Episode 46: Survivor’s Guilt
While surviving a life-threatening situation calls for celebration, it comes with a heaping helping of guilt on the side. Why did some of my friends die and not me? Or why did my loved one get sick and not me? Today on the podcast we discuss the lingering effects of survivor’s guilt.
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TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Kayla 0:42
Hello and welcome back to My Sister's Cancer. I am your co-host, Kayla Crum, here with my sister, Ella Beckett. And as you probably gathered from the title, today we will be addressing the topic of survivor's guilt. So not a light and breezy episode, although so few of our episodes truly are light and breezy. If you're new here, we cover the topic of young adult cancer in particular, and our goal is to educate and empathize. So, provide some education for people who are outside the cancer experience wanting to understand more, and empathize with those of us, both siblings and patients and those around us and our families and friends, who have walked this road before. Survivor's guilt… I think we all picture, you know, somebody dies and the person who doesn't feels guilty. And at its most basic, that is what survivor's guilt refers to. And we'll definitely cover that concept today. But we're also going to look at it in a few less obvious ways as well. Um, I think that there are elements of survivor's guilt, not just in people who are left behind by a death, but also on people who weren't the ones who got sick in the first place, or people who went through something hard themselves and are still here to tell about it. So we're going to kind of look at it from a couple of angles. Today there will be the topic of death addressed, but I wouldn't say that will be our main focus. So be kind to yourself as you listen, you know, see if this is an okay time for you to listen to this episode. We always want to encourage you to not put yourself through more than you're ready to, but our hope is that we will help you feel seen as we go through these hard topics. So, Ella, we'll start with the most obvious definition of survivor's guilt, which I just mentioned. So that would be somebody surviving someone else. And in that sense, I mean, you survived cancer. And we've talked before on other episodes about how that term survivor can be victorious and also kind of heavy. And you have lost people, friends, in the cancer community to cancer. So how does that feel to be a survivor of something that not everyone survives, for lack of a better word?
Ella 3:18
Yeah, I mean, I think that's just the heavy truth of it is that not everyone survives. Right? And I think guilt definitely is the right word, at least in my experience. Like I remember very early on, you know, doctors and medical professionals and whoever. We're very clear that like the cancer that I was diagnosed with was very treatable. It was, for lack of a better term, “the good cancer” or the kind you want to get, right? And I mean that in and of itself… I think there's a lot of layers there because it's like, okay, yes, I got diagnosed with this life-altering illness, but it's like there was a path forward. There was a way to treat it. So I think there's even a layer of like, questioning, you know? Oh, well, how come I got this diagnosis and this person had to get this, you know, super challenging, hard to treat diagnosis? So I think, you know, because every cancer is so different, obviously, I think that's a huge part of why there are people who survive and people who do not. Like there's just so much that goes into all of that. Yeah, I guess that's a… it's a hard question to answer, but at the end of the day, it's like it's just really challenging, you know? And I really appreciate what you just said about how you survive cancer, right? And you want it to be this big victorious thing. But it's like at the end of the day, you know that not everyone who receives a diagnosis, you know, is able to have that celebration or is able to continue life afterwards. And I think that's just a really challenging truth to kind of carry with you.
Kayla 5:09
Mhm. I think another area in which we hear the term survivor's guilt is sometimes related to, like, war. Soldiers will really struggle if like most of their platoon dies in some sort of, you know, encounter or accident or bombing or whatever. And they for some reason make it out. Could be as simple as like they were going the bathroom when their building got bombed and so they weren't in that building or, you know, just luck, right? Is what it sometimes boils down to. And we wish we had, like, more than chance to point at. And it gets really tricky because similar to cancer, it's like we want to hold so many things at once and it's just hard. Like, I never want to say like, anyone who died didn't try or, quote unquote gave up or lost. But at the same time, I don't want to take away from, like, your strength and like the strength I saw you embody and how you persevered and were courageous. I want to honor that the people that died also exhibited those traits in a lot of instances. Am I making any sense? Do you know what I'm trying to get at?
Ella 6:29
Yeah. Well, and I think, you know, I think it's really interesting that you just brought up, um, a war analogy. That really rings true because, again, I think it ties back to us not loving the battle language. Right. Like, I still to this day, if I read an obituary and it says so-and-so lost their battle to cancer, like I just cringe. Like I do not like that at all. Because like you were just trying to articulate, those people didn't lose.
Kayla 6:58
Maybe we're thinking of lose and win in more of a sports way, and maybe what people mean by that when they say lost their battle does leave room for the chance of war, right? Like when we say a battle is lost, I don't think it always means that their strategy was off or that they were terrible at it. But it's complicated. I don't know, the lose-win terminology is hard and the survivor term is hard for that reason too. Like it's silly, but I'm reading a book right now where certain people, like, survived off a shipwreck or whatever, right? And it's like the same thing. It's like, why? How did some people make it and some people don't for any sort of like natural disaster or unexpected event? And it's just like we don't have answers, like we want to point something. And I think that there's people who could have even the same cancer as you. Like, I'm glad you acknowledged that there's so many different types of cancers, which is part of why this is hard. But someone could have the same exact diagnosis and and die from it. And so it's just like really hard to carry that with you and not really know why your body reacted one way and someone else's didn't. A few years ago you were still pretty involved in, like, various support groups and stuff with, like, cancer peers. And is that—is survivor's guilt something that you all have talked about together, or is it sort of like an elephant in the room when, like, you lose somebody from one of those groups? Like, what has that experience been like?
Ella 8:46
I can't really remember specific examples of conversations if we have like, addressed that point blank. And I think part of that, honestly, is that many of the close friends that I've lost to cancer… It happened when either I was on isolation or like during the pandemic, like there were different factors that I don't think I was physically with other people to process that, but I think that's one of the hardest parts of joining, you know, a cancer support group or something like that is that you get so close to these people and you're sharing your experiences, and it's so hard when you're the one in the room that has the good news and like, your treatment has gone really well. You're moving into this survivorship season at the same time when one of your good friends that you just made got really terrible news and like they relapsed and they're going to have to start treatment all over again and things aren't looking great. Like, yeah, I think it's just been really challenging to kind of navigate: how can you hold your joy and excitement over your good news when at the same time, you know, your friend got the bad news that, you know, eventually, um, led to them not not making it.
Kayla 10:15
I often think that from a clinician perspective too, because as a nurse who's worked in cancer, I know that you can walk into one room to where someone is dying and then you go in the next room and someone is celebrating that their cancer treatment worked. And you have to, like, meet the moment in both rooms and, like, hold that. I thought that at pivotal appointments that we've had for you where your doctor has come in, and you know, cried with us or celebrated with us and it's like, and then she has to leave this room and go in the next room and maybe do the opposite. Something that we have maybe alluded to in this conversation but haven't explicitly covered is a sibling or loved one who survives their family member who has died from cancer. So we've kind of been talking about a cancer patient’s experience of survivor's guilt. But we also acknowledge that there's an element of survivor's guilt for the family members who are left behind in these scenarios. And we want to tread carefully here because this is not something we have firsthand experience with. Obviously Ella is still with us and we haven't had a close family member pass away from cancer yet, so we just want to acknowledge that experience. I think that it relates closely to what I consider the third brand of survivor's guilt, which is the one that I carry with me, where I feel a sense of guilt that I wasn't the one who got cancer. I'm not trying to equate these situations at all because I still have you with me. But I think some similar feelings that come up are my sibling was, is so much better than me. And by better we might mean, you know, more ethical, a better gift to the world. And we tend to see, I think, sick people sometimes through rose-colored glasses. So no offense to you, Ella, but, um, right, like, maybe in these situations we, we tend to forget the parts of our siblings or whoever that annoy us, or are their less than desirable traits and just think like, oh, like they were the best of us. Like it should have been me. Like I'm a fill-in-the-blank terrible person. Or they were helping people in their job and like, I just sit here crunching numbers, like there's a lot of that type of thought. I think that can happen to close loved ones like a sibling, whether their person is alive or has died, and I definitely have felt that guilt. I don't know if survivor's guilt is the right term or if it would be like healthy guilt, but I don't mean guilt in a good way. I'm trying to think of a phrase like the healthy one’s guilt. Like the one that everything goes fine for. I wrote a poem called “Sibling Guilt,” and I think I'll just read it for you. It's not too terrible long. That really gets at this idea of what I'm trying to express. So here is the poem.
My sister’s a survivor / of cancer / of being an object / of pity
Sometimes my guilt / overwhelms / drowns / suffocates me
Because my life is so nice
For Pete’s sake / (who is Pete, anyway)
I was the homecoming queen / an honors student / a nurse
That girl who married her high school sweetheart
While my sister was hooked to / tubes / machines / the prayer chain
I was changing my / job / home / last name
With all the brazenness of someone whose body hasn’t betrayed her
My sister lost / whimsy / weight / a working womb
I gained soft padding / on body parts / that have never been poisoned
And the audacity to delay having children until it “feels right”
My husband has a sweet smile / a dry sense of humor / his future
My sister’s husband has a great laugh / a kind heart / a tumor
Because life wasn’t already unfair enough
My mom used to say / “life’s not fair” / when we’d whine
Little did she know / this truth would eclipse / her wildest expectations
As her baby was handed a burden far bigger than her firstborn’s
This isn’t a competition / a call-out / a condemnation
Of the healthy / the “normal” / the as-yet-untested
Because most of the time, we didn’t cause our sibling’s suffering, but
This is a reminder / a rallying cry / a remedy
To sometimes acknowledge / out loud / in a text / in your handwriting
That your sibling got dealt a bad hand, and you see how lucky you are
That sometimes it feels like they got handed all of the lemons
And you got all of the lemonade
Leaving them with / rinds / peels / a sticky mess
And that you don’t know / how / to fix it
But you’re sorry.
You’re sorry.
Ella 15:49
Mm. Thanks for sharing that.
Kayla 15:51
Yeah. It’s… it's again hard because even sharing that, it's like I'm trying to center the fact that I feel guilty and yet I'm talking about “woe is me, I feel guilty.” So it's like a cycle. Like I come back to being like, even talking about it in this way makes me feel more guilty sometimes. Do you know what I mean? I don't know, did that clarify it all for you what I'm trying to express, or is this a perspective you've considered before?
Ella 16:23
Oh, yeah. I remember when you first read this poem to me and yeah, I mean, honestly, it meant a lot, you know? Not that I thought that I want you to feel guilty. I don't want you to experience those, you know, negative emotions, but I just—it's so beautifully worded. And I think it just acknowledges that, like, like we've said, and we'll say again, life's not fair. Right? And just, I think I really love the part about how, you know, you say, like, acknowledging out loud in a text, in your handwriting that like, your sibling got dealt a bad hand; because I think, you know, for our sibling relationship, it's meant a lot when we can have those honest conversations about how we're feeling and acknowledging things that are hard and ways that maybe life isn't fair. I guess I'd be curious for other siblings who are listening to this and might be really wrestling with feeling guilty. Like, what are some ways that you have found to cope with those feelings or like what to do with those feelings?
Kayla 17:32
That's a good question. I think for me, like, writing stuff like this is one outlet for those feelings and talking about it with you, right, like you just mentioned. But yeah, I would love to hear if anyone listening has other thoughts on dealing with these kinds of feelings. And this would really expand beyond the cancer world. You know, I have friends who have siblings with diabetes or some obscure digestive disease, and some of them, it started at birth or in childhood. And so you've lived your whole life sort of in the shadow of your sibling’s illness. And like we've talked about on other episodes, you'll have days where you're almost jealous of your sick sibling because of the way your parents have to cater to them. But then there's days where you're just crushed by the way that you're fine and they're not. And it was just like the luck of genetics or whatever that gave them that illness. Our experience was finite. And there are diseases that just so far have no hope of a cure, and you just are going to live with it your whole life. And so I’d also be curious as to how that experience is for like, siblings. And from a survivor's guilt perspective, I don't know. I guess another element of this guilt centers around something totally irrational, but I sometimes think of myself as a disaster magnet. My husband and I have talked about this together, where we feel like bad things happen to the people we love and those around us, but for some reason they never quite happened to us. And on the one hand, right, like how lucky are we? But on the other hand, it's kind of a crappy feeling because you almost start to feel like you're attracting some sort of like, karmic disaster on your loved ones, parents, siblings, close friends. It's like, we've just had kind of a lot of our close people have hard things like that. And yet, like, here we are buying a home and like, now we're having our first child. And it's like on paper, literally everything has gone right for us. Like it says in the poem, it's like we're high school sweethearts and like, we both went to college and graduated and like—and I say it in that voice because it's like, almost annoying to just like… I would imagine that somebody who hasn't seen me in ten years, since high school, would be, like, mildly annoyed if their life's not going well. That like, yeah, here I am checking every box or whatever. Now, I did walk away from my nursing career and kind of derail that whole aspect of my life, but at least that was like my choice. You know, things weren't taken from me. But I can't quite explain it. And I know it's irrational. But I think I've mentioned before, like, when you got cancer, I felt like I had attracted cancer because I was setting out to be a cancer nurse. Like, I had purposefully taken a special class on cancer. I had volunteered on the cancer floor where you got treated; like, I picked the cancer clinical rotation. And then I just felt like, ah. Like I shouldn't have attracted cancer's attention, even though I don't even believe in that. Right? And it is hard because it adds a layer of guilt to like all of your joys too. I mean, you want to just have, like, unadulterated, pure joy about something like, uh, purchasing a home or having a child. But it's like if your loved ones are suffering, there's like a layer of guilt baked in. And maybe that's part of adulthood. Like, I think maybe that's why kids are the best at having pure joy. But yeah, that disaster magnet piece is irrational, but very much there to me. Like you posed a good question earlier about like, how do I and other siblings cope with these feelings? And I'd like to turn that question back on you. Circling back to our first topic. You know, how do you deal with the complexity of survivorship having lost friends to the same disease?
Ella 22:02
Oof, I wasn't ready for that.
Kayla 22:04
You came up with the question, so… [laughter]
Ella 22:08
No, I think it's a really important question. Honestly, I think one of the first things, and I think you were kind of getting at this too, is just like acknowledging those feelings. Like, I think that's the first step is like acknowledging that you're feeling guilty and even saying that out loud or writing that down in a journal or something like, I think even just the act of calling it out and holding space for those feelings and acknowledging, you know, that that's kind of what you're currently experiencing. I think that's a huge first step. In terms of other coping mechanisms, I mean, I think it's kind of just still a work in progress for me. You know, I think as I continue to live years out now from cancer, I think I still struggle with these feelings, you know, especially—we've talked many times about how certain dates and anniversaries can be really hard. And I think, you know, there's certain anniversaries where people passed away that just really hit hard still to this day, and I think probably always will. But in many ways I think that also is a reminder to me how precious life is and how we're not guaranteed any time here on earth, as we've also talked about before. You know, I think cancer for sure has made us value every single day. And as cliché as that sounds, it's—it's definitely true.
Kayla 23:52
Yeah. Thanks for sharing that. I would say that it's more of a posture adjustment to valuing every day rather than “I'm above menial frustrations,” because I think I used to think that valuing every day meant that like, you never got upset in traffic or like when you broke a dish or something. But that's just a human thing. But I think there's like a larger posture and perspective that's deeper for me from your cancer experience that I'm able to… I still will have those flashes of annoyance in life, but I'm able to move on from them quicker or not get stuck there or in negative patterns like that. Because you've seen how valuable and fragile life is.
Ella 24:48
Yeah. Well, thanks so much for sticking with us and unpacking and exploring some different aspects of survivor's guilt. For those of you who might be struggling with feelings of guilt around your loved one’s cancer experience or your own cancer experience, um, we just—we hold space for that. And, you know, if you want to reach out, we'd always love to connect as well. In the coming weeks, we're looking forward to a few special surprise episodes as well as continuing to unpack survivorship and share some resources. So stay tuned for all of that. And until then, have the best week available to you.