Many burdens fall our families as we live with chronic illness, aside from the obvious ones of increased demands upon resources of money, time, and physical energy. An unexpected stress is the issue raised by chronic illness of family membership and participation. Questions of who is in or out are more important than they seem at first glance.
When I have asked people whom they consider to be family, the common response is, “It depends.” In a conversation with Sheila, I gave a quick definition of family as “people whom I particularly care about and toward whom I feel greater obligation than others.” I added that I am more intimate with many friends than I am with some family members, but that I am likely to assume greater responsibility for the latter in times of crisis or need.
Sheila, on the other hand, stressed qualities interdependence and intimacy in characterizing family She was put off by my term “obligation” because it implies acting from a sense of duty rather than out of what she called a “wish.” Discussions about who is a member of the family are not of minor importance: they can influence in crucial ways both the nature of the illness experience of the person diagnosed and the possibility of illness among others as well.
Some of us consider certain people who are related by neither blood nor marriage to be family and expect from them a reciprocity of feelings and responsibilities. Godparents and unofficial uncles and aunts quite often have this status. Thinking of a family as a fixed entity hides its diversity and flexibility and the ways in which family members function within and between networks. It plays down individual differences within a family— as well as the rich connections that many people have with a number of different families—and impose on it concepts that often do not resonate with the ways in which its members make sense of how they live.
I find the more concrete images and metaphors of braids, ladders, tapestries, and gardens helpful. in working with individuals, couples, and families. Questions about current and older friendships and acquaintances are often as helpful as ones about family of origin, particularly when families must identify potential sources of short- and long-term support. Relatives frequently give enormous help in times of acute crisis, but their visits may be intermittent if they live far away. Families may want and need to use friends who are more nearby.
To the Romans of classical times, familia referred to the “‘house and all belonging to it.’ Just as many families do today, Roman families also considered domesticated animals to be a part of the family. Relationships between children and their dogs, cats, or horses, and memories of those ties, can easily generate more emotion and meaning than the connections between siblings.
“What is the right thing to do?” and, “What kind of person (father, mother, son, daughter) do I wish to be?” are moral questions. In the course of everyday life, our behavior implicitly poses such questions, with little reflection on our part. It is through the answers we receive, from others as well as ourselves, that our character, self, and family are formed.
Our families are the places where we first learn and express our character. My family is a social space where we learn and practice ways of caring, making sense of what is worthy of honor, and confronting shame. In our families we learn, or not, from each other a sense of fairness, reciprocity, generosity, and commitment.
In most people’s encounters with chronic illness, making moral judgments is not an abstract process. The arguments that break out between family members, between friends, and even within ourselves, are usually ambiguous and more crucial to living through the illness experience than the thinner cases discussed in medical and ethical journals. In our families, decisions are made and actions taken that may not in the best economic interests of either individual family members or the family as a whole. Parents willingly make monetary sacrifices for the sake of their children. Many of us and our family members give up our own needs for individual achievement or remain in difficult relationships for the sake of more vulnerable others. We are not, from the point of view of economic theory, “rational actors.”