Survivor Guilt. Part I of a series.
We don’t often talk about the guilt felt by so many people living with cancer. I think we should talk about it more. Guilt is one of those mushroom-like things that grow best in dark places that are rarely exposed to sunlight and air. Shining a light on our guilt, letting it out into the fresh air, is one way to loosen its hold over us, to limit its power. People who have progressive, terminal diseases like metastatic breast cancer are liable to feel many kinds of guilt. I’m planning on writing a few posts about it.
I started thinking about survivor guilt following a brief exchange I had with Scorchy Barrington on her blog,(1) when she raised the issue of survivor guilt. Some people die quickly from metastatic breast cancer; other people live for longer. Those of us who live longer sometimes feel guilty. I particularly feel it when people twenty or twenty-five years younger than I die of the same disease. No, it doesn’t make sense to feel guilty about this. Yes, I do feel guilty and I’m not the only one.
Survivor guilt is not limited to cancer patients. In fact, it is much more commonly associated with people who survive catastrophic and traumatic events like a mass shooting, a bombing, an earthquake, political torture, incarceration in a concentration camp, deadly car accidents. Following the mass shooting at the Aurora Theater in Colorado in 2012,(2) CNN ran an article about survivor guilt in this sense, and included some suggestions on how to cope.(3)
Survivor guilt in the breast cancer community is similar and also different. How familiar are these situations (names and stories invented)?
* Amy was diagnosed with Stage II breast cancer. She had a tough time with treatment, but it’s been fifteen years now and she’s still fine, has had no recurrence. Amy volunteers with a local organization that helps women newly diagnosed with breast cancer, and she finds out that one of her colleagues, who also had been free of evidence of disease, has just been diagnosed with mets in her liver.
* Beth has metastatic breast cancer and is active in a support group. Over the years, she has seen one friend after another die of the same disease while she lives on.
* Josephine does not have breast cancer. Every time she has a negative mammogram she thinks of her cousin Meg, who does have the disease and is very ill.
The list could go on and on. So many of us feel guilty about the mere fact that we are alive and breathing! How crazy is that? Not very, as it turns out. Powerlessness is one of the most difficult feelings we can have. Becoming a random victim of a very bad thing is extreme loss of control. In the days following my initial diagnosis I conceptualized the tumor as a rapist.(4) The sense of my life spinning out of control was hideous.
Four years ago, I wrote:
When I was a teenager I was awakened early one morning by a serious earthquake. It was the scariest thing I had ever experienced: I put my foot down on the floor and the floor wasn’t there. The noise came from everywhere and nowhere. Terror. Sheer, visceral terror. The following days saw the aftershocks. I wasn’t alone in being paralyzed by fright when they came, each as strong as another earthquake. Some psychologist came on TV or radio, I don’t remember, and suggested a way to cope with aftershock fear.
Get angry, he said. Stamp your foot, yell, command the earth to stop shaking! Our fear is sub-rational, he explained, based on our powerlessness in the situation. By acting as though we have power over the earthquake, we somehow trick those sub-rational parts of ourselves into believing that we actually have the power. Aftershocks last several seconds and stop, but our sub-rational being doesn’t know that. Hey! I commanded the earth to stop shaking and it did! I’m not a powerless victim; I can take control.(5)
Feeling guilty can be thought of as a way of stamping our foot at cancer. I feel guilty because I did something wrong. I did something: it was not random, it’s my fault; it is in my control. The feeling of guilt isn’t a conscious decision, of course, and is more complex than I am pretending it is. I do believe, however, that on a very basic level survivor guilt is a self-protective reaction of our psyche against intolerable feelings of helplessness.
We ask, “Why me? Why am I alive while my friend died?” We think, “I don’t deserve this.” We tell ourselves, “I should have been the one to die.” None of it is logical; this is the sub-rational part of ourselves.
The answer is almost as unbearable as the cancer itself. The answer is: there is no reason. It just happened. The answer brings us back to that same extreme lack of control. This random bad thing happened to me. That random bad thing happened to him. The other random thing happened to her. Random – one of the most terrifying words in any language. So our wonderfully self-protective psyche makes us feel guilty instead of vulnerable.
The problem arises, of course, if the guilty feelings continue. Healthy guilt impels us to corrective action when we have done something wrong. Prolonged survivor guilt when we have done nothing wrong is more hurtful than helpful. But what to do about it?
(1) Do you know Scorchy’s blog, The Sarcastic Boob? If you don’t, you should!
(2) To refresh your memory in this sad era of so many mass shootings, here is the Wikipedia entry.
(3) In the last part of this CNN article about the Aurora survivors are some of the signs of PTSD and some strategies for coping with survivor guilt.
(4) “Fact: Rape is an act of power and control, not sex.” From the University of Michigan Survivors of Sexual Assault Handbook.
This is an EXCELLENT post!
I relate to this in so many levels. I particularly have a nasty taste for “this is your punishment for ‘something’ you did in your life.” This is the worst for me because it has become culturally acceptable in the country I was raised.(Working on a post about this now.) And when a behavior/belief becomes cultural, it is hard to change.
I am not sure how we can fix the “guilt” when it comes to other patients who don’t survive. I am ware it isn’t our fault, but I think this is what makes us humans, in a way. How can we watch and not feel bad? Can we control the emotions that are naturally awaken?
When I was a kid growing up, I didn’t have much. But I remember there were kids who had a lot less than I did. They had no clothes or shoes, and were always hungry. My grandmother caught me feeding them my food and she would get upset with me because I was so skinny she thought I would get anemia. In my mind it didn’t make sense that these kids were my age and they didn’t have what I had, which wasn’t much. So I shared. Because I could. In cancer-land, we can’t share. So we are pushed to watch and feel bad without being able to really help. And those feelings go on and on because so many die from this illness. So it’s not like we are reminded once or twice. We are reminded all the time. It’s like watching those poor kids everyday, hungry and do nothing about it when I am having my foods everyday.
I think it’s natural for us to feel “guilty” even when it doesn’t make sense because we are humans. Now other people might not feel this way. It doesn’t mean they are bad people. No. It means they’ve reached a level of acceptance and understanding some of us haven’t, for whatever reason.
It sure doesn’t help our situation when we feel guilty. I know. But can we really stop our natural instincts?
Very good post. xo
Yes, it is natural. It’s a way our psychic organism protects us. But it goes too far or lasts too long it can become a problem.
I’m planning to address the “because I’m bad” kind of guilt in another post, too.
I too have experienced and continue to explore survivor guilt. It’s real and affects my ability to function in both negative and positive ways. I’ve come to accept the immediate sensation of being immobilized (under stress I freeze more than fight or fly). Then comes the heart warming thaw and reconsideration – what is possible? How can I best serve this person/situation?
As I described in a recent blog post below, there is no time bank that I can donate my lifetime hours to. Yet, I can care. Care for others and for myself.
My message this morning is to soften my heart for myself. To hold myself in tender, loving care. Today, that is enough.
Keep writing, Knots! I’ll keep reading.
excerpt from blog entry
I’ve been reflecting on survivor guilt again. I’ve loved ones experiencing all phases of disease diagnosis, progression, remission and dying.
Once again, I was wishing there were a time bank where I could donate hours of my life to people who need/deserve/want life more than I do.
It’s not really my good luck or unearned fortune or slackadaisical approach that lead to guilt, but something about wanting, about wanting what you don’t have, something others have, but you’re forbidden or prevented.
They want what I have and I’d happily sacrifice it to them, if it were possible. It’s not, though. And my work is to walk my own life one step at a time.
I do know envy.
So many things I might have done with a healthier body – child bearing and rearing, travel, profession, accumulation, sports…maybe even war or battle.
Instead, I learned to do more and more with less and less.
So now, do I know how to do everything with nothing?
(it’s a joke about Ph.D.s!)
Yet, now that I’m comfortable in my own skin, I feel more blessed, more fortunate, overflowing with good will.
I want to offer to others whatever is useful of my experience.
It’s the inverse of envy – I want people to have what I have.
And what I seem to have more of than most is “quality time”, kairos time, slow time.
And the capacity to reflect, write in this blog and meet people in person.
Wow, Stephanie. Thank you so much for commenting and sharing your own post about this guilt.
Excellent, sharply-focused post, this. I wonder if my fear that my worsening cough wasn’t entirely rooted in general Canceritis, but also in part in survivor’s guilt. I have someone who’s become dear to me who recently learned she had progression with mets in two new areas. It’s not fair. That sub-rational part of me might have considered it more ‘fair’ if I too had new progression. Survivor’s guilt, wanting to be able to say “You’re not alone in this”, all of that.
That’s not the entire reason I went in for scans; a large part of it was the worsening (while on meds) and quality (dry and severe) of the cough, which matched some descriptions of lung mets coughing I’ve seen from people who have it. But the sub-rational part of me which almost hoped they’d find something was definitely rooted in survivor’s guilt.
I look forward to the rest of this series.
I have the same severe, dry cough. It alarms some of my friends who know about cancer, but in my case it’s from my blood pressure meds. I’m just going to assume it is still from that. *lalala ican’thearyou*
Thanks for sharing some of your inner world with us here. It’s not easy, but I believe (and I think you do, too) that this sharing is one way we help each other.
When my friend Maxwell died last year, all I could think was: Why him and not me?
I am so sorry, Eileen. That is one of the hardest ones.
Thank you for bringing this up. My mom and my dog and I were all diagnosed with cancer at about the same time and I am the survivor. It was a terrible experience but I have had survivor guilt ever since. I really appreciate the information you shared and the tips. I am grateful for your honesty and willingness to help others. Thank you Telling Knots!
Such a perceptive post, Knot. I’ve always thought that guilt in general comes up when we feel angry and powerless at the same time. One of the ways I’ve dealt with it myself is to harness that anger into speaking out, as you have, and trying to channel it into some kind of action or advocacy. The worst thing is when guilt turns in on ourselves, where it can wreak all kinds of havoc. It’s hard to kick it back out of our psyches, but talking about it, facing it, helps cut it down to size. I look forward to your follow-up posts. I am sharing this one. Much love, Kathi
I don’t feel guilty at all – as someone NED for over a year from Stage IIIC ovarian cancer, I just feel lucky, very lucky. I had a great year, got a lot done at work, and had only minor illness. Mostly I worry when the luck will run out. I feel like life pushed me into a game of Russian roulette that I didn’t want to play and somehow the chamber keeps being empty, but I know eventually one chamber won’t be. I don’t feel guilty cuz I know every game ends and every game ends the same. We all have our own way of dealing with cancer and this seems to be mine.
Great post, Knot. So far, I’ve had no guilt that I don’t have cancer or Alzheimer’s. As you say, it’s out of my control and random. I tend to feel guilty over things that are in my control. Am I doing enough for my family who are ill? I hope so. Maybe. Probably not. Can I ever do enough? I hope so. Maybe. Probably not….
Thank you for this well-articulated post. Sometimes I do experience survivor’s guilt and I know whenever I do, it’s totally an illogical way to feel. It’s hard to accept sometimes that so much is out of our control, that so much is random. I’m wondering how your faith plays into all of this. Do you believe in God’s plan for you or do you believe in randomness, or maybe a combo? I look forward to your series. But then I look forward to everything you write. xx
My mother was in a memory care facility for the last few years of her life. One day during a visit, I noticed one woman acting very agitated and constantly lobbing questions to the care staff. She finally asked “Am I going to die today?” One of the caregivers smiled and said “I don’t think so. Not today.” The woman’s eyes grew larger and then she bellowed out “Why not?”
For whatever reason, that situation has stuck with me and always makes me smile. I thought about it again when I was reading this recent post.
As a person living with stage 4 breast cancer for 17 years, I have known far too many men and women who have died of the disease and have attended far too many funerals. I have no idea why I have survived all of them and keep on living. I feel pretty healthy, other than the cancer. I haven’t done anything magical, taken any unusual courses of treatment nor have I done anything that isn’t available to others.
When I meet others with mets, I’m often asked to recite all the treatments I’ve been on, as if the series of treatments is the reason why I’m still here. I’ve had so many types of therapies that I can’t even remember when and for how long I’ve been on each. Sometimes I feel like I’m disappointing the other person by not mapping out a handbook for living a long time with mets. I get the sense that some believe I’m holding something back, some magic bullet that ensures long survival that I greedily hold onto.
One day, we will have a better idea why some people can live with their disease for decades and others live a much shorter span after diagnosis. Until then, I continue to live with the nagging question asked by the woman at the memory care facility: “Why not [me]?”
Sometimes I feel guilty when people at church want to know when I’ll be well. I guess with a year of initial BC treatment, followed almost immediately with mets treatments ever since, I appear to be going for the record on how long you can be on the church prayer list.
I also feel guilty when my support group loses another woman. Why her, not me?
Guilt is not logical, but many of us deal with it, at least part of the time, anyway. Thank you for this article which faces what so many of us feel.
I am very sorry that I could not respond to every comment this time. Writing this post took a lot out of me, and it will be a little longer before I can revisit the topic. I will revisit, though – be sure of that!