What is “Survivor’s Guilt”?

December 11, 2017 • By Fight CRC

Survivorship
hero symbol
There are many side effects a colorectal cancer survivor endures: neuropathy, pain, bowel issues, and more. But what about guilt? Is that a side effect? For many, it can be a lingering side effect of cancer.
"I often find myself thinking I have to do something big and grand with my life, that I must try to be better and give a valid reason to the questions of 'Why me? Why was my cancer found early? Why did I get to walk away from cancer physically unharmed?' In truth, I haven't walked away.... I'm in it everyday living with the fear of recurrence. I know I won't ever get an answer to 'why me,' I just try every day to advocate and share my story in hopes that someone will hear it and also find their cancer early. I'm still working through the guilt and probably always will be." - Amanda Houston, Stage II Survivor

Defining survivor’s guilt

Simply put - survivor’s guilt is the guilt a person feels when they have gone through a traumatic experience and survived, and others have not. It has been classified by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) under the umbrella of Post-Traumatic Stress Disorder (PTSD). Cancer is certainly a traumatic event and survivor’s guilt is common among many survivors, especially among those who have developed a strong community among other cancer patients and survivors, who have witnessed their community members pass away as a result of their cancer. The way survivor’s guilt is experienced varies from person to person. People differ on the amount of time the feelings of guilt last, the intensity of the guilt, and how an individual is able to move through the guilt. Feelings of guilt often result from surviving the cancer when others do not, but it can result from other experiences as well. For example:
  • Disrupting family routines for your cancer care. Guilt can arise when reflecting on how dramatically your family dynamics changed as a result of your cancer diagnosis and treatment.
  • Not living your healthiest life after cancer to prevent recurrence. Guilt could arise every time you reach for a soda instead of water, or when you take a week off of exercise. There are many studies that indicate ways to reduce risk of recurrence, and not adhering to these 100% can make some people feel guilty, as if they are taking their survivorship for granted.
A common question survivors face experiencing survivor’s guilt is: WHY ME? Trying to wrap the mind around why someone survives colorectal cancer while others do not can be incredibly challenging. Even if someone feels relief and joy to have lived, these feelings can be counteracted with feelings of shame for feeling such a way when others do not have the opportunity. Needless to say, survivor’s guilt is complex. Read more:  Distress Screening for Cancer Patients

What to do if you’re experiencing survivor’s guilt

"Advocating helps me deal with guilt, but when advocating gets to be too much, simple tasks of enjoying everyday life help me move through my guilt. Sometimes just taking my dog for a long walk helps. Some days speaking with other survivors helps, it lets me know my feelings are not solo. There are tons of survivors trying to make sense of life after cancer, and the feeling of guilt is part of that. We have to recognize it and learn to deal with the emotional side of it. - Amanda Houston, Stage II Survivor
It can be difficult to explain your feelings of guilt to someone in your support circle who has not had cancer, as it’s easier for them to see only the positives of how you ‘beat’ cancer. So it’s important to seek support from other survivors in addition to trained mental health professionals or social workers who are familiar with survivor’s guilt and cancer survivorship. Here are some ways to work through survivor's guilt:
  • Share your feelings with your support group
  • Take time to grieve those who have died
  • Remember that it’s okay to feel appreciative of your survival
  • Talk to your social worker or mental health professional about guilt
  • Know that feelings of guilt are normal and you’re not alone

Get Support for Survivor's Guilt

If you're looking for someone to talk to, our Toll Free Resource Line: 1-877-427-2111 is available. We established a partnership with Cancer Support Community to provide a free call line available in English and Spanish. Live assistance is available from 9 a.m. – 9 p.m. ET Monday through Friday. The call line does not offer medical advice, but is for informational purposes only. If you're looking for a way to connect with other survivors, an easy first step is to join our Advocates of Fight CRC Facebook group and our Inspire community message boards. Make plans now to join us for Call-on Congress in March! What about you - have any other tips for how you cope with guilt? Leave a comment below!

16 thoughts on “What is “Survivor’s Guilt”?”

  1. I just finished chemo. I had Sigmoidectomy and stage 3c. I’m so so so happy this is behind me. My scans are in a few weeks and hopefully get the all clear. I thought I’d be jumping for joy, but I keep crying and crying bc I feel guilty for the people I met on colontown.org everyone is super supportive and some are not doing well. I cry bc I realize how lucky I am. And I think back maybe I was a selfish person and done things I regret now. I have a second chance but I feel awful. I can’t stop feeling this way. I’m happy but I’m so so sad. I wish I can stop crying.

  2. I survived stage IV and feel guilty for both surviving and for daily thinking it would have been better if I hadn’t survived because of chronic, increasing, debilitating pain and because of barely having enough money to live on that could instead really help my 3 adult daughters.

    1. I’m so very sorry. Please let us know what resources or connections we can make to help you.

  3. This article really helped don’t know that it will get rid of those feelings that I have that I couldn’t put a name to but now I know it’s not just me that has these feelings of guilt for the permanent changes in my marriage and family and home because of my stage 3 rectal cancer and the resulting surgical changes and daily habit changes. 14 months ago I finished my last chemotherapy treatment and I’ve had a clean skin and good blood work since but I still struggle with neuropathy in my feet and pain in my legs that there is no explanation for. But I do appreciate what I have that I’m alive to share in the lives of my children and grandchildren.

  4. Very well said.
    I am stage IV who got an almost clean scan barely a month ago.
    I am on immunotherapy and it seems to have worked. I am so confused and regularly hear all these comments regarding being special and lucky.
    Just grateful .

    1. I was diagnosed with stage IV (metastasized to liver) in late December…and I want to hear MORE of your story and celebrate with you! I crave positive stories as I continue in my own battle.

  5. Thank you FightCRC for sharing this article and letting me share a glimpse of some of my thoughts. Reading the comments let’s me know I’m definitely not alone.

  7. Thank you so much for this article. I am relieved that this is not just me. I was diagnosed with Stage IIB colon cancer at age 28. I joined a LiveStrong group, which was so immensely helpful while I was going through six-month of chemotherapy. But then, we lost the first of the group, and then another, and another, and another to cancer. Four now out of 10 of us. Whenever someone says something about me beating cancer, recognizes me for overcoming it, or even when I try to be an advocate – I feel like a farce. I didn’t go through half of what these friends did and I was never told that I had X-percent chances of living. By all accounts it was caught early – so what triumph do I have to show? And in all honesty, I am struggling with self-doubt and have been in the mental dumpster since finishing treatment two years ago. It’s getting better, but I think it’s taking this long because I don’t want to talk about the emotional toll that this took on me. Why don’t I want to talk about it…it’s survivors guilt. And every time I try to explain that feeling to someone, I am often met with the sentiment of, “but you beat cancer!”. This was just so good to read to know that this is normal. It’s not just me. Thank you.

  8. What troubles me, is I was told it was survivor’s guilt as my father died of Adenocarencoma and I have inherited this type. It appeared in my uterus, and I called Lynch syndrome. But what really troubles me is at times I wish I hadn’t survived, but it’s not like guilt, but there are times I wake up to seeing my father breathe his last, then the inside of the OR. It’s like a creeped out “What do I have to look forward to?” Feeling. This is especially so because of our political climate in the US to today. It’s more like a feeling of terror and dread for my future. I have multiple disabilities that I started with sainted birth and developed further problems as time went on, then it was the Adencarcenoma. I also am dealing with the affects from Lyme disease. But with what is been happening in Washington with the budget and the tax thing, destroying Medicare, Medicaid, Social Security and the ACA it’s VERY frightening. I almost wish I hadn’t made it, because here I struggled and did all I could do to survive and even flourish afterwards and now the rug is being pulled out from under me. But, I was told it was survivor’s guilt. Is that what it really is or something else?

    1. Thanks for sharing your story with us, your feelings definitely make sense. We can’t say if what you’re experiencing is one condition or the other, but our toll-free resource line may be able to help if you need to chat with someone. They have live counselors available. 1-877-427-2111.

  9. I’m glad that I found this article because I’ve experienced this, too. One reaction I’ve had is that if I survived (stage 4 with metastases, diagnosed on 12/21/10), I must achieve something startling and significant. I must part oceans and pull swords from rocks. This idea I’ve often heard from people who learn that I’ve had cancer: “Oh, God must have saved you to do something wonderful,” “God must have a plan for you,” or some variation on that sentiment. I stayed alert for some such opportunity, worked hard at writing, since I’m a writer, and waited for some divine sign, although I’m not at all religious. I felt like a failure because I didn’t know what to expect of myself. I thought I had to earn my survival by a payback of some sort, prove my worth, demonstrate that I deserved to live, etc.

    I also have felt, as you’ve mentioned, that I had to be grateful every minute. No more taking anything for granted, or grumbling about petty stuff, or getting depressed about something that isn’t a life or death issue.

    I’ve also felt that there must have been some mistake in my surviving, and boy, when someone finds out about it, I’ll be outta here; I keep a low profile as a result.

    I don’t mention my miraculous survival (that’s what it is to me) to other people with cancer or families who have experienced the death of a relative with cancer because I’m anxious that they may feel resentful or ask themselves, “Why her and not me or mine?” I don’t know the answer to those questions. I’m still amazed myself.

    I’m also still shell-shocked from my expectation of dying, and frankly, the opinion of some physicians whose experience influenced them to expect the same, though mostly they’d hold out some loophole; that, hey, maybe there’s a chance you’ll beat the odds. The odds were 5%. So, I’m always checking behind me, to see if cancer may be catching up because my survival was a mistake. In other words, I may think that I’m a survivor, but surprise, I won’t be for long.

    Consequently, I don’t tout that I’ve beaten cancer, whipped its ass, etc. Instead, I feel like standing in a corner, folding my hands together, and feeling grateful and humble that I’m still alive. Not that I stand in corners a lot. I try to enjoy each day, since that’s the only one that anyone, with or without cancer, can count on. And I tell myself that it’s up to me to make the best of each day for myself and others.

    I’m grateful for my husband and family, who took care of me, who took time from their own lives to comfort me. I’m thankful to excellent physicians. I count my blessings. I thank the home health care nurse who gave me courage and care.

    Thanks for identifying cancer survivor’s guilt as PTSD, which I’ve not connected before with my five-year fight for survival. I had chemo, radiation and two surgeries during that period. I suppose that does take a toll on one.

    1. Anne, thank you for sharing your experience with us and glad you found this article helpful!

  10. Thank you for sharing. I am 5wks post surgical treatment for a Dukes B / Stage 2 Tumour / T3 N0, M0. The tumour had most likely been in situ for some time as there was evidence of blood streaked motions some 1.5yrs ago and a history or significant rectal bleeding for a number of months before screening lead to investigation, diagnosis and treatment. This was not an intentional neglect. Initially it was put down to piles and latterly due to caring for a relative at End of Life there was no opportunity to seek help. I have however been struggling with Guilt which is very difficult to explain to people. You have tonight lightened the burden I feel. Thank you so much.

Comments are closed.