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The Burden of Sympathy: How Families Cope With Mental Illness
What are the limits of sympathy in dealing with another person's troubles? Where do we draw the line between caring for a loved one, and being swallowed up emotionally by the obligation to do so? Quite simply, what do we owe each other? 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 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 the narratives, Karp sensitively explores the overarching question of how people strike an equilibrium between reason and emotion, between head and heart, when caring for a catastrophically ill person. The Burden of Sympathy 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 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.
Working from sixty extensive interviews, the author reveals striking similarities in the experiences of 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 the narratives, Karp sensitively explores the overarching question of how people strike an equilibrium between reason and emotion, between head and heart, when caring for a catastrophically ill person. The Burden of Sympathy 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 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.
340 pages, Paperback
First published October 1, 2000
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Displaying 1 - 13 of 13 reviews
July 25, 2011
I found the first-person accounts of individuals who have family members who are mentally ill to be touching, moving, and enlightening. Otherwise, the book was a bit dry and made some generalizations and analogies that I thought were a bit of a stretch. Bottom-line, every family's experience is completely different, and mental illness is very, very difficult to cope with in a family.
November 21, 2022
To families of a mentally ill person: if you feel confused, lost, if you face a moral dilemma, or, if you don't even know what to feel, then this is the book for you, even if you have already read several family guides on mental illness. David Karp does not provide coping strategies, much less detailed guidelines. He does not even promise hope. But he helps family caregivers understand their situations and feelings. For them, such understanding can be as precious as medication to the ill.
Taking care of a mentally ill person is anything but usual. As a result, caregivers run into all sorts of emotional irregularities. Some of them, such as being alienated to someone you once know so well, or pouring your heart out without being reciprocated with gratitude, are easy to describe. The measures to prepare for them have been discussed in other family guides. But as a sociologist, Karp identifies anomalies at a deeper level. Let me put his discoveries into two categories:
1. The standard rights and wrongs no longer apply. Many caregivers interviewed by Karp, agreed that the hardest part of caregiving is not knowing whether what you are doing is right or wrong. For example, seeing a family member in agony, one's instinct is to help them at any cost. But it's only a matter of time for caregivers to realize they will lose hold of their own life if they do not withhold certain types of care. They are forced to ask themselves, "what are my limits?" In this way, mental illness acts as a stern test of "how much we owe each other". For another example, caregivers often anguish over how much to intervene in the lives of their ill child, spouse, parent, or sibling. In the worst-case scenario, they have to call the police to handcuff their family against their wills. They feel terrible because they feel they have betrayed their family, no matter how much it seems the only way to save them.
2. The normal "feeling rules" no longer apply. Without those rules, caregivers do not know whether they should allow their feelings to linger, or they should suppress or transform them. They often have to reconcile their sympathy towards their family with exceptionally strong negative emotions, such as frustration, disappointment, and anger. Participants of the support group applauded spontaneously when a member announced she finally decides to take a vacation long-planned, because they understand how hard the decision is. Support group members persuade each other to take care of themselves and let go of the idea of taking control, yet they cannot stop worrying. They cannot stop feeling guilty when they try to compartmentalize their life as a means of keeping order.
Apart from the two major themes above, Karp describes many situations unique to family caregivers of the mentally ill. Below are just a few examples:
• Caregivers have to put our life on hold, missing the "appropriate" time to move through major points in the life course.
• Living with a mentally ill can feel like "walking on eggshells," not knowing "if it's okay to talk, to bring up subjects."
• "Hearing someone does not want to live hurt deeply because it seemed a denial of the redemptive power of their love."
• "Caregivers often become socially isolated themselves because of the unrelenting demand of caregiving, and the feeling that few people can understand their own turmoil."
• "one of the most awful features of dealing with mentally ill individuals who cannot recognize the severity of their own difficulty is standing by helplessly while they decompose."
• Caregivers "are forced into a state of unremitting hypervigilance as they wait for yet another crisis."
The most important lesson I learn from the book:
It's really, really hard, but a caregiver still needs to "impose order, coherence, and meaning onto a life situation that seems so utterly incoherent, problematic, and, literally, meaningless." They need to "give themselves permission to avoid having my own life destroyed by mental illness". In practice, it means a healthy balance between involvement and distance in their relationship with an ill family member.
Karp admits his book is limited by the sample of people he interviewed. Because he recruited them from the support group, they are perhaps the family members who are most invested. The persons who are most motivated to participate in his study are also likely to be the ones who are most burdened. Sometimes, the author's messages feel repetitive. The application of sociobiology theories, though appropriate in most times, can feel forced now and then, especially in the final chapter.
I also wish to read a book about silver linings. I can at least think of two. Caregiving pushes one to pay attentions to people's wishes, feelings, and concerns. After learning the absurdity of measuring and judging the achievements of their cared one in terms of social conventions, caregivers may gain the courage to break free from social conventions themselves.
Stray observation
- Women are often more involved caregivers than men. When men understand there may not be a "solution" to the problem, they burn out quickly and give up. But women are more tolerant and last longer. They also express more guilt for not caring "enough". It's hard to say how much of these difference comes from a born predisposition or from people's expectations of women to play the role of caregivers.
Taking care of a mentally ill person is anything but usual. As a result, caregivers run into all sorts of emotional irregularities. Some of them, such as being alienated to someone you once know so well, or pouring your heart out without being reciprocated with gratitude, are easy to describe. The measures to prepare for them have been discussed in other family guides. But as a sociologist, Karp identifies anomalies at a deeper level. Let me put his discoveries into two categories:
1. The standard rights and wrongs no longer apply. Many caregivers interviewed by Karp, agreed that the hardest part of caregiving is not knowing whether what you are doing is right or wrong. For example, seeing a family member in agony, one's instinct is to help them at any cost. But it's only a matter of time for caregivers to realize they will lose hold of their own life if they do not withhold certain types of care. They are forced to ask themselves, "what are my limits?" In this way, mental illness acts as a stern test of "how much we owe each other". For another example, caregivers often anguish over how much to intervene in the lives of their ill child, spouse, parent, or sibling. In the worst-case scenario, they have to call the police to handcuff their family against their wills. They feel terrible because they feel they have betrayed their family, no matter how much it seems the only way to save them.
2. The normal "feeling rules" no longer apply. Without those rules, caregivers do not know whether they should allow their feelings to linger, or they should suppress or transform them. They often have to reconcile their sympathy towards their family with exceptionally strong negative emotions, such as frustration, disappointment, and anger. Participants of the support group applauded spontaneously when a member announced she finally decides to take a vacation long-planned, because they understand how hard the decision is. Support group members persuade each other to take care of themselves and let go of the idea of taking control, yet they cannot stop worrying. They cannot stop feeling guilty when they try to compartmentalize their life as a means of keeping order.
Apart from the two major themes above, Karp describes many situations unique to family caregivers of the mentally ill. Below are just a few examples:
• Caregivers have to put our life on hold, missing the "appropriate" time to move through major points in the life course.
• Living with a mentally ill can feel like "walking on eggshells," not knowing "if it's okay to talk, to bring up subjects."
• "Hearing someone does not want to live hurt deeply because it seemed a denial of the redemptive power of their love."
• "Caregivers often become socially isolated themselves because of the unrelenting demand of caregiving, and the feeling that few people can understand their own turmoil."
• "one of the most awful features of dealing with mentally ill individuals who cannot recognize the severity of their own difficulty is standing by helplessly while they decompose."
• Caregivers "are forced into a state of unremitting hypervigilance as they wait for yet another crisis."
The most important lesson I learn from the book:
It's really, really hard, but a caregiver still needs to "impose order, coherence, and meaning onto a life situation that seems so utterly incoherent, problematic, and, literally, meaningless." They need to "give themselves permission to avoid having my own life destroyed by mental illness". In practice, it means a healthy balance between involvement and distance in their relationship with an ill family member.
Karp admits his book is limited by the sample of people he interviewed. Because he recruited them from the support group, they are perhaps the family members who are most invested. The persons who are most motivated to participate in his study are also likely to be the ones who are most burdened. Sometimes, the author's messages feel repetitive. The application of sociobiology theories, though appropriate in most times, can feel forced now and then, especially in the final chapter.
I also wish to read a book about silver linings. I can at least think of two. Caregiving pushes one to pay attentions to people's wishes, feelings, and concerns. After learning the absurdity of measuring and judging the achievements of their cared one in terms of social conventions, caregivers may gain the courage to break free from social conventions themselves.
Stray observation
- Women are often more involved caregivers than men. When men understand there may not be a "solution" to the problem, they burn out quickly and give up. But women are more tolerant and last longer. They also express more guilt for not caring "enough". It's hard to say how much of these difference comes from a born predisposition or from people's expectations of women to play the role of caregivers.
This entire review has been hidden because of spoilers.
October 31, 2021
Although overly academic in tone in some places, this is one of the most validating books I've read about this topic. It does not offer solutions, nor does it sugarcoat anything. And notably, it does not tell me all the things I should be doing differently or better.
Read
May 26, 2019Didn’t finish. Not a helpful guide for caregivers, just a book for scholars based on interviews of caregivers.
April 20, 2013
I'll start with the bad points of this book. The author is a sociology professor, and the book is really written for a scholarly audience, so it can be pedantic and unreadable (although much less so than a lot of books written by social scientists). Depending on your point of view, you might also find it a disadvantage that The Burden of Sympathy is really a summary of how the 60 folks profiled felt and what they did, with little analysis on the author's part of whether they're doing the right thing. This definitely isn't a self-help book written by someone who thinks he knows all the answers, but it might give you enough insight that you can discover the answers on your own.
Those cons aside, I found the book very thought-provoking and helpful. I've struggled with how much obligation/responsibility family members of people with mental illnesses have toward their less healthy compatriots, so seeing many other people's take was interesting. Karp's analysis is that each person's feelings of obligation differ, depending on factors like relationship (mothers tend to feel most obliged, children least, spouses and siblings in the middle) and gender (women are more likely to take on caretaking roles, perhaps because of lack of power which prompts them to learn empathy, perhaps because it is assumed that caretaking is a woman's role, or perhaps because women are simply hardwired to be caretakers). In addition, caretaking responses tend to change over the course of a family member's illness, as the caretakers realize that they can't do anything to cure or control the illness, that they might actually be making it worse through enabling behavior, and that the caretaker is making him- or herself sick through becoming too invested. Disappointingly for my black-and-white mentality, there is no one right answer for how much responsibility a family member has, but it helps to know that others are confused too.
The meat of the book aside, it also raises larger questions. For example, the author relates that the current emphasis on the family unit being responsible for its members is a relatively new phenomenon, with Industrialization having pushed us away from a community mode of obligation into a smaller family mode. Would it be easier to deal with mental illness in the community model, where presumably those without mental illness in their families would jump in to help those with? Karp also argues that Americans have a hard time figuring out our responsibilities because we're simultaneously told by society that our family is our primary obligation, but also that we are obligated to put our own self-fulfillment above all else. Is this American idolization of individuality why relationships of all kinds fail so terribly in our society? On the other hand, wouldn't we all really prefer that over having to live in a village with the same 50 people (45 of whom are probably annoying) all our lives?
Those cons aside, I found the book very thought-provoking and helpful. I've struggled with how much obligation/responsibility family members of people with mental illnesses have toward their less healthy compatriots, so seeing many other people's take was interesting. Karp's analysis is that each person's feelings of obligation differ, depending on factors like relationship (mothers tend to feel most obliged, children least, spouses and siblings in the middle) and gender (women are more likely to take on caretaking roles, perhaps because of lack of power which prompts them to learn empathy, perhaps because it is assumed that caretaking is a woman's role, or perhaps because women are simply hardwired to be caretakers). In addition, caretaking responses tend to change over the course of a family member's illness, as the caretakers realize that they can't do anything to cure or control the illness, that they might actually be making it worse through enabling behavior, and that the caretaker is making him- or herself sick through becoming too invested. Disappointingly for my black-and-white mentality, there is no one right answer for how much responsibility a family member has, but it helps to know that others are confused too.
The meat of the book aside, it also raises larger questions. For example, the author relates that the current emphasis on the family unit being responsible for its members is a relatively new phenomenon, with Industrialization having pushed us away from a community mode of obligation into a smaller family mode. Would it be easier to deal with mental illness in the community model, where presumably those without mental illness in their families would jump in to help those with? Karp also argues that Americans have a hard time figuring out our responsibilities because we're simultaneously told by society that our family is our primary obligation, but also that we are obligated to put our own self-fulfillment above all else. Is this American idolization of individuality why relationships of all kinds fail so terribly in our society? On the other hand, wouldn't we all really prefer that over having to live in a village with the same 50 people (45 of whom are probably annoying) all our lives?
December 29, 2020
A great book for anyone who has a family member suffering from mental illness.
Being a family member to someone with mental illness can and does have an effect on mental health of the carers/family members. From complex emotions one has to handle to having to take practical decisions.
While this book does not give a magic solution, reading extracts from various interviews the author held with 60 family members over three years by attending support groups, it firstly makes you feel not alone in the issues and emotions faced, and gives a sort of roadmap of the evolution of the disease and how it effects the ones closest, and can help along the way. I would certainly recommend this to anyone affected.
Being a family member to someone with mental illness can and does have an effect on mental health of the carers/family members. From complex emotions one has to handle to having to take practical decisions.
While this book does not give a magic solution, reading extracts from various interviews the author held with 60 family members over three years by attending support groups, it firstly makes you feel not alone in the issues and emotions faced, and gives a sort of roadmap of the evolution of the disease and how it effects the ones closest, and can help along the way. I would certainly recommend this to anyone affected.
August 20, 2010
Based upon three years of interviewing families affected by mental illness, Karp was able to identify unique challenges associated with caring for a child, sibling, spouse and parent. I wish that I had read this book earlier since it hit "home" to the feelings, reactions, and thought processes. On the negative side, Karp did interweave his own comments that related to his personal experience with depression, which was distracting from what I would consider the main theme of the book.
Note: I did not read the ebook, but the hardcopy version.
Note: I did not read the ebook, but the hardcopy version.
November 10, 2012
This is a must read for families struggling with the care of a mentally disabled loved one. It was comforting to read the quotes from those embroiled in the struggle of finding care, psychs, meds for mentally disabled loved one. I found some of his observations in the last chapter not so relevant as in much of the section "Taking Care: Whose Problem Is It Anyway?" I found the sociological treatise a bit pithy and the debate of personal responsibility vs state's responsibility tiring.
April 21, 2016
Somewhat disappointing. Reads like a sociological presentation which makes for factual rather than enjoyable reading. Based on the outcome of interviews with 60 people the highlights of the book were the snippets of the interviews where 'real people' shared their insights. Certain chapters were better than others. For example "The four c's" and "Surviving the system" both of which brought home just how similar things are for people dealing with mental health regardless of where they live.
Read
September 3, 2012The book really brings the reality of mental illness to light. The day to day struggles and internal battles of wanting to keep distance and yet being compelled to interact with the ill. It takes such a heavy emotional toll.
This entire review has been hidden because of spoilers.
May 8, 2015
Very thorough analysis with clear personal experiences which are easy to relate to. Good for both those experiencing these very serious, difficult and life changing problems and those who are professionals in several fields. New insights obtained.
January 13, 2010
The book is slow starting and rambling. The topic is of interest to me so I will read on.
Displaying 1 - 13 of 13 reviews