What cancer taught me about longhaul COVID

As if the physical effects of the COVID19 virus were not bad enough, evidence of widespread incidence of Long COVID continues to mount. According to the CDC, the virus causes longterm symptoms for some survivors, including headaches, muscle and joint pain, fatigue, anxiety and multisystem inflammatory syndrome.

I believed early stories of late symptoms from COVID survivors even before sufficient medical evidence had accumulated. Sometimes it takes one to know one. I have long cancer, or what longterm cancer survivors call “late effects” — the chronic illnesses and impairments caused by cancer and by the chemotherapy, radiation, surgery and other medical procedures that saved us.

I suffered from these late effects for more than a decade following treatment for bone cancer before I even knew that a term existed for what I and other cancer survivors were suffering.

The U.S. public seems generally aware that cancer stories involving chemo and radiation include challenges such as vomiting, hair loss, fatigue and immune system suppression during initial treatment. But few understand that cancer stories often fail to reach a tidy ending and instead plod on with infertility, neuropathy, heart disease, autoimmune disorders, liver and kidney disease, anxiety, posttraumatic stress disorder and more.

Widely publicized stories of cancer feature heroic survival or tragic death — they never lurch on with depressing details of graceless, lingering maladies.

How the story gets told matters. When we focus on cancer diagnosis and treatment, community members throw fundraisers and bring casseroles. When the story features persistent, unpleasant, hardtotreat late effects, they urge you to be grateful for your survival, because their mother, big brother or best friend’s cancer story ended with death.

No one brings a casserole.

For 20 years, I suffered recurrent infections and reconstructive surgeries on my leg before opting for an aboveknee amputation. Thirtytwo years in, I still cope with chronic pain, dry mouth, constipation, fatigue and challenges of living with a prosthetic leg.

Given my own experiences as a survivor, I can project the plot of many longhaul COVID19 survivors’ stories: they will have trouble navigating their insurance companies and physician’s offices with their odd symptoms. Workplaces — small businesses, corporations and most of the education, nonprofit and service industries as well — will be largely intolerant of Long COVID survivors’ ups and downs, weekslong bouts of intense illness followed by weeks during which longhaulers could be productive if they were allowed to work to their capacity.

Many won’t be. They will quit or be fired.

Sympathy will run low when longhaulers still cannot take all their turns in the carpool, juggle several major projects at work, or keep up with the kids. Their story will get boring — short on dramatic cures and touching death scenes and long on unsolvable problems.

Wellmeaning liberals will tell longhaulers they should be grateful to be alive. Think of all those less fortunate who perished during the pandemic! Fiscal conservatives will accuse the sick of exaggerating their symptoms and support laws to eliminate insurance coverage for preexisting conditions. Both sides will prefer the miraculous survival and horrifying loss stories that dominate the news cycles and viral Facebook posts.

People with Long COVID will suffer from their symptoms, of course. But they will suffer just as much from the societal invisibility, stigma and lack of financial and social resources that come from having an illness story that resists dramatic closure.

Of course, Long COVID is not the first chronic illness story that the general public has found too dreary to rally around. Millions of people living with chronic illnesses already have similarly ambiguous endings to their marginalized stories.

As a long hauler, I found it helpful to purposefully craft stories for different audiences — a list of symptoms, surgeries and medications for my doctors; lines about my sick leg that didn’t work anymore for small children; a matteroffact summary emphasizing my effective coping strategies for new coworkers and acquaintances; a blunt and vulnerable version for other long haulers who can appreciate my tale.

The COVID pandemic has been, and continues to be, a tragic story. At the same time, this moment also provides opportunities to challenge old, dominant culture beliefs and tell some new stories about who deserves access to health care and social safety nets, and the possibilities of living well in the midst of illness and disability.

Laura Ellingson is a 32year bone cancer survivor, a narrative health communication researcher, and the Patrick A. Donohoe, S.J. Professor of Communication at Santa Clara University. She is writing a memoir about the late effects of living with cancer.