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Survivor guilt commonly affects individuals who have lived through a traumatic experience that took the lives of others, such as war, a natural disaster or a prolonged illness such as cancer, experts say.
“Sometimes when I still struggle, when I lose a friend, I have to let myself feel the guilt but know that if I stay there too long it isn’t healthy, and it isn’t honoring the friend I lost.” –Karen Shanahan
“Guilt can be multifaceted,” says Vicki Kennedy, a licensed clinical social worker and vice president of program development and delivery with the Washington, D.C.-based Cancer Support Community. “On one level, there is a sense of guilt that comes from others dying while you survived. There can also be feelings of guilt around the whole cancer experience, such as, ‘Am I a burden to my family?’ So there are many components to it. But it’s completely normal.”
Among patients with cancer, anecdotal reports suggest that women are more prone to developing survivor guilt than men, and that older patients, in general, usually have better coping mechanisms, says Jennifer Klemp, director of cancer survivorship at the University of Kansas Cancer Center in Kansas City and associate professor of medicine in the Division of Clinical Oncology there. “They tend to have met more of their life goals,” she explains. “When you look at the data, younger women have a harder time with coping and developing strategies so they can function to the best of their abilities.”
Common indicators of survivor guilt include depressive symptoms, anxiety and rumination. “Obviously, those symptoms can somaticize to poor sleep, concentration and job performance, and disruption of personal relationships,” Klemp says.
Survivor guilt is considered a symptom of someone’s reaction to a situation and does not necessarily rise to the level of a pathological disorder or diagnosis, adds Michelle B. Riba, a professor and associate chair in the Department of Psychiatry at the University of Michigan, and director of the PsychOncology Program at the University of Michigan Comprehensive Cancer Center. Still, it’s time to seek help when survivor guilt gets in the way of everyday activities, such as sleeping and eating, for more than two weeks. “If a person is not doing well with it and also has depression and other issues, they may be evaluated by a doctor or a therapist,” she says.
While large cancer centers often survey patients via questionnaire about whether they are experiencing distress, the forms do not ask specifically about survivor guilt, Riba continues. However, if patients report that they are experiencing distress and then accept help in dealing with it, counselors are likely to sniff out the problem. Counselors who work with cancer patients are sensitive to the signs, including frequent comments about other patients who did not survive, expressions of sadness or guilt, or an inability to enjoy life because others are suffering, Kennedy says.
The anxiety, depression and other issues commonly associated with survivor guilt can have an adverse effect on a cancer patient’s treatment and recovery.
“When someone you have seen weekly during chemotherapy dies, some people may question whether they are worthy of continuing,” says Donna M. Pisano, a psychologist in private practice in Flagstaff, Ariz., and a volunteer with the Cancer Hope Network. “They may wonder, ‘Why am I here and they are not?’ Unfortunately, I have heard of people not showing up for chemo anymore, or becoming so negative that their chemotherapy side effects worsen.”
“What is really influential is how much psychosocial or life-role disruption (such symptoms) can have,” agrees Klemp. “Severe depressive symptoms or the somatization of psychosocial issues into physical issues can disrupt the day-to-day function of patients getting to treatment on time or taking their medications. Addressing psychosocial issues, in particular the stages of grief, can definitely impact the physical piece.”
Survivor guilt can also affect a cancer patient’s relationship with family, friends and health care providers, adds Klemp. Depression or anxiety, for example, may cause a patient to shut down, or exhibit anger or frustration. “As with any other type of psychosocial disruption of life, survivor guilt can affect a patient’s depressive symptoms, anxiety, all of that, which affects their relationships,” Klemp notes. “And people get burned out by that. People try to be helpful, but it is often hard to meet expectations or needs, so survivor guilt can obviously affect the family system.”
Caregivers can help, but sometimes need direction from the survivor, Klemp says. One concrete way to help is by ensuring that survivors have access to support organizations or supportive therapy.
Meanwhile, those very caregivers, along with other family members, might also find themselves experiencing survivor guilt. Older family matriarchs are more likely to suffer survivor guilt when younger family members develop cancer, Klemp says.