Keys to Communicating Your Sickness Story
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Receiving a cancer diagnosis is challenging. Finding the words to stutter out a new chapter in your story is also difficult. In our culture of fitness and wellness, what important things does a sick person have to say? Are there keys to communicating your sickness story so people will listen? I believe there are.
"The kids are struggling," I say to my husband, referring to grown children of a friend of mine. "They are unsure how to get their parents to talk about their mom's cancer."
"What do you mean?"
"Cancer has turned their parents' lives upside down, and everyone is unsettled and afraid from all the changes. The dad simply says they are taking it day by day."
"Maybe those are the words."
Now it is my turn to be puzzled. "What do you mean?"
"It sounds like the parents are at peace and living day to day is enough for them."
"The kids want more."
"Sometimes there isn't more."
Sometimes there isn't more.
My husband's words spoke truth I didn't want to hear, even after all these years of walking cancer journeys with our family and with friends. I always want more. Especially more words. I want to talk about it (or journal about it), to figure it out and make sense of the incomprehensible. There is a part of me that believes if I can tell the story again and again with more and more words--reworking the sentences--that perhaps I can create a different story.
And I am not alone.
One of the biggest challenges after a diagnosis is finding the words to describe an unplanned chapter in a life. And in the cases of a chronic or terminal diagnosis, it is not adding a single chapter, but rewriting the rest of the book.
Our culture is more comfortable with the language of the healed, so what do the sick and ill have to say? Who will listen?
How to you bring up the topic of cancer to friends and family? How do you talk about it? I remember stumbling around as a family when I was newly diagnosed and trying to find the words with my husband. With my parents. With friends. With my children, then ages 14, 16, 20 and 24.
Sometimes in an effort to empathize, friends and family say the wrong words. They ask the wrong questions. Or don't ask any questions at all. In talking with other cancer survivors, the wrong words sometimes left the deepest wounds and in many cases, damaged close relationships.
As those diagnosed, not only do we struggle not to be diminished by the disease of cancer, we also struggle not to be diminished by others' responses to our diagnosis and treatment.
"One of our most difficult duties as human beings is to listen to the voices of those who suffer," Arthur W Frank writes in The Wounded Storyteller. "The voices of the ill are easy to ignore, because these voices are often faltering in tone and mixed in message, particularly in their spoken form...."
We live in a fast-paced culture where listening at the best of times is difficult. Tech writer Linda Stone says that our brains seem stuck in "continuous partial attention." Add the complication of sickness, and communication proves to be an even bigger challenge. We each need help. The telling is not easy. Neither is the listening. Are there keys available for communicating your illness story? Your sickness narrative? Your cancer story?
I believe there are.
And I believe what you have to say is valuable.
For the next five weeks, I am going to be writing about Keys To Communicating Your Sickness Story. Each Thursday, I will be writing about the following:
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