Breast Cancer, Breast Cancer, Triple Negative Breast Cancer, Meredith Cammarata, American Cancer Society

Breast Cancer, Breast Cancer

Breast Cancer Is Not a 'Battle' to Fight

Letting go of words like 'warrior,' could shift the cancer conversation. Here, a psychologist who has breast cancer suggests changing how we talk about it.

23/10/2021 4:02:00 AM

“We are not soldiers with weapons going to war with our bodies. It's not like I could go to the gym five days a week and somehow develop cancer-killing muscles.'

Letting go of words like 'warrior,' could shift the cancer conversation. Here, a psychologist who has breast cancer suggests changing how we talk about it.

, aimed to transform cancer victims into cancer survivors,” Walensky writes. A few years later, in 1993, the Atlanta Journal-Constitution covered a performance by activist Sharon J. Lang called "Women with Breast Cancer Are Warriors." The piece was in a showcase by queer Atlantans called “Together, Proud and Strong." At the time, the stance of the monologue was radical.

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It’s hard to pinpoint exactly what caused the proliferation of the term between the '90s and now, but some of it may be due to the increase in survivorship, and therefore an increase in the number of people whoneedAmerican Cancer Society(which, it should be noted, employs the use of a sword in its logo), “during the 1970s, about 1 of 2 people diagnosed with cancer survived at least 5 years. Now, more than 2 of 3 survive that long.”

The narrative dominance of these war-like terms may also come from our cultural tendency to eschew difficult emotions, to find a way to flip the script and search for a more "positive" angle, and to offer agency to people who feel as though that's been taken away at diagnosis. The genesis is understandable, but what is most interesting is how quickly this metaphor has become almost societally innate.

Story continuesOf course, for some, this rallying cry is motivational—a summons to gather the fortitude to face the diagnosis head-on, perhaps much the same way some people feel inspired by a coach shouting at them toward progress. But for others, this language doesn’t necessarily resonate or feel reflective of their experience. Some find the label of warrior to be laborious.

“There’s kind of a societal belief that cancer is a physical state that can actually be defeated,” explains Meredith Cammarata, LCSW-R, an oncology social worker at Memorial Sloan Kettering Cancer Center. “I think sometimes it comes from a need to gain control over something that, most of the time, is completely out of one’s control.”

But for those that don’t relate to this perspective, hearing this messaging constantly can make the already complex experience of having breast cancer even more isolating, confounding and depleting. “I could never get comfortable with the idea that people considered me a ‘fighter’ or ‘warrior’ against a thing I had very little control over,” says Rasee Govindani, 40, who was diagnosed with stage 3A estrogen-positive breast cancer five years ago. Which means this labeling can lead to a kind of cognitive dissonance that quickly takes hold. “If I was having a rough day—a day where I didn’t get out of bed—was I living up to this ‘warrior’ title?” Allie Brumel, 32, recalls asking herself that after she was diagnosed with stage 2 triple negative breast cancer at 28.

I could never get comfortable with that phrase, or the idea that people considered me a ‘fighter’ or ‘warrior’ against a thing I had very little control over.Many of the women we spoke to felt that this pressure, and the messaging surrounding it, is too binary for the profundity and messiness that is breast cancer. “It felt like an attempt to fit me and my story into a box,” Brumel says. This sentiment is common: “By categorizing people into ‘brave’ and ‘warrior,’ what this unintentionally does is tell the person how they

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shouldcope and how theyshouldfeel—it takes away from the person being able to describe their own feelings or their own individual experience with cancer,” says Cammarata.This framework also sets up a false dichotomy: that the “enemy” in this metaphoric war is your own body, as the cancer and its home in your breasts are inextricably linked. “We are not soldiers with weapons going to war with our bodies. It's not like I could go to the gym five days a week and somehow develop cancer-killing muscles,” says Govindani. “I didn't think my body got cancer just to piss me off.”

Caitlin Schenk, 35, who was diagnosed with stage 3 invasive ductal carcinoma last year, agrees: “I’m not trying to fight against my body,” she says. “I’m trying to workwithit.” Not to mention, this battle-laden premise leans on some very dangerous thinking if you start imagining the outcome of the so-called war.

“It doesn'twin;everyone's body fights it. Some bodies fight it better than others. But no one loses the battle. That makes it seem like they didn't fight hard enough, as if they didn't want to live as badly as those of us who are still here,” says Mari Rosales, 42, who was diagnosed with stage 2 invasive ductal carcinoma at 29. Cammarata sees the repercussions of this thinking frequently with her patients: “This narrative tends to assume that someone's positive attitude [alone] can actually defeat the cancer—and we

knowthat's not true.”Not to mention, the very idea of “fighting” in a marathon-length experience is daunting beyond belief, and breast cancer—from abnormal mammograms, sonograms, multiple MRIs, and awaiting results, to diagnosis, countless appointments, potential surgery, treatment, and the treatment’s many side effects—is already depleting physically, mentally, and emotionally. “I didn't want to fight. I wanted to curl up in bed and pretend I wasn't living this nightmare,” says Govindani.

Gearing yourself up for a fight that isn’t optional and that you still can’t fully wrap your head around is taxing enough, and for some people who aren't comforted by the warrior language, there is an additional layer of complexity added to this already intense, soul crushing exhaustion: having to keep up the facade of being a “fighter” for the sake of those around them. Friends and family often fear that any indication that the “fight” is too much for you is akin to letting the cancer win. “I can remember letting people use words like ‘fighter’ and ‘survivor’ even when they didn't resonate with me because it made

themfeel better, and I didn't have the energy to deal with canceranddeal with people's feelings,” says Govindani.There's an additional layer of complexity added to this already soul crushing exhaustion: having to keep up the facade of being a “fighter” for the sake of those around them.

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Patients invariably end up doing unwanted emotional labor, alongside having to navigate their own already-challenging feelings, a brutally unfair arrangement. “I have always been a strong person, but cancer isnotthe reason I am strong,” Bryant says. “It was exhausting having to go along with that constant dialogue in seemingly every human interaction that involved a discussion around my cancer. When people called me a warrior or kept going on about how strong I was, at times I would say ‘it's not like I have another option.’ But a lot of the time I didn't have the energy or mental capacity due to ‘chemo brain’ to clearly articulate this,” she explains. “I found myself working very hard to make other people comfortable,” says Rosales. “That is an exhausting way to live.”

This approach can also end up creating feelings of isolation—if people around you keep saying things that don’t feel right to you, you may end up retreating inward. “Any time someone else narrates or defines your own experience, it feels invalidating,” says Cammarata. "When you name the way a group of people should cope with something—and I find that a lot of my patients do feel pressure to fight or stay positive from well-meaning family and friends—you feel invalidated by them. And what I see is it actually leads to more emotional suffering, and makes people feel more alone.”

Another unintended possible consequence of the fighter narrative is that it may reinforce some ill-conceived notions about what strength actuallymeans—namely, that it involves suppressing vulnerable emotions in favor of stoicism. “I hated so much that the best way to make other people comfortable was to put on a brave face,” says Rosales. “I wanted to cry and be depressed and just be held.” And who says

thatisn’t bravery? “To me, being brave and strong is the ability to recognize feelings, be aware of them, and talk about them,” says Cammarata. By sending a message that strength is equivalent to emotional suppression, we may actually be cheating people out of an opportunity to do true processing.

So if this paradigm doesn’t serve everyone with breast cancer, whatarethe alternative ways to talk about it?Since the fighter narrative is so dominant culturally, Cammarata says that dynamic language may be a helpful alternative. “What feels right for you? How do

youwant to get through this?" she asks. "What tools have you used in the past to help with really difficult circumstances? There is no right or wrong way to cope with cancer.” Your approach can also be ever-changing: what resonates with you now may not in three, six, or nine months.

For example, “‘navigating’ works for me,” says Govindani. “It doesn’t promise smooth sailing. It doesn’t place responsibility on me to get through things a certain way.” And crucially, it doesn’t imply an end point. “This idea of conquering for survivors sends the message that whatever you are fighting is in the past,” says Brumel. “Yet when we’re talking about cancer, even if you are finished with active treatment, cancer will likely continue to be a very large part of your life. The appointments. The trauma. The fear of recurrence. The new sense of self.” And what patients say, over and over again, is they just want that ongoing instability understood, compassionately.

“I honestly don’t want to be called anything,” says Rosales. “Call me by my name and tell me you will listen to me complain, cry, laugh, scream, whatever. Openness is medicine. Vulnerability is medicine." She adds that there are other ways to save each other beyond being tough. "We can also do it by being soft,” says Govindani. “Being broken open and being met right there is a kind of magic.”

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