Recently, I was talking with someone who doesn’t have a genetic propensity for cancer while her sister not only inherited the propensity but also has de novo Stage IV Metastatic Breast Cancer (MBC). In discussing how this dichotomy is dealt with in their family versus my own, she mentioned that she has had to deal with a great deal of guilt. She didn’t elaborate on the specifics, but I suspect that I know a little about where this feeling arises … guilt that she was spared when her sister was not … guilt that she cannot take away her sister’s suffering … guilt that her sister’s child will grow up motherless where her own will not … guilt that she will live a normal lifespan when her sister will not.
We also talk about a different guilt in our MBC support groups, that of the unicorns who remain stable or No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD) while others progress on every medication, suffer horrible side effects and die quickly, leaving family behind. I most often hear this guilt manifested in those ladies with grandchildren when talking about those of us with younger children, who more often have aggressive disease.
But is this “survivor’s guilt” really an expression of shame?
Let’s look at the definitions …
1: the fact of having committed a breach of conduct especially violating law and involving a penalty; A jury will determine the defendant’s guilt or innocence.broadly : guilty conduct
2a: the state of one who has committed an offense especially consciously; His guilt was written in his face.
b: feelings of deserving blame especially for imagined offenses or from a sense of inadequacy : SELF-REPROACH
3: a feeling of deserving blame for offenses; Wracked by guilt, he confessed his affairs.https://www.merriam-webster.com/dictionary/guilt
Clearly, most of the definitions for guilt focus on something that the person has done. The two real world examples above, I believe, fall into the definition 2b above, those “feelings of deserving blame for imagined offenses or from a sense of inadequacy.” And I think the latter, the sense of inadequacy is the issue here. When there is a trauma, a horrible thing that has happened to someone else and we can’t do anything about it, those feelings of inadequacy are intensified. And when we care about that person, intensified exponentially.
Ok, now for the definition of shame …
1. the painful feeling arising from the consciousness of something dishonorable, improper, ridiculous, etc., done by oneself or another: She was overcome with shame.
2. susceptibility to this feeling: to be without shame.
3. disgrace; ignominy: His actions brought shame upon his parents.https://www.dictionary.com/browse/shame
Yes, I went with another website’s definition here because I like how the one emphasizes how shame can arise when we look at the affect on others. Guilt seems, to me, much more about the acknowledgment that one is to blame for something whereas shame is more about the affect on others or how one is perceived overall.
I found this article that talks about the differences between guilt and shame in the context of a mental health diagnosis and I like this chart:
Feeling remorse or responsible for something you’ve done wrong or perceived you did wrong
Relating to a specific action like making a mistake, committing an offense, or hurting someone (intentionally or unintentionally)
Feeling that you are bad, worthy of contempt, or inadequate as a person
Relating to our behavior or self, often in relation to other people’s opinions, not necessarily about a specific behavior or eventhttps://www.verywellmind.com/what-is-shame-425328
When looking at definitions and reading articles, I can only conclude that in feeling what most label “survivor’s guilt,” it is really a mixture of both guilt and shame. As human beings, we have no control over how our genes behave or how we respond to medication and yet when we see others have a different experience, a worse experience, we felt bad; we feel as though we have somehow skipped ahead in line without merit. This feeling of having “cheated” or gotten a better deal without earning it can be hard to handle, especially when we really care about the person who drew the short straw.
And so what do we do when we encounter these situations where we encounter the bad luck of someone else and compare that with our own relatively good luck?
Stay tuned for Part II
7 thoughts on “Guilt v Shame, Part I”
I experienced “survivor guilt” when our older daughter was born. She was a tiny premie and we were about to take her home after two roller-coaster months in the hospital. I was walking down the neonatal hall and encountered a medical professional carrying a small bundle, followed by a distraught man and woman. They were being whisked into a private room. I was about to take my baby home with no apparent long-term complications and they were preparing to say goodbye to their child forever. It was like a punch in the gut. Just a few weeks earlier that could have been our baby. I can’t imagine how much the guilt would have been compounded if they had been friends or family, people I’d continue to live life with in the years ahead.
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Thank you for sharing that experience. My second son spent an hour in the NICU when he was born bc of a cord issue and we felt the same way as we left after an hour and so many others didn’t. It’s all about perspective. ❤️
You truly explained how I feel and have felt for years. Bethany was one of five children and our lives were not always in sync. It was when we looked at each other in the hospital, as she was coping with an overdose of chemo and did not know that I had stayed with her through the night, that she woke up and said, “I Love You, Mom,” and I replied the same that even though we both understood that her physical time was limited and I could wish forever that my life would be taken first, the three words that were spoken, relieved the Guilt and Shame. It is now the grief which is often not addressed that I feel. Days of mixed sadness and happiness that my daughter existed and made so many lives better!!❤️❤️❤️❤️❤️❤️You are wonderful and have helped me sooo very much to understand reality of MBC!! It is no wonder that Bethany called you her friend. I can’t wait for Part 2!❤️❤️❤️❤️
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Perspective is everything. ❤️
Oh man. I relate to this. Since I’m brca2+, this topic has been popping up in my family ever since my mother learned she was the carrier of this mutation, which was after her diagnosis. She expressed guilt about potentially passing on the mutation even though we all knew, of course, it was out of her control. And one of my sisters, also brca+, has always downplayed her experience with prophylactic mastectomy etc because she didn’t have to deal with cancer. Her experience hasn’t been easy either.
And you touch on something that many of us feel whenever we get good news or remain NED. Do we share? If so, where? Are we causing angst for someone who’s getting bad news or likely will? It’s hard. Everything about cancer is hard.
I’m not sure it’s shame we feel though. I’ll have to re-read your piece. I feel bad when I know others have it worse. Really bad. I certainly don’t deserve better than anyone else, but I don’t think I’ve ever felt shame over it.
Feelings can get complicated, that’s for sure! Thanks for another thought-provoking post. Looking forward to part 2.
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Complicated is right! Families and germline mutations is a minefield, for sure. Appreciate your insight and thoughtful response.