic. Find peace and hope in the moment. Even if it is just 5 minutes of mindful breathing, it helps you anchor yourself in the current moment. For many survivors, a common mantra used for coping is ‘one day at a time.’
A final lesson learned from cancer survivors is that recovery and re-entry is a long process. As many describe this “it is not over when it is over;” just because treatment ends does not mean the cancer experience ends. We have heard scientific leaders say that mastering the Coronavirus is going to be more like engaging in a marathon than a sprint. Similar to cancer, there will be multiple unknown long-term and late effects.
As we look for models that we can use to guide our collective recovery from COVID-19, we should look to the lessons learned from the wise population of those living with, through and beyond cancer whose ability not simply to survive but often thrive in the face of the challenge of illness serves as a source of inspiration.
1. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006.
2. Stanton A, Rowland JH, Ganz PA. Life after diagnosis and treatment of cancer in adulthood: contributions from psychosocial oncology research. American Psychologist. 2015;70(2):159-174.
How to Get the Most out of Your Telehealth Appointment
Amidst the COVID-19 pandemic, many clinicians have transitioned to telehealth appointments. Get the most out of your virtual visit with these tips and tricks.
COVID-Safe Winter Physical Activity Ideas: A Special Focus on Older Adults
Physical activity levels dropping around the world in response to the COVID-19 pandemic, especially for older adults during the winter. Learn tips and tricks for staying active while pandemic restrictions are in place, even as the cold weather sets in.
Strategies to Address COVID-19 Related Stressors in Healthcare Settings
Healthcare workers are facing unprecedented demands during the COVID-19 pandemic. Here are a few strategies that healthcare workers can use to manage the challenges of the pandemic.