“Survivor’s guilt manifests in many ways. To me, it is a reminder that I am cured but not necessarily healed.”
By Maggie Rogers, MPH, End Well ePatient
The notification pings on my phone. A new post in an online Facebook community of over 2,000 people. An enthusiastic, compassionate, and often comical community that shares a common thread of being young, impacted by cancer, and an adoration for outdoor adventure and a non-profit called First Descents. We call it the “coolest club no one wants to be a member of” because, after all, you have to get cancer to join.
Last year, Maggie shared her patient story with us. Click here to learn more about her childhood cancer experience.
I check the post, thinking maybe it’s a fresh cancer meme, a welcome and much-needed laugh during a busy day at work. Instead, I’m met with a post letting us know that we’ve lost someone. One of us has died. From cancer, of course: our common thread, our membership card. A lump forms in my throat, and I start to cry at my desk. My grief is not easily explainable. I did not know her.
When I get home, I click on the linked name and go down the rabbit hole of social media. I figure out what type of cancer she had and how long she had been living with it based on her profile pictures stickered with cancer ribbons. I read her posts about remission and the later ones about recurrence and metastasis. I look at the smiling photos of her with her small children. I click on her last fundraising campaign to see how much money she raised. I read her obituary and the latest update from her husband, now a widower. I go back to my online community page and read the comments on the announcement of her death. It’s instantly clear that she was beloved. Adored by all who met her. A significant loss to our community. The tears continue.
The emotions all hit me at once: relief that it isn’t me, anger for thinking so selfishly, stupidity for grieving like this over a stranger, disgust for peering behind the curtain into her life, and an overwhelming loss of control. I think of others we’ve lost within First Descents and those I’ve lost long before finding this community.
But most of all, I feel the strong and familiar pang of deep guilt about surviving something that someone else did not. It’s the kind of guilt that makes absolutely no sense and at the same time, makes all the sense in the world. Logically illogical. I begin to dismiss my own cancer experience as being unworthy, for not being “hard enough.” I didn’t die. Why me? Why not me? I feel a bizarre sense of responsibility for her life.
Survivor’s guilt manifests in many ways, the most typical is feeling guilty for surviving something when others have died. It’s common in communities of cancer survivors, but not often addressed by our medical teams. To me, it is a reminder that I am cured but not necessarily healed. I know that I am not alone in these triggered feelings of anguish and self-doubt. I know that others in our group saw that same post and felt that same sense of deep sadness, followed by that same deep guilt. And I know how difficult it is to dissect.
Being a member of a community of people with serious illness, such as my group of young adults with cancer, is bittersweet. On the one hand, the sense of connection, belonging, and community is overwhelming in the best ways. People understand you on a level that’s not possible unless you’re one of “us.” On the other hand, we lose people at rates that feel preposterous. Unlike survival rates in adults and children, the survival rates for young adults with cancer have not improved in decades.
We exist in the dichotomy: To be without community means isolation, to be with community means recurring grief. For me, the pros always outweigh the cons.
So I take a moment to acknowledge the guilt, it is here, and it is very much real. But it does not mean that I need to justify my survival. It doesn’t mean that I owe anyone or even myself an explanation. Life is uncertain, and sometimes, there are no answers. It is okay to celebrate your survival and feel happy. It is okay to recognize that the things that come with survivorship, like guilt, are terrible, but normal. It is okay to feel sad when someone dies, even if you didn’t know them.
In a few days, I’ll be back on our community page laughing at gifs and swapping cringe-worthy and often embarrassing patient stories. Until then, I will grieve the loss of this stranger whose life is inextricably linked to mine and cope with the bittersweet guilt of being alive.
Maggie Rogers is a childhood cancer survivor and public health researcher. Propelled by her own experiences as a patient, she dedicates her time to improving the quality of life for people living with a serious illness. Maggie is currently the Director of Research at the Center to Advance Palliative Care (CAPC) in NYC.