As a cancer patient, I think a lot about how we talk about illness — or more often, how we talk around it. Even the word “cancer” is ugly, scary, burdensome — a roadblock for a conversation before it even starts. Who wants to go there? Much of the time, I’d rather not bring it up if I don’t have to — and I’m the one with the disease!
When the topic is a life-threatening disease, the instinct — for both the patient and non-patient — is often to freeze, and try to come up with a positive spin.
“I’m trying to think positive!” I’ll tell a friend, after listing the symptoms I’m having.
“I’m staying strong!” I’ll write in a text message.
“It’s tough, but I can do this,” I’ll say when I’m having an especially hard day.
No one coached me to say these phrases. So where did they come from? In the middle of chemotherapy, when I’m feeling my worst, why do I feel the need to inject these little nuggets of positivity into conversation?
Our culture is steeped in positive thinking — from the self-help mega-industry to college courses in positive psychology to the enduring pull of the American dream. There is no “dislike” button on Facebook. Nobody wants to be a downer.
But I don’t think it’s all cultural. When it comes to disease, I think the “positivity spin zone” is a force of nature. First, we want to protect the people we love. Cancer makes people think about mortality. It scares your friends and family. And many cancer patients, consciously or otherwise, try to buffer bad news with a dose of positivity. Putting a positive twist on how things are going is a way to convey hope. We want to be strong, to put on a brave face for our loved ones. Positivity is a signal that everything is going to be all right, even if no one knows that for sure.
The second reason, I’ve come to realize, is to protect ourselves. There’s no denying that cancer is a gloomy subject. We repeat positive phrases to ourselves as a sort of mantra. And while positive thinking alone can’t cure cancer, attitude is critical to getting through the process and growing as a person. We voice positivity as a show of strength in the face of the unknown. It’s a daily note to self: I’m going to beat this.
But while I have learned a lot since my diagnosis — and I am trying to be hopeful for the future — living with cancer is also just really, really hard. We don’t always talk about those times. We self-censor many parts of the journey. And when we do speak about it, we often find ourselves framing any negative thoughts in a more positive way.
Barbara Ehrenreich explores the limits of positive thinking in her book “Bright-Sided.” “We need to brace ourselves for a struggle against terrifying obstacles,” she writes, “both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking.”
Ms. Ehrenreich isn’t against lightness or laughter, but instead, she urges us to consider how positivity and denial can go hand in hand.
At what point is positivity a form of denial? Does positivity at all costs have a cost? I’m not a negative person, and I’m certainly not trying to set up a school for negative thinking, but today I’m giving myself permission to step out of the spin zone of positivity — to stare down fear, anxiety and dread without the guilt that I might be giving up or not fighting hard enough.
Just four months after a successful bone marrow transplant in April, I began a new course of chemotherapy that I will not complete until after my 25th birthday, next July. The good — clean bone marrow results in my latest biopsy — lives right next to the bad — the dread of more chemotherapy, which is meant to pre-emptively attack a disease with a high relapse rate.
There are moments of incredible brightness and gratitude. Too many to count, like the fact that I survived the risky transplant procedure or that my brother was a perfect 10-out-of-10 match on the donor scale. Or friendships of a higher level, like my friend Sarah, who has written me a newsy, thoughtful e-mail every day for more than a year. Or that I’m going home to upstate New York this weekend, not because I’m sick but because I’m well enough to choose to take a weekend vacation. But there’s also the reality of weekly hospital visits and the next biopsy on the horizon.
This reality isn’t positive or negative. It’s just another day in my journey as a cancer patient.
By SULEIKA JAOUAD AUGUST 16, 2012
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.