Updated: Sep 4, 2019
By Abigail Johnston
“Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not, often feeling self-guilt. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile. 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). It may be found among survivors of combat, epidemics, murder, natural disasters, rape, terrorism among the friends and family of those who have died by suicide, and in non-mortal situations.”
This is such a real thing amongst breast cancer patients and I confess that I had no real concept of how this works until the first person with Stage IV metastatic breast cancer I was close with died. I didn’t have much of a frame of reference for how I would feel about Kari dying. That was her name, Kari. Kari Roush.
I read once that when a person dies, there are three deaths: 1) when their physical body fails; 2) when the physical body is buried; and 3) when their name is forgotten. Kari has passed the first two deaths. As far as it depends on me, her memory will not be forgotten.
When I heard Kari died, it wasn’t a surprise. She’d been failing for weeks and she was home and cared for by her family and hospice. She was comfortable (as comfortable as possible) and she was ready to leave the suffering of her human body and go to be with Jesus in heaven.
She was ready, but I wasn’t.
Kari’s death hit me like a ton of bricks and I’d never met her in real life. We’d never even talked on the phone. We were literally strangers to each other except for the late night messages and discussions we had regularly. It felt weird that I was floored and felt so awful. It felt almost wrong, like I didn’t have a right to be grieving when I had such a small part of her.
Turns out, I was also dealing with survivors guilt in a big way. You see, Kari and I had nearly an identical diagnosis, hormone positive, her2- breast cancer that had metastasized to our bones only. We were even on the same medication. Yet, I was stable and she started having progression. Once the cancer left her bones, there wasn’t much time.
Others I know have lived for years with their cancer in various organs.
Others I know have bone only Mets that stay put for decades. Kari didn’t. Kari’s cancer started growing out of control.
Only God knows.
How am I different or any other patient? Again, only God knows.
What I know is that I felt for the first time in my life, when Kari died, that there was no reason it should have been her and not me.
And that sucked, big time. It still does.
I see friends around me dealing with progression, brain lesions, new organ involvement, lesions that are growing and lighting up. I see friends around me who are stable, some for decades. There are those who are diagnosed and die very quickly. There are those who linger, just hanging on. There are those who are living lives of meaning, working, being productive. There are those who can’t.
Nothing can predict reliably who will be an outlier and who will succumb quickly. And that sucks, really sucks. It sucks for the people who get so sick and their families and it also sucks for those of us left behind.
It seems to me that there is still some amount of stigma for those of us who struggle with survivors guilt. Somehow it seems to me that there is an expectation that we’d be able to move on, to shrug off the sadness and often paralysis when a person has died. I don’t know why and I don’t have answers, I just know that survivor’s guilt is a real thing and it is truly awful.
If you are dealing with the death of someone or even just struggling with sharing good news when people around you are struggling, it’s normal. To have survivors guilt or to struggle with feelings that others who are not metastatic don’t understand, is real, it’s natural and it’s normal.
There is help available. Reach out, ask for help, work through your feelings. Stuffing feelings of guilt, ptsd, etc only hurts you. No one else.
Ask for help.
For more writings by Abigail, visit her website at https://nohalfmeasures.blog/