The Burden of Sympathy: How Families Cope with Mental Illness

The Burden of Sympathy: How Families Cope with Mental Illness

The Burden of Sympathy: How Families Cope with Mental Illness

The Burden of Sympathy: How Families Cope with Mental Illness

Synopsis

In this vivid and thoughtful study, David Karp chronicles the experiences of the family members of the mentally ill, and how they draw "boundaries of sympathy" to avoid being engulfed by the day-to-day suffering of a loved one. Working from sixty extensive interviews, the author reveals striking similarities in the experiences of caregivers: the feelings of shame, fear, guilt and powerlessness in the face of a socially stigmatized illness; the frustration of navigating the complex network of bureaucracies that govern the mental health system; and most of all, the difficulty negotiating an "appropriate" level of involvement with the mentally ill loved one while maintaining enough distance for personal health. Throughout, Karp sensitively explores the overarching question of how people strike equilibrium between reason and emotion, between head and heart, when caring for a catastrophically ill person. The book concludes with a critical look at what it means to be a moral and caring person at the turn of the century in America, when powerful cultural messages spell out two contradictory imperatives: pursue personal fulfillment at any cost and care for the family at any cost. An insightful, deeply caring look at mental illness and at the larger picture of contemporary values, The Burden of Sympathy is required reading for caregivers of all kinds, and for anyone seeking broader understanding of human responsibility in the postmodern world.

Excerpt

As little as we know of illness, we know even less of care. As much as the ill person's experience is denied, the caregiver's experience is denied more completely.

ARTHUR FRANK, At the Will of the Body

The sequence of events beginning nearly four years ago in Leslie's life was not unlike the plot in a Steven King novel. At first, the incidences seemed pretty insignificant, although each did cause momentary wonder and worry. After a slightly unsettling event, life returns to its normal, relatively uncomplicated rhythm. At a point, though, the disturbing events become more frequent and seem to constitute a pattern. Characters may now begin to confide uneasy feelings to each other about what has been happening, while finding ways to deny that anything is badly amiss. At a point, the scary problems become so intrusive that the now badly frightened characters know something must be terribly wrong, although they still can't comprehend what is going on. They begin an earnest search for answers, but the underlying cause of the expanding strangeness eludes them. Finally, such awful events occur that life becomes a frantic effort to solve, escape, or somehow eradicate the clear horror that now dominates every waking moment, even haunting their dreams.

Because of the sheer complexity of her son's illness and her need to talk about it, Leslie and I spoke on three separate occasions. Near the beginning of our first conversation she said that “so much . . .

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