Getting past the shock of a cancer diagnosis and through all the difficulties of treatment is a hard-won accomplishment for cancer survivors. Unfortunately for some, lingering guilt is another unwelcome side effect. A recent small survey of lung cancer patients found that more than half had negative feelings about surviving their disease when others did not. Guilt can also seep in when people believe they’re a burden to family members, blame themselves for their diagnosis or feel down instead of “lucky” as others expect.
[See: 7 Things You Didn’t Know About Lung Cancer.]
Sibling Survivor
Michael Levin, 71, an Atlanta business owner, has suffered more than his share of health problems. First, in 2007, he was diagnosed with right-sided lung cancer. Within two years, the cancer spread to his brain, causing four tumors requiring ultra-precise radiosurgery. Then, about two years ago, he developed a second primary lung tumor, this time on the left side. Between those bouts of cancer, he had a heart attack. “But I’ve survived them all and have done well,” Levin says. “I am a very happy person, fully engaged in life.”
With all Levin endured, he also felt a persistent sense of self-reproach. “I had a sister who was three years older than I was,” he says. “Five months after I was diagnosed, she was diagnosed with the same cancer at the same location. Everything was exactly the same.” But there was a big difference: His sister’s cancer was inoperable. Less than a year later, she died. “I feel guilty that I survived and she didn’t,” he says. “I just feel a great sense of sadness that she didn’t make it.”
Many people who know Levin say he should consider himself lucky. “You have nine lives,” he often hears. With two adult children to run the family in his absence, he was able to devote himself entirely to coping with cancer and recuperating. But in the chemo infusion clinic, he’d look around and see others, like young women with breast cancer, struggling to work and support families. “That gave me the guilts,” he recalls.
Getting over guilt was a gradual metamorphosis, Levin says. While his sister was alive, acting as one of her caregivers helped. About two years later, Levin became active in the nonprofit Lung Cancer Alliance. Giving of himself helps “enormously,” he says, with a sense of making a positive contribution. “You also feel like you’re making yourself worthy of the efforts that doctors, technologists and nurses made on your behalf,” he says.
Last year, the Lung Cancer Alliance surveyed 108 lung cancer survivors online. Participants answered a series of questions on a scale used to assess guilt and also made individual comments. “Survivors repeatedly referenced the death of someone known to them, which kind of caused some feelings of guilt,” says Tara Perloff, senior manager of support services.
Another dimension was a sense of depression associated with surviving lung cancer. “It was that opposite end of the coin,” Perloff says. “Most people, when they’re diagnosed with cancer, say, ‘Why me? Why did I get cancer?’ Survivor guilt is, ‘Why not me? Why didn’t I die?'”
Other respondents, for instance those diagnosed in early stages, felt bad that their treatment course was less difficult than that of other patients, Perloff says. Some blamed themselves for having been smokers.
In focus groups that followed the survey, survivors were happy to open up about their feelings. People would say, “Thank you; I felt like I was the only one,” or “I felt like I was crazy,” Perloff says. Talking provided relief to guilt-stricken survivors who realized that they weren’t alone after all.
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Relying on Others
For Angela Long of Sarasota, Florida, being diagnosed with stage 2 breast cancer in 2004 brought “instant” guilt. “My kids were real little,” she says. “Once cancer hit, I couldn’t be Mom full time anymore. Now I was the patient. I had to take care of myself and treat the disease. So I relied really heavily on my husband. He stepped up and started taking on a lot more responsibilities with the kids, especially when I was sick or recovering from treatment or surgery.” Friends pitched in too. While Long appreciated their efforts, accepting rather than giving help was a tough transition.
With more deep-seated guilt, Long recalls a fellow parent with whom she used to attend school functions for their small children. Her friend developed the same type of cancer, but sadly, she died of the disease. While recently attending her own son’s high school graduation, Long was reminded of her friend’s daughter, who was also graduating. “It still makes me choke up,” she says.
Survivor guilt is less disruptive for Long than it used to be. “I’ve learned to cope with it more,” she says. “I understand it more. It’s been a process.” She’s immersed herself in helping others, including working as a patient and survivor advocate and hosting a website with information on breast cancer.
Realizing that people offer help willingly is another way to reduce survivor guilt. “This is a gift that they’re giving you because they want to do something,” Long says. “It makes them feel better to do these things for you. They can’t fix your disease, but they can make your life a little easier for you.”
[See: How Social Workers Help Your Health.]
Part of the Process
It’s possible to overstate the prevalence of cancer survivor guilt, says Bradley Zebrack, a professor of social work at the University of Michigan School of Social Work. He makes a distinction between the emotion of feeling guilty and the cognitive process people use to draw meaning from their cancer experience.
“It’s certainly a problem for people who feel it — I don’t negate that,” Zebrack says. But, he says, survivors shouldn’t feel that guilt is inevitable. Also, he adds, “If it gets overstated, then care providers and clinicians might start to think we have to do something about it. We have to quote-unquote treat it.”
Choosing the right type of therapy — if any — depends on whether guilt is disrupting other elements of survivors’ lives, Zebrack says. “There are some people who become paralyzed by the guilt,” he says. “Or become very depressed.” If so, depression-specific treatment would be needed.
For survivor guilt, Zebrack says, a talk therapy called meaning-making psychotherapy can help. As patients process what cancer means to them, he says, therapists help them shift their story in a more positive direction: “It’s this recognition that, ‘Wow, I must have survived cancer for a reason. Now let me figure out what that reason is.’ It can be really powerful work.”
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Overcoming Cancer Survivor Guilt originally appeared on usnews.com
