Is it time to reassess the language of breast cancer?
This well-meaning provider had just diagnosed me with extensive ductal carcinoma in situ (DCIS) or stage zero cancer. Some doctors consider DCIS to be the earliest stage of cancer, but others consider it a precursor. The abnormal cells are “in situ” which means that they are contained in the lining of the milk ducts and have not become invasive.
There are different approaches to treating DCIS, from lumpectomies to mastectomies, depending on its extent throughout the breast. Sometimes DCIS just stays there; other times it becomes invasive, and sometimes the cancer goes away. Based on this information, I opted for active monitoring (also known as watch and wait). Things seemed stable for three and a half years, but eventually the cancer spread to my lymph nodes, which required a double mastectomy, chemotherapy and radiation therapy.
I am not at war with my body and I reject this language from the battlefield. I love my body and I work with it with love.
I had been deprived of my initial diagnosis, but as a longtime yoga and meditation teacher who helps students deal with seizures, I had to be open. The day before my operation, I shared a post on social media. I wrote about my years watching for cancer and explained that a double mastectomy was now my best option. Then I told everyone how to support me, “I ask people not to comment on my status as a warrior, a survivor or kicking my ass out of cancer,” I wrote. “I am NOT at war with my body and I reject this language of the battlefield. I love my body and I work with it with love.”
When I scrolled through the comments, I noticed some confusion within the support. I am aware that we used to describe people with cancer as victims. The linguistic shift towards warrior and fighter recognizes that people diagnosed with cancer are empowered and not doomed. The body as a battlefield metaphor is a big improvement as it has enlisted people as active participants in their health journey. Cancer has turned into something you could struggle.
As you can imagine, I had a hard time finding medical staff and relatives who understood how I felt about the language surrounding cancer, so I delved into the literature on the subject. In Susan Sontag’s 1978 essay, “Disease as a Metaphor,” she writes that “the defining metaphors in descriptions of cancer are in fact not economics, but the language of war: every doctor and every attentive patient knows, if perhaps accustomed to this military terminology. “Sontag goes on to list several examples, such as the body” attacked “and” colonized “by cancer, and the” defenses “of the body usually fail to “Erase” a tumor.
I recognize that the terms I oppose â warrior, fighter, and even survivor â are words that many people with cancer find empowering. I understand why: being open, infused with poisonous chemicals, and burnt feels like war. It’s a journey filled with struggles and the perennial question, “Am I going to get through this?” The battle terms reflect the heartbreaking hardship of our experience. Many of us want our loved ones to understand what we are going through because it is difficult and we need your compassion. I support anything that helps empower people during treatment. Anything that makes us feel stronger is the right choice. Use it. Say it. Hashtag. Do what you need to get out of it.
Yet I oppose the implicit violence that defines our bodies as battlegrounds and asserts that we are at war with ourselves as we try to heal. I understand why battlefield language is useful, but I suggest that there may be another way to define breast cancer that empowers us to Following.
A 2015 study published in Current oncology reports examined the role of stress in cancer patients. They have discovered that unmanaged stress can lead to worse clinical outcomes and advocate mind-body techniques such as meditation, tai chi, and yoga. Stress is detrimental to healing, and while research doesn’t address this specifically, I suspect imagining yourself in a perpetual state of war while being treated for cancer could make stress worse.
Additionally, language structures the way we think and talk about ourselves and the world around us. A 2013 study published in Psychological Sciences have found that the words we use to describe events and memories can influence our mood. In the study, participants who used the imperfect past tense to describe negative past experiences were more likely to feel unhappy than those who used the past tense. Saying “I cried” had a more negative impact on their mood than saying “I cried”. While not a perfect analogy, it hints at my hunch: the way we talk about cancer can inform your relationship with it.
I don’t want to be labeled by my illness or make cancer the axis around which my life revolves.
A package labeled Survivorship marked the end of my treatment – upon receiving it, I stepped back. The package contained a summary of my diagnosis and nine months of treatment. I have had reminders to schedule appointments with my many doctors and suggestions for nutritionists, social workers and support groups.
After flipping through the package, I thought about my reaction: what is the opposite of a survivor? A dead person. The survivor designation categorizes us as the undead. At a time that was supposed to be a new beginning, etiquette chained me to diagnosis indefinitely. I don’t want to be labeled by my illness or make cancer the axis around which my life revolves. I do not exist in relation to cancer, and just having been through cancer does not mean that my life should now be referenced in relation to this event. Being forever defined by an illness diminishes my complexity and my humanity.
The survivor is especially burdened because it allows people to believe that our life revolves around the diagnosis while providing comfort – the survivor means that the recovery is complete. In medicine, things have to be concise because communication has to be done quickly and efficiently. But cancer turns our lives upside down, and these neat terms and designations can be overwhelming. Cancer is embarrassing, and language should be anything but orderly.
Shortly after my operation, before receiving my trusty package, I had completely stopped looking at my body. I turned my back to the bathroom mirror as I bathed and dressed. So, I started a practice: I looked at myself in the mirror and put my hands on my scars. I looked and said to my body, âI love you.
At first seeing my new body was excruciating, but by claiming that I loved my body, I slowly started to let go of my old idea of ââhow I looked. I could lay down the armor that everyone told me required treatment and embrace the softness that healing needs. In Cancer journals, Audre Lourde writes about her mastectomy: âAny amputation is a physical and psychological reality which must be integrated into a new sense of self. After a few weeks of staring and crying, I started to feel tenderness towards my new body. Loving language was vital to my healing process. We cannot continue to fight forever.
Ultimately, the words we use help structure our experience. How do we want to get through cancer treatment? How do we want to live our life after cancer? Language matters. And I think it’s time we spoke to our bodies with more love.
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