How Do You Deal With “Survivor Guilt”?
“Survivor guilt” is a not uncommon reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.
Survivor guilt was first identified during the 1960s. Several therapists recognized similar conditions among Holocaust survivors, including anxiety and depression, social withdrawal, sleep disturbance and nightmares, physical complaints and mood swings.
When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).
Cancer-related survivor guilt
It may come as a surprise to those who have not experienced cancer, to learn that many of us suffer a sense of “survivor guilt” too. Cancer-related survivor guilt is a complex, multi-faceted emotion. Not only can we feel guilt at “surviving” when others have not, but we may also feel that because we have been diagnosed with an earlier stage disease, or that we didn’t have to go through chemotherapy we are somehow less “deserving” of sympathy.
We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children.
We might also feel guilty that we weren’t the “perfect” cancer patient (whatever that is!) or that cancer wasn’t the wake-up call it was “supposed” to be in our lives. I’ve had to use a lot of [“] in my sentences here as each statement is so subjective!
Over to you
As some of you know, I write a monthly article for Patient Empowerment Network and this month I am focusing on the topic of survivor guilt. I’d love to hear from you on this topic. Have you experienced cancer-related survivor guilt? What form has it taken for you? What has helped you cope with these feelings? Do you have any advice for others who may be experiencing this too?
I’d be delighted to feature your quote in the article, mentioning your name and linking to your blog or a social media network of your choice.
Please leave your comments below. I’m looking forward to hearing from you on this important topic.
What a difficult topic, Marie – no wonder you had to use so many inverted commas… I’m not really sure what constitutes a “survivor” in cancer terms – I guess one is a survivor until one isn’t? Since I’ve been living with mets, I’ve known several people who have ceased to survive – and whilst I feel sad that their life has ended (sometimes at a young age) I simply feel grateful and lucky that I continue to be alive. I see no point in feeling guilty for “surviving” – it’s not that I’ve done something to stay alive while keeping it a secret from others. It’s just the randomness of Life. And “survivors” don’t need to pile guilt on top of all the other stressful emotions that many feel already. I know none of this helps those who feel guilt – I just hope one day they will open their hearts and find Peace from feelings of guilt.
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This is one of the reasons why I continue to advocate for cancer patients to have a professional on our teams who can help us and our caregivers, family, friends, etc. to deal with all mental issues associated with a cancer diagnosis. I have adopted the following message to represent my core mission as a patient advocate: “We must learn to treat the patient and not just the disease”.
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Thank you Barbara and I so agree with your mission statement!
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Thank you Julia for such a thoughtful response to this question. I think those words should be of help for those who may feel guilt around this experience – I know it’s helped me x
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I am so glad to see this post. I was just recently diagnosed with DCIS, and will be having surgery and radiation. I have several friends who were previously diagnosed with invasive breast cancers and their treatments involved chemotherapy in addition to radiation and surgery. While I am having a lumpectomy, one of my loved ones had to have a double mastectomy. I want to say that they have been nothing but wonderfully supportive of me as I begin my journey, but I am definitely feeling the “guilt” of having an easier treatment plan. I know that in the grand scheme of things, I am lucky. I have gotten the “best bad news” when it comes to the breast cancer lottery, and I know that my “guilt” is self imposed, but I feel like I shouldn’t complain at all, and I am hesitant to share my concerns or fears.
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GInger, thank you so much for sharing your thoughts on this topic. You are not alone in feeling this way – several years ago I asked the question if there is a hierarchy among cancer survivors
https://journeyingbeyondbreastcancer.com/2013/02/28/is-there-a-hierarchy-among-cancer-survivors/ As I wrote at the time “None of us truly knows the pain another person goes through when they experience a life-changing event, and by learning to not compare experiences, we are learning to practice some much-needed compassion both for ourselves and others”
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Hi Marie,
There have been many times when I have felt survivor guilt. I’m sure there are more such times ahead. Every time someone I know with metastatic breast cancer dies, I feel it to one degree or another. I feel it when I think about my mother. Like me, she was diagnosed with early stage, hormone-positive breast cancer, you know, the “good” kind. Why did her cancer recur and thus far, mine has not?
The way I cope is to advocate for those with metastatic disease as best I can. And writing my blog helps me cope with every aspect of this wretched disease. As does reading blogs that others write.
Survivor guilt is one of those things no one “should” feel. But like so many things, not feeling it is easier said than done. Maybe it’s a normal reaction. BTW, you likely know, I’m not a fan of the “survivor” label in the first place. But that’s another discussion!
Thanks for writing about this topic that so many of us relate to. I look forward to your upcoming piece.
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Thanks Nancy for this great comment – and yes, I am acutely aware of how you feel about the survivor label – unfortunately it’s sticking around in the literature on this as a label for now 😦
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Over the past 18 years I have had 3 different cancers: first breast cancer, then neuroendrocrine cancer and a recurrence of breast cancer. While the breast cancer was initially eye-opening, it is the neuroendrocrine cancer that remains and always will. A few years ago, I attended a funeral for someone who had passed away after just 6 months following his cancer diagnosis. I was asked how long I had had cancer and what did I think about living so long with it? It was in that moment that I experienced Survivor Guilt. I hadn’t really thought about it until someone else pointed out my “luck”. Really? Luck? Luck is never getting cancer. Now I fight all the time to earn my “continued living” and keep the guilt in the background. I get embarrassed when people say that I look so well. I don’t feel well most of the time and it is an effort to look as well as I can pull it off. I have yet to find a “professional” who truly understands what it is like to feel Survivor Guilt. To cope, I try to be a source of information and strength for others dealing with difficult situations. Even it it is just listening to their stories, I try to sow that I care.
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Mary, thank you so much for sharing your story here. There’s so much to unpick – from people’s thoughtless comments on how lucky you are! to feeling guilty for looking well, to the fact that professionals just don’t get this feeling. Finally, listening to people going through this experience, being there for them, even when you are going through so much yourself is a testament to the person you are. I don’t even know you but from reading your words here, I can tell just what a strong and kind person you are.
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