The Burden of Sympathy: How Families Cope With Mental Illness

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Summary: Have a mentally ill family member? Then chances are...
Review: ...you will find part of your story in this book. A second reading may be required to appreciate its sociological insights. My primary satisfaction in first reading it was actually hearing about others who've had experiences similar to what have been the most defining yet harshly individuating and closely guarded experiences of my life. Especially poignant were the first realizations of serious mental illness, but the ongoing survival stories were important as well. As many stories as were outlined, I was still left wanting more. ...

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Summary: Breathtaking book - a Must Read!
Review: David Karp promises no easy answers, but he is unquestionably our most eloquent chronicler of mental illness. I had to take a lot of deep breaths as I read this book. It is full of gripping stories about the daily crises and terrible contradictions faced by anyone living with a mentally ill family member. The book moves between personal narratives and cultural analysis to explore what we owe the people we love. If you are a caregiver, or simply a reader who is puzzling through the question of commitment and moral obligation in your own relationships, you simply must buy and read this book.

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Summary: Excellent picture of today's realities -- NOT for guidance
Review: In _Burden of Sympathy_, sociolgist David A. Karp presents a well-articulated view of how people today are trying to cope with mentall illness in their families.

However, it's important to note that the mental health system generally provides little help for *families* of the mentally ill, so the many people Karp interviews are very much trying to learn to cope. Therefore, this is not the book to read if you're looking for guidance. It is, however, a revealing picture of what it means to have mental illness in one's family today.

For example, this book's focus in on the caregiver and his/her relationship to the patient. Almost no one is prepared for the personal, spiritual, moral and emotional challenges (not to mention financial) that seem to burst on you when someone you love has a mental illness. The people in _Burden of Sympathy_ have not gone the whole journey, and this is particularly reflected in one mother's account. She and her husband are not able to fully acknowledge their son's illness until he cruelly -- and possibly life-threateningly -- attacks his brother. The mother expresses concern that because she is completely enveloped in caring for her ill son, that she's failing her other children.

The effect of mental illness on families is almost a system in itself, and due to the focus on caregiver-patient in this book, that system is not illuminated. Children who do not play a caregiving role are also profoundly affected and challenged, and have needs of their own that often are not met -- with consequences casting a long shadow over the rest of their lives. I hope David Karp will explore this issue in future books.

In addition, many of the other inteviewees are also completely enveloped in the mentally ill relative -- with hard consequences for their other relationships and lives. This, in my opinion, is where we are most challenged and most ill-equipped to deal with mental illness in our families. How do you get to acceptance? How do you distinguish your needs from theirs? How do you maintain that balance? How do you embrace the "4th C" (detailed in this book) of "All I can do is cope with it [the situation]"?

_Burden of Sympathy_ is a beautifully drawn picture of how caregivers attempt to cope. This book won't offer guidance in coping, but will offer you the solace of knowing you're not alone.

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Summary: Truthful
Review: The Burden of Sympathy is an essential book for those with mentally ill family members, and even the ill themselves. I have learned so much about the similarities in care taking difficulties, and feel I understand more why I feel compelled to care, and when it's ok to let go. A must for anyone dealing with illness.

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Summary: Like Being in a Support Group
Review: To write this book Karp, a sociologist, performed three-years' worth of in-depth interviewing of family members of mentally ill patients and attended support groups among these family members at McLean's Hospital in Belmont, MA. He also read extensively on mental illness and living with mental illness, mostly from sociological literature and some from medical books and a few medical journal articles. When I first looked at the book at the library, I noticed the chapter called "The Four C's." Looking at this chapter was what caused me to take the book home. I ended up reading almost the entire book carefully.

Throughout the book, Karp discusses and quotes 60 caregivers (by "caregivers," I mean someone with a close relative with mental illness) talking about their relatives and about their own feelings, always focusing on the caregivers' reactions to the events surrounding the illnesses. Karp's main concern is with the obligation family members feel toward their mentally ill relative(s) and with how these family members cope with fulfilling their obligations toward the ill person(s) while trying to live their own lives. One theme that reappears often is that many mentally ill persons refuse to acknowledge their illness at one level or another, thus making their familial caregiver's role more difficult. This includes elderly parents who refuse to get help as well as young spouses with manic episodes who place blame on their healthy spouses. Another theme is the evolution of family caregiver emotions, from those of surprise and pain and hope at first to resentment and even severing of relations in some cases.

Karp notes that parental care and obligation is the strongest of the familial ties with the mentally ill. He also covers numerous siblings, spouses, and children of people with mental illness. Some of the interviewees have both a parent and a sibling with an illness; some of these people are living with the fear of suffering the development of the illness themselves. Many wrestle with depression, seemingly as a result of their problems with their sick relative.

Most of the patients related to Karp's interviewees have depression, mania, schizophrenia, or some combination such as bipolar disorder or schizoaffective disease. Most or all have had hospitalizations. Karp manages to cover a wide range of family relationship and ages with most of the concepts he introduces, thus emphasizing the similarities among those involved with mental illness in the family. The level of illness discussed is generally major.

This book is not for the faint of heart. It is powerful and brutally honest, with no happy ending or false hopes. Another strong theme in this book that is visited over and over again is the chronicity and incurability of much mental illness. Quote after quote from the family members discusses early hopes of cure that are dashed by later episodes of illness, medications that work for a while and then stop working or never work at all or cost too much, and hospitalizations that accomplish little besides crisis intervention. At the beginning of each support group meeting Karp attended, the members of the group recited the four C's in unison: "I didn't cause it. I can't cure it. I can't control it. All I can do is cope with it." This is probably the most important part of the book for family members of mentally ill persons. Karp discusses the four C's extensively, claiming that they unite the realms of "...science, therapy, and spirituality." He discusses cause, cure, and control separately. The lack of a section on coping at this juncture is curious; it may imply that the entire book is about coping or that Karp doesn't feel equipped to offer coping advice.

Reading this book was the closest experience I have had to attending a support group of family caregivers for mentally ill persons. As I read the chapter about the four C's, I could feel my own relationship with the four C's. Although I tried hard to consider myself an outsider, I was surprised at how many of the issues addressed in the book are ones that I am familiar with. Reading this book, I felt like part of a group that I would rather not be part of. Because of these feelings, I think other people with mentally ill family members might get something out of this book, but I am not sure a psychiatrist would be comfortable recommending the book.

Along with the four C's, Karp and his interviewees discuss a poignant group of problems that family caregivers face, such as the balance between allowing a person with mental illness to be independent and keeping him or her safe but dependent. Karp claims that, for the family caregivers, too much control results in being controlled by the illness. He acknowledges, however, that giving up control is not simple, as it may result in severe consequences for the patient, which can then tax the family.

The last chapter containing caregiver quotes is called, "Surviving the System." This section covers the family members' experiences with hospitalization, including the difficulties of getting a patient hospitalized sometimes when it is needed as well as insufficient care often encountered during hospitalization. A section is devoted to discussion of psychiatrists. Although most of it is not complimentary, Karp is careful to include some praise of psychiatrists.

Karp concludes with a sociological perspective on mental illness, somewhat summarily. The only optimistic aspect of this book is in the form of Karp admitting that he has heard of a few success stories. He mentions a few people who seem to have conquered these usually devastating mental illnesses, and he includes successes where he finds them. The book is not pessimistic, either. It is alive with the voices of people who are grappling with mental illness in a loved one. The book offers company and understanding, if not solutions, for family members of mentally ill people.