Who Am I?

Patients can choose the label they want to use after a cancer diagnosis...And it may change.

Do you have a favorite children’s book? Perhaps one from your own childhood or that you read to your children or grandchildren. One of my favorites is You are Special by Max Lucado. The imaginary world Lucado creates is populated by small, wooden people called Wemmicks. Each Wemmick carries two boxes — a box of gold stars and a box of grey spots. (As a Type A overachiever, I was VERY interested in the gold stars). Every day, the Wemmicks travel through their town sticking stars or dots on each other — stars for the perfect Wemmicks and dots for the Wemmicks with chipped paint or a rough finish. As the story unfolds, we learn that love can make a Wemmick’s body impervious to these stickers. With unconditional love, the labels of others don’t stick.

Wemmicks handing out stickers in You are Special by Max Lucado

Two weeks ago,

Mo Collins

wrote about her GIST tumor diagnosis and treatment. In it, she describes how she felt when her cancer returned after she thought she was cured, “Can I tell you what was so hard? Feeling like a failure as a “cancer survivor”. That TITLE! I lost my survivor cred!!” The survivor sticker fell off.

Finding (and losing) a cancer-related identity is a struggle that starts the first time a doctor says, “You have cancer.” Patients often ask me when they are considered a “survivor.”  For patients like Mo experiencing a return of cancer, a piece of their identity ebbs and flows with their cancer status. For others, cancer leads them to tattoo ribbons or words on their bodies, permanently declaring this piece of who they are. For a growing population of people living with cancer, there doesn’t really seem to be a label yet. One patient told me “I am a bomb that exploded and ruined everyone’s life.”

But who cares what people are called? Isn’t everyone just a “cancer survivor?”

German researchers asked men who had been treated for prostate cancer to choose one of five cancer-related identities. Most patients chose “someone who has had cancer” or “patient.” A few chose to be identified as a “cancer conqueror” or “cancer survivor,” and those who did scored higher on overall well-being. Identification as a “victim of cancer,” on the other hand, was associated with higher rates of depression and a lower overall sense of well-being.

This finding is not universal, however. The type of cancer may influence the choice of label. In a recent study of adult survivors of childhood cancers, for example, most patients chose to be identified as a “survivor.” Like the above trial of prostate cancer survivors, however, those who identified as a “victim” were more likely to have worse overall mental health and were more likely to abuse alcohol.

In general, studies show that patients who align their identities with agency ("survivor") instead of passivity ("victim") have better emotional outcomes after treatment. A 2016 analysis of 23 papers looking at self-identity in patients after cancer treatment found that identifying as a “cancer survivor” was associated with a better quality of life. 

Sometimes I can hold it all
I know where I end and where I start
And sometimes it's all way too heavy
And I'm way more than the sum of all my parts

- Jennifer Nettles

Cancer is not what anyone expects. It is more beautiful, more difficult and more bizarre than anyone could have ever imagined.  Almost inevitably, patients tell me that what they expect at every single stage of treatment is not what they thought it was going to be.  And it’s not what people who are watching back on Planet No-Cancer think it is either. 

For this reason, I think it is important to listen to how patients want to be described during and after cancer rather than sticking our own labels on them.

For many patients, cancer causes them to examine their identity in an existential way. Considering who they want to be as life moves can mean preparing for a different future than they imagined before hearing the word “cancer.” Often patients undergo huge internal changes that may be unexpected to the care partners, family, friends and co-workers that are observing from the sidelines. In other words, their labels may change.

After listening to patients for over a decade, I know for sure that they have had an alien experience that cannot be forgotten. They’ve seen some shit. And it’s up to us to honor their experience and give them the time and space they need to decide who they want to be.

With our love and support, the only label that will stick is the one they chose.

On my mind…

According to my dashboard, there are many Cancer Culture subscribers in Maine. 👋 Robert McCloskey’s illustrations from children’s classics like Make Way for Ducklings and Blueberries for Sal are on display at the Curtis Memorial Library in Brunswick.

Controversial take: I don’t like Goodnight Moon. I would rather poke my eyeball out than read about how the bunny goes to bed. Anyone else? 🫣

Everyone has a different cancer experience. Sort of like with alien encounters.