Caring Responses to "I Have Cancer, Parkinsons, Alzheimer’s"

Searching for Words

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Almost 20 million people in the United States live with cancer, Parkinson’s, or Alzheimer’s, the big three “bogeymen” illnesses, still spoken of in hushed tones, as if whispering might make them less devastating.

When someone shares a diagnosis with you, your first thought might be, “Why are they telling me they have this horrible illness?” Followed by the gut-wrenching: “What should I say now?”

Why Are They Revealing a Diagnosis?

Revealing one’s catastrophic illness is not simply a decision to be open rather than remain private. The decision is often based on the collision of two expectations: the world the person anticipates occupying with their new identity and the reactions they believe you will have to it. That’s a whole lot of “what ifs.”

Think of the revelation process as similar to two jazz musicians about to perform a piece they have never played together. They both know the tune’s melody, but the embellishments will be improvised as the piece progresses. Musician A begins with a solo, and Musician B reacts to it. From beginning to end, the response of one musician depends on the notes played by the other. Little will be predictable other than the tune’s beginning and ending—just like the interaction between you and the person revealing the diagnosis.

When the musicians are synced, a memorable performance occurs. When you and the person who revealed her diagnosis sync, both emotionally grow from the experience.

So, here are some guidelines to make the sync more likely.

Don’ts

Don’t Minimize the Diagnosis. Some well-meaning and sensitive people try to minimize the magnitude of what is being shared by saying words such as, “Oh, don’t worry, we’re just around the corner from a cure.” Or, “Let’s hope for the best.” The rationale for bubbly thoughts such as these—often reinforced by medical practitioners—is that it’s always best to be optimistic.

Few people share their diagnosis to receive expressions of false hope. Most yearn for interactions with someone who will be supportive yet willing to accept uncomfortable truths.

Don’t Search for the “Right” Words. Often, there is an awkward moment when people hear someone is living with these or other dreadful illnesses or expects to die from them. Some listeners hear the diagnosis and become silent as if struggling to find the right words. The search for the “right” words is futile. There are none.

Instead, base your response on understanding the enormous changes the person anticipates experiencing. It may involve words, a hug, or even a compassionate expression.

Do’s

Understand the Changes. When I first started playing the shakuhachi (Japanese bamboo flute), I struggled to produce the “right” notes for a song I was learning. My teacher, who is not only a great musician but also a wise philosopher, said, “Stop worrying about the notes. Think about how you would play the song for your child when he was a baby.” For my teacher, notes came from one’s soul, not from the flute. The same applies when deciding what to say or do.

The words and actions are secondary to understanding how a person’s life changes with the diagnosis. Understand these changes, and your response will flow like the notes.

Understand How the Anticipation of a Shortened Lifespan Affects Everything. Instead of having a lifetime to make up for regrets and achieve goals, time may be limited. In Steven Levine’s book A Year to Live, he asks readers how they would change their lives if they knew it was limited to one year. People who reframed their lives this way completed the experiment with different priorities than when they viewed their lives as limitless. Tibetans have a saying, “Tomorrow or eternity, we never know which will come first.”

Unfortunately, changing priorities in chronically or terminally ill people are often misunderstood. What had been thought necessary may now be meaningless, and things taken for granted before the illness may become extraordinarily important.

The Take Away

The “right” words and actions will emerge if you start with a basic understanding of how the cited and other catastrophic illnesses change a person’s worldview. Although the full effects of the illness may be in the distant future (e.g., Parkinson’s may take ten years to develop fully), the person with the illness lives in the present with the anticipation of a radically changed or shortened future. Understanding their anticipated world should guide your interactions as a compassionate friend.

Someone once asked the Vietnamese Monk Thich Nhat Hahn to define “compassion.” He said to think about the person you are talking to as if he or she were your mother, who fed and cared for you when you couldn’t do it yourself.

Take his advice, and don’t worry about the right words or actions. When you hear “I have cancer, Parkinson’s, or Alzheimer’s,” visualize that it’s your mother saying the words. And if you still can’t imagine what she feels, ask the courageous person who revealed the diagnosis. She wouldn’t have shared something this personal without being prepared to answer the question, “How do you feel about it?” And so your compassionate improvisation begins.