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Photo of David Karp
Both Sides Now

In his 1996 book Speaking of Sadness, Boston College Sociologist David Karp described the experience of clinical depression -- his own and others'. In his new book, The Burden of Sympathy, he examines the experience of mental illness once-removed, through the eyes of sufferers' families.

AN INTERVIEW BY ROBERT COHEN

. Does severe mental illness in a family carry with it burdens that are different from those associated with a physical illness?
As terrible as serious physical illness is, normally the physically ill person acknowledges that he or she is ill. Very few people deny a diagnosis of cancer.

But often one of the huge problems for the family of someone who is severely mentally ill is that the sick person denies the diagnosis of mental illness, is unwilling to comply with medication, and -- maybe hardest to take -- treats caregivers like the enemy.

When family members do something for a physically ill person, they most often get gratitude. But mentally ill people tend to be resistant. They can often be angry and hostile. And, of course, they are engaging in behaviors that are likely to be extremely distressing. Virtually by definition, mentally ill family members are upsetting the coherence of everyday life. I'm talking about individuals who are throwing bricks through windows or jumping out of automobiles or trying to commit suicide.

There's still a stigma attached to mental illness that doesn't attach to ordinary illness, isn't there?
Yes. But I think that is changing.

There are more stories about mental illness in the media. Public figures like Mike Wallace and William Styron have come out and described their depressions. I hope that the stigma and the isolation and the secrecy and the silence are diminishing, because when families are made to feel that they can share their experiences with others, their burdens are lessened.

You write that mental illness is a contagious disease in its effects. How do you mean that?
Mental illness is transmissible in the sense that once you are willing to care for somebody who is mentally ill, that person's story becomes your story. Your biographies become intertwined. I've been observing a support group of friends and family of people with mental illness for almost four years. I would say that of the 60 family caregivers whom I interviewed for my book, including members of this group, 30 are now being treated for depression -- at least partially brought on by the strain of caring for their loved ones.

How do family caregivers go about managing their own emotional responses? You talk about resentment, anger, even hate.
I'm interested in how emotions unfold over time. Caregivers may feel anger, frustration, sympathy, love, compassion, and, yes, hate -- but they don't feel them all at the same moment. When mental illness first comes home, most people don't know what to think; all they know is that they're confused, that their world has been turned upside down. After there is a diagnosis, people respond as they would to anyone with a medical condition, and sympathy becomes the more dominant emotion. Further down the road, one of the complexities for family caregivers is that they begin to feel emotions they don't think they should be feeling -- like sometimes hating somebody they're supposed to love.

I want caregivers to see from my book that the emotions that they think are so idiosyncratic are shared by lots of people, and that they are not inappropriate, not inexplicable, not wrong, not bad.

So there's a heavy burden of guilt about feeling anger and resentment?
It goes along with other kinds of guilt that family caregivers of the mentally ill feel, such as, How might I have caused this problem for this person in my family? The people who are most likely to feel that kind of guilt are women -- because women are expected to be the caregivers in society. When a child is having a lot of trouble, mothers get blamed a lot. And they blame themselves.

There's guilt around, Am I doing too little? but also, as you write, around, Am I doing too much? Is it possible to care too much, to be too involved?

Yes. The underlying thread of this book is really how people draw boundary lines between themselves and another person, boundary lines of obligation and responsibility and sympathy: How do I honor a commitment to help somebody that I love without becoming engulfed by their misery? Family caregivers learn quickly that wherever they try to draw that line, the unpredictable winds of mental illness come in and blow it away. People have to keep redrawing the boundaries.

And line-drawing is different for men and women; it's different for parents than for people dealing with a sick parent or a spouse or a sibling. There is a kind of hierarchy of expectations about who owes what to whom. I'm interested in how people create a calculus of care: how they decide, essentially, what they owe another person in their family.

Sometimes people have to do the emotionally counterintuitive thing and withdraw from the loved person. It's very, very difficult for a parent to withdraw from a child, for example. It seems emotionally right to give yourself over completely to your child, to do everything you can to cure this illness, to have no boundaries. Unfortunately, although their motives are good, parents who do this, especially mothers, often find themselves in trouble. Their whole life becomes the mental illness of another person; their relationships with other family members begin to suffer.

People have to learn to take care of themselves before they can take care of other people.

Having a mentally ill parent must be a terrifying experience.
As Jason, one of my subjects who is now in his 30s, said, it's having your parent "helpless and needing to be nurtured" at a time when the parent should be nurturing you. And the children of the mentally ill -- at least the ones I spoke with -- adapt to this and are able to normalize the most extraordinary things. They're like children who grow up in wartime, or in violent housing projects.

"I remember once this friend of mine came over," another subject, now a therapist, recalled. "We were sitting on the floor watching television, and my mother picked up a pair of scissors, and she was going, 'Click, click,' inches from my face. You know, that's what I went home to: a madhouse that started to feel normal."

The anger and sense of betrayal catches up with children later on, in adulthood. They don't feel at home or comfortable in the world -- it's a sort of gigantic post-traumatic stress disorder, where the trauma was their extraordinary childhood that wasn't a childhood. They really didn't have a childhood.

Many of the spouses you spoke with said they might leave the relationship altogether if things got too hard. Is that ever justified? Whatever happened to "in sickness and in health"?
I've often heard people say, "I can divorce my spouse, but I can't divorce my kids." So there's a notion that some relationships we can leave legitimately, but other relationships we leave not so legitimately. We have a kind of moral code that says you can never really leave a relationship with a child; you simply have to run through brick walls, if need be.

I wouldn't want to make a moral judgment about the rightness or wrongness of leaving a marriage. I find it astounding that my wife didn't leave me in the midst of my own depression -- I wasn't easy to live with.

What I explore are the conditions under which people do make that decision. It is often made when, first, the healthy spouse has done everything he or she possibly can to help the other person become well -- has tried to give love, to run interference with doctors, to monitor medications; has exhausted the whole repertoire of caregiving -- and nothing has made the situation any better. In fact, the situation might be worse. And second, and maybe more critical, at a certain point healthy spouses who choose to separate have come to feel not only unable to change the course of the illness, but also that their own identities are being buried, that they're losing themselves and jeopardizing their own health.

These are circumstances under which people feel they can legitimately leave relationships.

All the people you interviewed did hang in there. What enabled them to do so?
I don't really know for sure. But I think that the people who are most successful in this caregiving situation are those who have truly internalized the mantra of the caregivers group that I've been observing: "I didn't cause it. I can't cure it. I can't control it. All I can do is cope with it." They call it the four C's.

These are cognitive recognitions, but in some ways they're also spiritual recognitions. I see them in a sort of Buddhist light: Buddhists advocate that we stop trying to control everything in our lives, and that we accept suffering as an integral part of life.

Caregivers of the mentally ill often find themselves in a unique interpretive dilemma. They want to embrace the idea that mental illness is a biological phenomenon. But if a person has a biological disorder, is that person then assumed to have no control whatsoever over his or her personal behavior? Do mentally ill individuals have some responsibility to help themselves?

In the end, most caregivers give up trying to control the illness or the patient and instead focus on controlling the environment of care: becoming an effective advocate with hospitals and doctors, monitoring medications, managing the situation.

There's an intrinsic problem in dealing with mental illness, and that is the difficulty of interpreting troubling behavior. You can't know at a particular moment whether it's the biological disorder that is making the sibling or spouse or parent incredibly contrary, or whether the person is just being incredibly contrary. It's not at all clear even among psychiatrists when mental illness is operating. There's an enormous amount of confusion about what mental illness is. It may be that some behavior that we consider abnormal is a normal response to a pathological society.

Where normal behavior leaves off and pathology begins -- that is surely as much a political and cultural judgment as it is a medical judgment. I'm inclined to say that if we want to understand mental illness we ought to spend at least as much time looking at cultural chemistry as we do at brain chemistry.

Is that part of your approaching this subject as a sociologist rather than just as a caring person?
Yes. I think Americans are remarkably ambivalent about caring and caregiving. And what I argue as a sociologist is that we need to understand how the terms of our ambivalence arise from our culture. Americans hear simultaneously two rhetorics. One is that of radical individualism: Do your own thing; you only go around once. But then there's this other rhetoric that says, Do whatever you have to do to take care of family members -- the rhetoric of community, often with religious inflections: You are your brother's keeper, you should honor your parents, and you have a responsibility to help those in need.

I had a student while I was working on this project, a graduate student from Thailand, who said to me, "You know, the issues that you're raising here wouldn't even arise in a Thai family." What my student was saying was that the dilemmas that are at the heart of my book -- how close should I as a family caregiver get to a mentally ill person, what do I owe myself, where do I draw the line -- would not even arise in the consciousness of a Thai person caring for a parent. The Thais have no cultural vocabulary other than that you take care of your parents no matter what.

There is an ethic of expressive individualism in America. There always has been. It's part of what makes the culture unique and in some ways liberating. However, when that individualism is taken too far, it begins to erode the fabric of a society.

Look at what's on the shelf of a bookstore these days, the self-help books. There's a magazine called Self. Americans deify the self -- and that makes it more difficult for us to care for one another.

Which is really a critique of American society, isn't it?
We talk about individual responsibility in this country -- much of my book is about individual responsibility for our loved ones -- but we also need to talk more about collective responsibility for persons who are suffering. We talk about family values, but we have to talk about how the family can be supported and look for ways to relieve some of the burden of caring for sick people. The family is like any other system: When you ask it to do too much, it collapses.

Robert Cohen is a freelance writer who lives in Boston. His interview with philosopher Thomas Hibbs appeared in the Spring 2000 issue of BCM.


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