We need to talk about survivor guilt: the emotion survivors may experience after learning someone died of cancer. While less troublesome than fear of recurrence, it unsettles enough patients to merit our attention. We'd do well to find a better label, one that serves survivors who experience it and caregivers and clinicians trying to respond with compassion.
On-and-off since my first remission, I've experienced so-called survivor guilt as a vague and fleeting feeling. Recently, while anticipating the launch of my latest book and the arrival of my first granddaughter, waves of it became more intense and frequent, which wasn't surprising since my sister in hospice was never far from my thoughts.
The waves of emotion began while packing to visit her after three and a half years of being her confidante and co-survivor, helping her navigate her medical care and her hopes. I was sliding a wrapped gift inside one of my shoes and wracking my brain for what else I could bring to her. Feeling awash in the yinyang of my sister's endings and my beginnings, my chest tightened, and a few large tears plopped into my suitcase before a constriction of my throat caused me to cough up a prayer of thanks for the joys in my life.
Reflexive gratitude was my well-practiced response. Decades earlier, a wave of emotion after the cancer death of a friend had prompted me to reflect briefly on the feeling everyone called survivor guilt. Convinced I hadn't done anything wrong and wanting to use the feeling positively, I committed to "never allow myself the luxury of feeling guilty about my good fortune, because the most powerful way for me to honor [those who died] ...is to delight wholeheartedly in all that is right in my world (Guilty. Oncology Times 2008;30(2):38)."
Expressing gratitude is a logical and healing response to others' death. Yet for whatever reasons (and the possibilities are endless), survivors may experience a disquieting sense of guilt. Even a concerted focus on gratitude may not resolve the discomfort. We can help such patients by addressing survivor guilt as a common symptom needing attention.
The first order of business is to address the "guilt" part. Guilt is defined as the unpleasant emotion that arises when you've done something wrong. Clearly patients haven't done anything wrong by surviving: "Your survival can't hurt any other patient's chance." Period.
Patients may feel guilty for doing something wrong, such as making plans for next year and continuing their daily routines as if nothing in the world has changed. You can offer the notion that embracing life with heightened gratitude and gusto is a meaningful way to honor those less fortunate.
Patients may accept they're not guilty of doing anything wrong, yet they worry they're feeling something wrong, such as relief it's not them or happiness about a job promotion. Bringing that worry out in the open may help: "No thought or feeling is wrong, unless you act on it in unacceptable ways." Patients need to know it's okay to have boorish thoughts, such as, "Well, he did smoke like a chimney," and it's fine to feel glad about secondary gains, such as a new job opening.
The label, survivor guilt, does patients a disservice by focusing on guilt and, more disturbingly, by reinforcing any tendency toward self-blame and shame. The idea crossed my mind to take a page from my work on hope and call the feeling "survivor false guilt." Analogous to false hope, false guilt can be defined as a real feeling linked to a misguided belief-the belief you've done something wrong when, in fact, you haven't. Tacking on "false" may be all patients need to dismiss the unpleasant feeling and move on.
Or not. When I tried it on for size, "survivor false guilt" didn't work. The clumsy term missed the layers and layers of sadness. Many survivors feel sad for the person who died and sadness for that family, which may trigger flashbacks of their own anticipatory grief over the same losses they once feared for themselves and their own family. Empathic sadness for anyone suffering from cancer seems to be a common thread that may cause a survivor to bawl at survivorship celebrations or walk around in a daze after the cancer death of someone known only by a screen name on a blog.
Mixed with patients' sadness may be a humbling existential angst of "Why me? Why did I survive?" That mystery tends to feel bigger and more tangible after cancer. Primal issues of unworthiness, vulnerability, and powerlessness may surface. With the unfairness and seeming randomness of life center stage, a sprinkling of fear of recurrence may add zing to the emotional soup.
If not "survivor guilt," what can we call this complex emotion? Especially since it's hard to know what to feel after the death of someone from cancer, it would be nice if the sound of the label fit the feeling, whatever a survivor's unique blend of sadness, angst, humility, fear, and false guilt.
I've been trying out "saditude" with other survivors. They don't find it silly and like how it encourages them to think about their attitude toward life, inspiring them in forward-looking and empowering ways. The reason I like "saditude" is how it captures the sadness that may give rise to gratitude. If nothing else, the absence of "guilt" in the label may help minimize the burden of undeserved guilt and shame.
It's sad and unsettling for survivors when other patients die. Calling the feeling "survivor guilt" unnecessarily adds to their discomfort. For now, unless you have a better suggestion, let's try calling it "saditude" to help survivors adjust to the news and choose an attitude of gratitude and hope.
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As an internist and cancer survivor, Wendy S. Harpham, MD, FACP, offers a unique perspective on oncology practices. Visit http://bit.ly/2p7B1OM to read more articles!