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A Better Name for Survivor Guilt By Wendy S. Harpham, MD, FACP

e need to talk about survivor guilt: the emotion survivors may act on it in unacceptable ways.” Patients need to know it’s okay to experience after learning someone died of cancer. While less have boorish thoughts, such as, “Well, he did smoke like a chimney,” Wtroublesome than fear of recurrence, it unsettles enough pa- and it’s fine to feel glad about secondary gains, such as a new job tients to merit our attention. We’d do well to find a better label, one opening. that serves survivors who experience it and caregivers and clinicians The label, survivor guilt, does patients a disservice by focusing on trying to respond with compassion. guilt and, more disturbingly, by reinforcing any tendency toward self- On-and-off since my first remission, I’ve experienced so-called sur- blame and shame. The idea crossed my mind to take a page from my vivor guilt as a vague and fleeting feeling. Recently, while anticipating work on hope and call the feeling “survivor false guilt.” Analogous to the launch of my latest book and the arrival of my first granddaughter, false hope, false guilt can be defined as a real feeling linked to a mis- waves of it became more intense and frequent, which wasn’t surprising guided belief—the belief you’ve done something wrong when, in fact, WENDY S. since my sister in hospice was never far from my thoughts. you haven’t. Tacking on “false” may be all patients need to dismiss the HARPHAM, MD, The waves of emotion began while packing to visit her after three unpleasant feeling and move on. FACP, is an internist, and a half years of being her confidante and co-survivor, helping her cancer survivor, and author. Her navigate her medical care and her hopes. I was sliding a wrapped gift books include newly inside one of my shoes and wracking my brain for what else I could It’s sad and unsettling for survivors published Healing bring to her. Feeling awash in the yinyang of my sister’s endings and Hope, as well as my beginnings, my chest tightened, and a few large tears plopped into when other patients die. Calling the Diagnosis Cancer, my suitcase before a constriction of my throat caused me to cough up After Cancer, feeling “survivor guilt” unnecessarily When a Parent Has a prayer of thanks for the joys in my life. Cancer, and Only 10 Reflexive gratitude was my well-practiced response. Decades earlier, adds to their discomfort. Seconds to Care: a wave of emotion after the cancer death of a friend had prompted Help and Hope for me to reflect briefly on the feeling everyone called survivor guilt. Busy Clinicians. She Convinced I hadn’t done anything wrong and wanting to use the feel- Or not. When I tried it on for size, “survivor false guilt” didn‘t lectures on “Healthy Survivorship.” As she ing positively, I committed to “never allow myself the luxury of feeling work. The clumsy term missed the layers and layers of sadness. Many notes on her website guilty about my good fortune, because the most powerful way for me survivors feel sad for the person who died and sadness for that fam- (wendyharpham. to honor [those who died] …is to delight wholeheartedly in all that is ily, which may trigger flashbacks of their own anticipatory grief over com) and her blog right in my world (Guilty. Oncology Times 2008;30(2):38).” the same losses they once feared for themselves and their own fam- (wendyharpham. Expressing gratitude is a logical and healing response to others’ ily. Empathic sadness for anyone suffering from ­cancer seems to be a com/blog/), her mission is to help death. Yet for whatever reasons (and the possibilities are endless), sur- common thread that may cause a survivor to bawl at ­survivorship cel- others through the vivors may experience a disquieting sense of guilt. Even a concerted ebrations or walk around in a daze after the cancer death of someone synergy of science focus on gratitude may not resolve the discomfort. We can help such known only by a screen name on a blog. and caring. patients by addressing survivor guilt as a common symptom needing Mixed with patients’ sadness may be a humbling existential angst of attention. “Why me? Why did I survive?” That mystery tends to feel bigger and The first order of business is to address the “guilt” part. Guilt is more tangible after cancer. Primal issues of unworthiness, vulnerabil- defined as the unpleasant emotion that arises when you’ve done some- ity, and powerlessness may surface. With the unfairness and seeming thing wrong. Clearly patients haven’t done anything wrong by surviv- randomness of life center stage, a sprinkling of fear of recurrence may ing: “Your survival can’t hurt any other patient’s chance.” Period. add zing to the emotional soup. Patients may feel guilty for doing something wrong, such as making If not “survivor guilt,” what can we call this complex emotion? plans for next year and continuing their daily routines as if nothing in Especially since it’s hard to know what to feel after the death of some- the world has changed. You can offer the notion that embracing life one from cancer, it would be nice if the sound of the label fit the feel- with heightened gratitude and gusto is a meaningful way to honor ing, whatever a survivor’s unique blend of sadness, angst, humility, those less fortunate. fear, and false guilt. Patients may accept they’re not guilty of doing anything wrong, I’ve been trying out “saditude” with other survivors. They don’t yet they worry they’re feeling something wrong, such as relief it’s not find it silly and like how it encourages them to think about their at- them or happiness about a job promotion. Bringing that worry out titude toward life, inspiring them in forward-looking and empowering in the open may help: “No thought or feeling is wrong, unless you 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 grati- tude and hope. OT

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18 Oncology Times May 5, 2018