“I lived my life better when I was sick,” says Leslie Gauthier, who was diagnosed with an aggressive T cell lymphoblastic leukemia in November 2011, just a few months after graduating from college. “I didn’t take anything for granted. I said what I needed to say. And I kept positive people around me. That’s a model for how I want to live now, and I feel guilty when I don’t do that.”
No matter what kind of cancer you’re diagnosed with, coping with its emotional toll can continue long after active treatments are over. The aftermath can lead to a tangle of complex feelings. For those who enter the world of cancer survivorship, guilt is often one of those emotions.
After more than two years of chemotherapy, Leslie says guilt is a part of her life that she’s working to overcome.
Cancer survivors may experience a range of guilty feelings in addition to what is considered classic survivor guilt — surviving the same thing that someone else dies from. Some people may feel guilty about disrupting the routines of friends and family members, especially those who had to give up extensive amounts of time to provide care. Others may feel guilty about not doing everything they can to live the best life possible after surviving cancer.
“Often when people are diagnosed with cancer, they contemplate their own mortality and vulnerability for the first time,” says Kimarie Knowles, a Memorial Sloan Kettering clinical social worker who works with cancer survivors. “The feelings of powerlessness or helplessness that can be triggered in the face of illness are overwhelming. Guilt can be a way to protect us from those feelings, because it’s something we feel we can control.”
Leslie, who is now cancer free, participated in a support group for young cancer survivors led by Ms. Knowles last year. She developed close bonds with others in that circle. “We talk all the time about how it’s important to lead a life that’s meaningful and full of joy,” she says. “I’ve been given this time, and doing things that are meaningful — including connecting with others who are going through cancer — is the best way to combat the guilt.”
Painful Feelings Triggered by Trauma
Cancer patients may develop special attachments to others who are being treated at the same time they are. Even if they never speak to them, they often connect emotionally to other people they regularly see in treatment and in waiting rooms. One sign of survivor guilt, Ms. Knowles says, is when patients try to minimize or dismiss their own cancer experience because they believe other people are worse off than they are. “They may say, ‘I only had surgery, while he had surgery, chemotherapy, and radiation,’” she notes.
Survivors coping with these emotions often feel that they need to justify their existence or that they don’t deserve to be here, Ms. Knowles says. This often speaks to the feelings of powerlessness and grief related to their own cancer experience. “We as social workers try to look deeper and understand what people are struggling with,” she says. “Once we help them recognize their feelings connected to the guilt, they often have an aha moment, which helps them to begin moving past it.”
“These feelings can come out anytime someone is looking at issues of fairness,” says MSK clinical social worker Susan Glaser. “People who have experienced trauma are comparing themselves to others. Survivors look at other people who did everything ‘right’ but died anyway and try to make sense of that.”
Recognizing Emotions and Moving Forward
Aside from her support group, Leslie has connected through social media with a young woman who currently has leukemia, sending her encouraging messages, singing a song for her on a video, and even mailing her a care package of items that friends had given Leslie during her own treatment. “Reaching out to her makes me feel better,” she says. “The worst thing for me would be feeling like I was sitting on my hands and not doing anything to help this other person.”
Leslie has also become active in two groups that support cancer patients and survivors: Fabulous and Fighting, which helps women going through cancer treatment by providing clothes donated by designers, and True North Treks, which takes young adult cancer survivors on free outdoor adventures that help them connect with nature.