The Secret Side Effect of Survivorship: Survivor's Guilt

Vickie Shepherd received a stage 1a ductal carcinoma in situ diagnosis in December 2013, mere months into her new marriage. Immediately following surgery to remove the cancer, she began the new year with 37 rounds of radiation over the course of seven and a half weeks, after which she was dubbed a survivor.

In addition to getting monthly checkups to keep an eye out for recurrence, Shepherd found comfort in attending events that surrounded her with other patients and survivors. She attended Susan G. Komen races near her hometown of Amarillo, Texas. She joined 24 Hours in the Canyon Cancer Survivorship Center, a community center available for residents of the Texas and Oklahoma panhandles, where she took exercise classes and group counseling sessions with people who could relate to her trauma. She found this sense of community invaluable in helping her navigate life after treatment, but she never anticipated the sense of guilt that would also accompany her survival.

“It’s almost self-induced,” Shepherd says. “I keep going to these places because they are places where people understand you. They can be encouraging, and yet you keep seeing these people who are so much worse than you, and you feel bad.”

Shepherd suffers from survivor’s guilt. Sometimes referred to as the “secret burden of cancer survivorship,” survivor’s guilt is a phenomenon defined as experiencing guilt for surviving a life-threatening situation when others did not.

“You almost feel like, ‘Oh my gosh, what is my big deal? I have nothing wrong, and these people are sick, sick, sick,’” Shepherd says. “It just kind of attacks you.”

Dealing with complex emotions

Most often a reaction to coming safely through a traumatic event such as a car crash, war, natural disaster or losing a loved one to suicide, survivor’s guilt is also common following a cancer diagnosis. A study published online in February 2019 in the Journal of Psychosocial Oncology showed that in a survey of more than 100 lung cancer survivors, 55% reported experiencing survivor’s guilt and 63.9% scored above the mean on the survivor’s guilt scale.

However, this emotional side effect of cancer is rarely discussed, leaving those who are affected inadequately prepared to deal with the complex emotions it can bring.

“It is hard for patients,” says Pam McMillan, a registered oncology nurse specializing in adult survivorship at Harrington Cancer and Health Foundation. “Some patients feel ungrateful because, they say, ‘the doctor saved my life, but here I am having this guilt of living.’ So they don’t always bring it up. It’s one of those things that’s kind of pushed under the rug.”

Further complicating the issue, survivor’s guilt doesn’t present the same way for every person. Some survivors experience the emotions post-treatment, whereas others begin to grapple with the feelings while still in active treatment. “Survivor’s guilt can be triggered by many different things,” says Julie Larson, former director of young adult programming at CancerCare and a licensed clinical social worker in private practice. “It’s not just one thing.”

Many survivors report feeling guilty over receiving a lesser diagnosis or going through a less rigorous treatment plan than someone else. “Even as soon as diagnosis, some patients start to think, ‘Well, maybe mine isn’t so bad,’” McMillan says.

Others feel guilty about having a strong support system when others aren’t as fortunate, being a burden to their caregivers or even learning that they are BRCA positive, knowing that their loved ones may be affected by some- thing similar down the road.

Joe Ruiz learned he had renal cell carcinoma, a type of kidney cancer, in November 2016. After removing the left kidney, his doctor felt confident that the cancer was eliminated. But after a December follow-up appointment with an oncologist, Ruiz was hit with unexpected news.

“I was told that it was stage 3, there was a greater than 50% chance of it coming back, and there was nothing we could do,” says Ruiz, who lives in Lubbock, Texas. “It just blew me out of the water.”

Ruiz started getting CT scans every three to six months. In October 2017, he learned another piece of devastating information: Two nodules were in his left lung.

“I have to look at my life in six-month segments. Meanwhile, I miss out on a lot of things because I don’t want to get myself overly involved, and I don’t want other people to get overly involved with me,” Ruiz says. “My mom died of cancer, and I saw everything she went through ... as well as what it put my dad through (as her caregiver). But I also can’t say that I feel sorry for myself, either. (I don’t have to look very far to) see people very much worse off than I am.”

Even though cancer has left him feeling isolated, withdrawn and sapped of energy, Ruiz considers himself lucky because he hasn’t had to undergo chemotherapy or radiation therapy. This, too, is a normal reaction to survivor’s guilt: a complicated cocktail of emotions, experienced by both Shepherd and Ruiz, that manifests itself in two ways.

Putting a label on it

The various symptoms of survivor’s guilt include flashbacks; irritability, anger, or fear and confusion; trouble sleeping; reduced motivation; and headache, nausea or stomachache.

Jennifer Bires, executive director at Smith Center for Healing and the Arts, a Washington, D.C.-based nonprofit organization, says it’s important for people to pay attention to their feelings, then try to identify their cause in a supportive environment. “Anytime we can put a label or name on something, it allows people to voice it and know that it’s normal,” says Bires, who is a licensed independent clinical social worker with certification in oncology. “If it’s not named, sometimes people think that they are the only ones feeling this way; then they’re afraid to bring it up. But talking about it is the first step to managing those feelings.”

That discussion can be difficult for survivors. When Shepherd mentions her feelings to friends or family, she is sometimes met with confusion or outright dismissal. “It’s very hard to tell just anybody about it because you feel guilty, and you don’t want somebody to know your weakness,” she says. “They might just go, ‘Oh, whatever, you’re silly.’ But you also don’t want someone to think: ‘Do you not feel blessed?’ Because sure, I feel blessed, but I also feel guilty.”’

Larson emphasizes that survivor’s guilt does not negate feelings of gratitude or appreciation; it is never one emotion or the other. Still, as Shepherd explains, identifying feelings of guilt can bring on feelings of shame, causing further isolation.

The stigma surrounding survivor’s guilt seems to be lifting, thanks to a nationwide shift in the way the public thinks and speaks about mental health in general. Larson has noticed that more conferences are requesting her to speak on the topic and oncology professionals are starting to recognize it, even if that awareness hasn’t fully permeated into the public just yet.

To help survivors feel less alone, cancer care and survivorship centers have become sanctuaries where people can surround themselves with others who can relate and understand, making it easier to acknowledge and discuss those uncomfortable topics.

For instance, CancerCare, the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer, offers online and in-person support groups for survivors.

“If you have a survivorship center of any kind near you, it is so helpful,” Shepherd says. “It’s hard to go to the first time ... but it helps you to be able to talk about it.”

Ruiz agrees: “The survivorship center is the best thing I’ve ever done for myself.”

In addition to group sessions, many survivorship centers offer activities, such as exercise, art and nutrition classes. Smith Center focuses on visual arts, journaling, dance and yoga, as well as nutrition, traditional support groups and cancer health retreats. Many survivors describe these activities as “life changing,” helping them to heal emotionally.

Giving back to others also shows promise in combating survivor’s guilt. “Many of the survivors I work with, on some level, are working to find some meaning in this crazy cancer experience,” Larson says. “They are wondering, ‘Why has this happened to me, and what do I make of it?’”

Survivors need not start an organization, run every 5K or gather thousands of dollars in fundraisers, Larson stresses, nor must they give back to the world of oncology.

However, guilt can be a powerful reminder that survivors have been given a second chance, and they can use it to make a meaningful difference in the world moving forward.

Getting past the guilt

When it comes to navigating life during and after cancer, it is important to recognize that no two stories are the same. “Every cancer journey is (that person’s) own book to write,” McMillan says. “We can’t compare notes (with) other survivors. Your story is unique, and we have to be grateful for the good things we have.”

Professionals like Bires, Larson and McMillan agree that, after acknowledging guilt and accepting that related feelings are valid, people suffering from survivor’s guilt should seek out a support system, engage in healthy activities and channel their feelings into a positive way of giving back.

It’s also important for survivors to extend themselves grace. “If you view surviving cancer as a gift and you start to wonder, ‘Well, what do I do with that gift?’ what kind of pressure does that put on you to constantly live life to the fullest and find meaning?” Bires asks.

When survivors have an off day, instead of dismissing or being ashamed of those feelings, simply acknowledging and accepting them can go a long way.

“When we beat ourselves up over having those heavier and darker feelings, in some ways, that’s not helping,” Larson says. “Like any feeling, it deserves attention. It’s amazing how much healing just even acknowledging something and accepting it can give ... just by talking about it and feeling understood. It doesn’t mean it takes away the discomfort, but at least it tells you that what you’re feeling makes a whole lot of sense.”

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