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Watch Your Mouth

Posted By Stephanie Trudeau-Hern, Tuesday, June 04, 2013

I am going to use this blog post to write about something that is very dear to my heart. The topic is how we communicate about illness: the rhetoric, dialects, and metaphors that riddle the conversations we have with and about a person who is diagnosed with a chronic illness. I will share with you a story, an analogy, some history, and finally a call to action. Some of my words are supported by research and literature, and all are based off of real conversations I've had with patients and family members impacted by a diagnosis of cancer. 

The Story:

"Stephanie, the reason you have felt sick is because your body has been lacking in proper defenses and your immune system has been taken over.  Cancer cells have invaded your body and have colonized into a tumor. Our plan of attack is to excise the mass and begin an aggressive regimen of chemotherapy and radiation. It is very important that you remain positive and keep fighting so you have a better chance at defeating this.” 

From this moment on, I am a woman with cancer. I am a cancer patient. My identity will be wrapped up in a culture of metaphors that feel terrifying and abrasive. I am now at war with my body. It appears that I only have two options: I can stay positive and fight for my life in the hopes of becoming a survivor, or I can fall victim to my disease. I wonder if in my eulogy they will say I fought a good fight…

An Analogy:

Truth be told, I've never had cancer, but a great deal of people close to me have. I have heard these words resonate in the halls, the exam rooms, and in the infusion rooms of the oncology center where I provide behavioral health services. I have met with enough people who have been diagnosed with cancer, and their loved ones, to know that the war-laden language of cancer has an impact, and from what I am hearing it may no longer be a positive one.

During my quest to explore the dialect of cancer I was honored to have a conversation with family scholar Dr. Jay Mancini. I shared with him a conceptual paper I’d been working on regarding this very topic. When we met, he didn’t want to talk about cancer. He wanted to talk about tomato blight. Tomato blight, he stated, was a common yet annoying problem for gardeners. Tomato blight is a rapidly spreading plant disease characterized by a rotting of the leaves and foliage. For decades frustrated gardeners accepted this as a consequence of humid weather. Eventually it was discovered that watering the tomato plant from the wrong direction causes tomato blight. When a gardener waters from the top of the plant, the force of the water causes dirt to splash back up onto the leaves, therefore spreading the organism that causes blight. By changing how the water was delivered, watering at the base of the plant, this annoying issue with tomato plants occurred less often.

He asked me if I understood his point. I didn’t, but he patiently allowed me to chew on it for a couple minutes. Then I got it; it made perfect sense. Maybe what we have been doing all along, which was to do what we knew how to do (watering from the top), was the very thing that was causing harm to our patients (the plants).  Maybe the main thing we need to do instead is to change the delivery of the language (water at the base).  Maybe we have been inadvertently and unknowingly harming our patients by the way we talk about their illness. 

The History:

In 1978 Susan Sontag wrote Illness as Metaphor. She posed questions about the benefits of war-laden language that had been attached to cancer. The metaphors of war had been used to communicate about tuberculosis. Now that the etiology of TB is understood, war metaphors have been transferred onto cancer and other illnesses. She discussed how using these metaphors created norms throughout society that may not have been beneficial to the individuals with the disease. By attaching war language to a physical illness, it is implying one either fights, or dies. One either survives or fails to thrive; that essentially only the strong survive.  

Prior to Sontag’s book, a political movement had started in 1969 with an advertisement to the Washington Post presenting a plea to President Nixon to reduce the secrecy of cancer and to put forth exposure on the veracity of the disease. In 1970 the "Moon Shot” campaign was launched. A large amount of government money was put into creating cancer research dream teams. It was like NASA for the cancer research community. The political call for answers and release of money to find a cure had solidified the rhetoric for the "war on cancer”. The 1970’s became the generation that no longer secretly whispered about cancer.

Sontag’s hope for the future was a movement beyond the limited language that had been created for cancer to include a broadened scope of actual patient experience. This was in 1978; 35 years later we are still using the same winner/loser language. 

So What?

While conducting a qualitative interview, I asked a widowed husband about his experience with his wife’s cancer. He recalled, "People say the dumbest things. When they would say, ‘keep fighting’ or ‘she’s a fighter’, I wanted to scream, ‘What do you think she is doing?!’ … To me it was as though they were implying that she was not fighting hard enough, that if she fought a little harder she should be able to beat this. I wanted them all to know that if cancer was something one could beat by sheer will and toughness, she would have been the one to do it. She did not fail to fight hard enough. Cancer was just better; cancer won.” He then said, "Still to this day when I hear the words, ‘stay positive’, or ‘keep fighting’, it makes me want to jump out of my skin.”

When an individual’s identity becomes rooted in metaphor, the metaphors themselves become the basis of communication within their social system. Metaphors are critical to our sense of meaning making. It helps us assign something we are familiar with and gives language to what we cannot explain. I have sat with many women who are breast cancer "survivors”. I hear from them that the war metaphors have become emotionally grating. I’ve had women tell me that they do not feel that they deserve all that comes with the "survivorship badge.” One woman in her early 30’s stated that she would rather be called a "thriver” or an "overcomer”. When it came to her illness and the treatment she received, she felt she did what she had to do. Nothing she did was superhuman; it was the luck of the draw that she no longer has cancer, when others around her died from cancer. She didn’t want to be seen as something special, being labeled a survivor was too much for her. She didn’t feel that she fit in the same category as all the other women who take ownerships of their survivorship badge. 

We have yet to develop a broader and more helpful way to communicate about one of the most feared diseases of our time. As clinicians and providers we are often the ones who begin the communication around a diagnosis.  We are the ones who introduce the language, the metaphors, and the rhetoric to patients and their families. I say let’s do better; let’s ask the ones with the diagnosis what language and metaphors work for them. Let’s start watering from the bottom!


Diedrich, L. (2007). Treatments: language, politics, and the culture of illness. University of Minnesota Press: Minnesota.

Ehrenreich, B. (2009). Bright-sided: how positive thinking is undermining America. Picador: New York.

Mukherjee, S. (2010). The emperor of all maladies. Scribner: New York. 

Sontag, S. (1988) Illness as Metaphor and AIDS and Its Metaphors. Picador: New York.

Stephanie Trudeau-Hern, MS, is a doctoral student at the University of Minnesota in the Department of Family Social Science - Couple and Family Therapy Program. Her clinical and research interests include caregiver well-being, family coping with chronic illness, end-of-life issues, and provider self-care within collaborative health care teams. She credits her two little monkeys for being the most influential teachers of life, love, play, and well-being.

Tags:  cancer  communication 

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