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When Illness Moves In

Helping Couples Process the Trauma of Sickness

By: Jeri Hepworth

The phrase "in sickness and in health" is a hallowed part of our marriage vows for good reason. As human beings vulnerable to a wide variety of diseases and infirmities, we need to know at the deepest level that our partners or spouses will stick around even when our bodies betray us, as they will eventually. And yet, even though we generally agree that abandoning an ailing partner is unacceptable, we don't really appreciate how high a toll a serious medical problem can take on a relationship. Even many couples therapists, I suspect—trained as they are to probe faulty communication patterns, sexual problems, money issues, work and family stresses—may not think of exploring a couple's medical history. But a partner's chronic illness, disability, or life-threatening medical emergency can disrupt and undermine an otherwise good relationship just as much as infidelity, addiction, or abuse. Indeed, severe medical problems can have a genuinely traumatic impact on even the strongest relationship.

Ellen and Phil looked like many other couples whose marriages aren't working—the signs were clear even in the waiting room. He was working on his PDA, and she was leafing through an old magazine with her back to him. They both had placed their coats on the seat between them. When I spoke their names, she jumped up expectantly and he finished his task before making eye contact. In the office, when I asked why they were there, Ellen said, "Phil, you talk. I'm tired of doing it all." So began what appeared to be a standard couples session in which each described disappointment and ascribed blame.

As the session proceeded, I heard the dissonances of marital problems 101: Phil was frustrated because he felt she didn't appreciate how hard he was working and how much stress he was absorbing to achieve his financial success. Ellen felt that Phil essentially dismissed her work as a school nurse and took for granted her responsibilities as manager of the home and family. They both then denied the other's accusation, insisting in turn that they did appreciate their partner. I pointed out that openly expressing appreciation can be neglected in the busy, time-pressured hubbub of a family with active children in junior high school. It was clear, as they talked, that they didn't spend much time together as a couple. Indeed, like a surprising number of couples these days, they reluctantly admitted that they'd "just ended up in separate bedrooms."

Phil smiled a bit and said that he knew I'd want to know about that arrangement. I asked whether they wanted to talk about it, and they showed a bit more comfort with each other as they quickly explained the situation. It happened for "practical reasons," they both agreed, and didn't reflect their mutual commitment or any loss of sexual interest in each other—though the arrangement did make sexual intimacy trickier to manage.

What were the "practical reasons" I asked? It turned out they'd begun sleeping in separate rooms about seven years earlier, after Phil was suddenly diagnosed with a nonmalignant brain tumor. Following the diagnosis came surgery, infection, and complications for several months, during which he was either in the hospital, in a convalescent center, or at home with nursing care requiring sterile surroundings. Practicality required that he have a separate room during his recovery.

But Phil received a clean bill of health more than five years ago, and still they hadn't moved back into the same bedroom. Somehow, this temporary arrangement had evolved into a permanent arrangement, with no discussion or formal decision. "Why?" I asked casually.

Ellen said they were both light sleepers, and it was just more comfortable this way. Phil nodded agreement. With that small matter out of the way, they were eager to return to explaining all the ways each felt misunderstood and underappreciated. But as a couples therapist who is also a medical family therapist, I told them I thought it might be useful to spend a little time talking about how Phil's illness has affected their relationship.

Stories of couples like Ellen and Phil who've experienced a significant health crisis are common in my practice. And couples who've gone through a serious medical event affecting one of the partners don't necessarily regard this as the kind of significant stressor on their relationship that could be addressed in therapy. But my experience has taught me otherwise: it's just as important to ask couples about their medical histories as about their differences concerning childrearing or views of money.

When a couple has gone through a medical trauma, both partners need to describe their unique perspectives about the illness and the meanings they ascribe to it. As with most couples issues, each sees their medical journey differently.

In talking about the illness from Phil's perspective, it was clear that he'd wanted to be as much in control of his medical situation as circumstances allowed. He readily ticked off the events of his illness, including specific dates when he first knew his symptoms were serious, as well as when he visited his family physician, the neurologist, and the surgeon. He could chronicle the details of his initial surgery and the second postinfection surgery like a medical student, and had an excellent grasp of his diagnosis, treatment, and prognosis. He described having good relationships with his physicians, and felt that he'd been well informed throughout, almost a member of the medical team.

In contrast to her husband's memories of personal agency, active involvement, and a realistically positive attitude at the time of his illness, Ellen mostly remembered her heart-clutching fear. She shuddered as she recalled the day she first learned Phil was scheduled to see a neurosurgeon, and how nervous she'd been as they waited in the doctor's reception room. She talked about the hours she'd spent each evening on the phone, updating family members and friends about Phil's condition. She tried to maintain a positive attitude, but described how, as a nurse, she'd had to fight off her nursing-school memories of people with shaved heads, loss of cognitive functioning, and terrible prognoses. She lived in constant anxiety that this might be Phil later on.

Phil listened to Ellen, took her hand, and tried to reassure her that he wasn't one of the unfortunate people. Although he agreed that there were some frightening complications, he reminded her of the success of the surgery, and that he no longer required yearly CAT scans. She looked only slightly reassured by this.

Phil and Ellen's conversations provided more than content about their experiences with the illness. The differences in their affect and the ways in which they responded to each other were informative. Through these relatively brief interactions, it appeared that Phil had a sense of competence and closure about the illness—he knew what had occurred, understood the seriousness of his illness at the time, but felt it had been well taken care of and the situation basically resolved. By contrast, Ellen, even years later, still showed physical signs of fear and agitation when she described that awful time.

As they talked about the illness, I noticed that the tone of their discussion was much different from what it'd been when they first arrived in my office. As Ellen described her distress, Phil responded with obviously heartfelt attempts to comfort and reassure her. There was a kindness and gentleness between them that hadn't been apparent when they were focusing on their grievances.

As therapists, we jump at opportunities to reinforce any glimpses of tenderness in our feuding couples. Even the most estranged couples can be brought to recognize and appreciate the support they've given and received from each other during times of family loss or illness. In fact, partners who are highly critical of each other frequently make exceptions when asked what it was like between them when a parent was seriously ill, or when a close cousin died. In times of grief and crisis, people can bury the hatchet with amazing speed, step up for each other, and be grateful for each other's support. Simply discussing these periods of illness with a couple can result in the same kind of positive feelings that emerge during recollections of their first meeting or the day they got engaged.

It hadn't occurred to Phil and Ellen that their trauma several years ago could have much to do with their present troubles, so I used a metaphor that I use often: a serious illness like Phil's tumor and surgery resembles a large tree falling on the house. It suddenly comes crashing down as if from nowhere, does a lot of damage, and leaves lots of debris requiring repair and cleaning up. It can be very dangerous, even fatal. Though it may be tempting to try to assign blame for the falling tree or obsess about ways it could have been avoided, most agree that this is just an unfortunate, random event, which nobody can predict or prevent. Afterward, however, we continue to relive the event, and may even become much warier when walking near trees. The point of this trivial example is to help people realize that illness is a real, often deeply frightening, event, with an impact that can long outlast its actual duration—years after the tree has been sawn up and carted away and the roof repaired, we may still remember that first terrifying crash and can't help but wonder when the next mighty oak may fall our way.

Phil agreed that this residual fear was probably true for many, but he felt assured that his tumor was gone and that there was no reason to expect a recurrence. Ellen felt no such security. She envied Phil's certainty, and though she believed that he was clear of danger, she still found herself worrying when he was late from work or unavailable on his cell phone. After more discussion, she began to sob. She said Phil didn't understand how hard it'd been for her and the children, since he'd been unconscious much of the time. It became clear that Phil and Ellen had never talked directly about what she'd gone through during his illness or afterward.

The physically well member of a couple is often a hidden patient who doesn't receive care during the crisis. Health care clinicians are taught to ask about the caretaking family members and encourage their self-care, reminding them that caretaking is frequently "a marathon, not a sprint." But people may require as much or more help after the crisis than during it. At the time of the medical trauma, people often find untapped reservoirs of energy and strength, which help them become superpeople temporarily, able to care for their loved one and maintain something of a normal life simultaneously.

For some, however, significant distress occurs only when the emergency is over. For one thing, during the "healing time" in the postcrisis months and years, people generally don't want to revisit the stress they've endured. Instead, they want to put it all behind them and take up their "normal" lives again. So a great deal of psychic distress—anxiety, money worries, fear of death and permanent disability—simply get ignored. But just because there's no discussion of the ordeal doesn't mean that it ceases to have emotional significance.

Many therapists might note that Phil, too, didn't have opportunities to acknowledge his fears, and might push this more. I did mention how frightening the episode must have been for him, and perhaps still might be. He agreed, but said that he thought the best response he could make to moments of fear was to trust his physicians' judgments that he probably wouldn't have a recurrence, since there wasn't anything he could do to prevent one.

Phil's clarification of his belief was reassuring for Ellen. She noted that it appeared to acknowledge his frailty, which she'd feared earlier that he hadn't recognized. They later seemed to find it helpful when I explained how ambivalence about an illness is often expressed by a couple. For instance, one will take the role of the worrier while the other voices certainty of good health. It's a way of "sharing" their ambivalence, but it can lead to polarization when each adheres to one position on the continuum between severe worry and complete confidence. Phil's statement that he doesn't dwell on fear allowed Ellen to see that although he didn't discuss it, he also experienced some uncertainty. It was freeing for her to realize that she didn't have to hold all of the uncertainty for the two of them.

As we discussed their coping styles, Ellen and Phil both noted that, by common consent, Ellen's fears hadn't been a topic of conversation between them. When couples recognize their roles in maintaining patterns like this, they can feel that they responded inappropriately. It's helpful to underscore that polarized responses are normal and may even be adaptive at times. Phil's focus on health, the future, and being cured may have been his best option, and even may have been helpful for Ellen then. I reassured them that their earlier responses had worked years before, but circumstances had changed, and they were no longer facing an illness crisis. Now that they felt safe from the threat, it might be a good time to consider these long unacknowledged feelings.

Illness is a traumatic and isolating experience, and couples have few guideposts with which to chart their reactions. Therapists can normalize a couple's responses, reinforcing what couples already know: in a crisis, no pattern of coping is necessarily any more "correct" than any other.

As Ellen and Phil grew more comfortable with the notion that it was fine that they had different responses to Phil's illness, they took more risks with each other to open the discussion further. We explored the common patterns that evolve when one partner becomes the other's caretaker. Although Ellen's occupation as a nurse may have influenced her assumption of a caretaker role in this case, it's natural for a caretaker–patient relationship to emerge, which frequently upsets the balance of a partnership. In extreme form, passivity or dependency can occur, creating resentment in both partners. This wasn't true for Ellen and Phil, and we discussed how they generally maintained an equal partnership throughout this time.

As we talked about potential changes they could now make, they both agreed that the sense of caretaker and patient had disrupted their sexual relationship. Even when Phil felt physically healthier and they wanted to resume their sexual activities, there was some reticence, which is common when sexual patterns are disrupted. Partners may fear causing the other pain after surgery or disability, or, as in Phil's case, be nervous about exerting pressure on his wife, who was already exhausted by her duties as nurse, homemaker, mother, and working woman.

But these concerns don't get at the deeper reason for sexual pattern disruption, which is actually the unacknowledged change in a relationship from romantic partners to caretaker and patient.

Ellen and Phil were relieved to consider that their sexual avoidance wasn't a statement about their poor marital functioning, but an unwelcome intruder that often visits couples experiencing illness. It helped them stop blaming themselves and each other, and provided hope that they could return to a "normal marriage."

Therapy discussions with this couple haven't been solely about illness, but about the mutual disappointments with their day-to-day relationship that had brought them into therapy. Now they recognized that their basic bond of trust and intimacy had been broken not by neglect, loss of love, lack of commitment, or personal failure, but by the illness that had shaken their core sense of well-being. Experiencing a life-threatening illness or event is frequently an existential crisis, which can alter a person and a couple's basic sense of security.

Developmental theorists, particularly Erik Erikson, inform us that intimacy is best established when a basic trust and sense of identity are present. When these are affected by a crisis like illness, it may require intentional work by the couple to rekindle intimacy and trust. Therapists can be crucial and creative allies in the process.

In therapy, Ellen and Phil have come to understand that the crisis had shaped their relationship much more than they'd been aware of. This meant that, rather than blaming each other, they could come together in recognition of the common sadness and pain they'd both endured. They could externalize the cause of their problems as the illness, which had literally been an intruder in their lives, making it immeasurably more difficult to withstand the normal disappointments and frustrations of daily existence.

Couples like Phil and Ellen, who've experienced a severe health crisis together, may come into therapy with the usual recriminations and complaints about each other, but no realization of how big a role the medical issue really plays in their problems. A therapist who misses this reality will not only fail to help a couple see the impact of the medical trauma on their relationship, but will also be unable to show the couple how this same experience demonstrated the strength of their commitment and love. The experience of illness is bad news and stresses any marriage or relationship. But illness can provide a vivid demonstration of how loyal, caring, and committed a couple can be when the chips are really down. The brain tumor knocked Philip and Ellen off their track, but showed them that they had the resources to get back on track.

Ellen and Phil haven't spent much time in therapy yet and don't feel ready to stop coming. But now when I see them in my waiting room, they're sitting closer together and smiling. And, they report, they've been spending more time sleeping in each other's bed.

Jeri Hepworth, Ph.D., is professor and associate chair of the Department of Family Medicine of the University of Connecticut in Hartford. She's the coauthor of Family-Oriented Primary Care and Medical Family Therapy and coeditor of The Shared Experience of Illness. Contact: jhepworth@stfranciscare.org. Letters to the Editor about this article may be e-mailed to letters@psychnetworker.org.