Family Stories and Chronic Illness

The importance of shared narrative.

Reviewed by Monica Vilhauer Ph.D.

Key points

• Family stories foster a sense of identity.
• The process of telling family stories should incorporate attention, warmth, and perspective-taking.
• Family stories reflect family values.
• Family story-telling easily can be incorportated into family life.

“Tell me a story!” From the time we are young, we seek narrative. We look to stories to help us make sense of the world, to more deeply understand ourselves and others, and to expand our knowledge. We also enjoy the connection we feel in the story-sharing process: the warmth of a parent’s lap as they read us a book, the secrets shared with best friends at school, the emotional strength of knowing our loved ones’ stories and having them know ours.

Family stories — the intergenerational sharing of family history — have a special importance. We belong first to our families, and our experience as members of this particular group is potent. The content of family stories and the process of telling them are both important in identifying who we are and where we come from.

Family stories about challenges — including illness — help family members process painful events. Putting words to difficult experiences gives a sense of control and understanding (Trees & Kellas, 2009). Telling the painful story together is a relational experience in which family members grow closer.

The chronic illness of a family member affects the family as a unit. While the person living with disease has her narrative of illness, the other family members — parents, spouse, children, siblings — have theirs. These disparate narratives weave together — sometimes complementarily and sometimes contradictorily — to create a family story about illness.

How might we create and nourish our own family stories about illness? This post offers suggestions on facilitating these narratives.

Attention, Warmth, and Perspective-Taking

Talking together as a family about chronic illness should be a safe experience in which each person feels comfortable sharing her perspective. Attention should be paid to each speaker and can be indicated by eye contact, lack of distractions like phones, and lack of interruption. Warmth can be shown through gentle facial expressions and nonverbal cues like nodding. Turn-taking should be encouraged, with every family member having an opportunity to speak.

Perspective-taking should be modeled and, if necessary, explained. Perspective-taking is the recognition that every individual has her own thoughts, feelings, and interpretations of experiences (Trees & Kellas, 2009). It can be challenging to listen to a perspective with which you strongly disagree. However, listening implies neither agreement nor erasure of your own perspective. Get comfortable saying, “My experience of that event was different, but I am open to understanding the way that you felt about it.”

Perspective-taking also includes taking into account the developmental stage of each family member. Adults need to be mindful of not burdening children with information that overwhelms their capacities. In sharing family stories, it’s important to ask: “Is this information that is appropriate to share with my child?” Adolescents may opt out of family story-sharing. Understand that this is developmentally appropriate as they work to separate from the family unit.

Family Values

Our stories — and the way we tell them — convey something about our family’s values. Stories about illness often offer an implicit manifesto of how a family copes with difficult challenges. Family stories may marvel at the courage of the person living with illness; praise the steadfast loyalty of family members who care for the ill person; and underscore humor as a way of coping with hard times. The process of family story-telling about illness also communicates values: the value of communication; the value of sharing emotions; and the value of the family as a unit of support.

What values show up in your family stories, including stories of illness? Are there values that you would like to emphasize? This can be as simple as saying at the dinner table: “Remember when Dad was in the hospital last year? I was really proud of how you kids made him ‘Get Well’ cards. He was so happy when he got those.” This story emphasizes the value placed on acts demonstrating care. It also underscores the interconnectedness of family members, and children’s ability to have a positive impact on their parents’ lives.

Where to Begin

What stories does your family tell, including illness stories? What messages do those stories convey about your family’s values and identity?

If there is a silence around illness, why might that be? What are you communicating when you DON’T talk about illness — that it’s too painful to acknowledge?

What stories would you like to tell? Start with a “Remember when . . . ?” anecdote and see how other family members respond to your opening. You may prompt them, asking, “I wonder what that incident was like for you” or “What do you remember about that time?”

Encourage sharing stories at the dinner table about the day's events, no matter how mundane they may seem. The more that family members grow comfortable sharing (talking and listening to) stories, the more that narrative will come to be an important and generative part of family life.