The contract changes when a husband or wife becomes chronically ill, but many couples learn to not just adjust but also thrive. Here are their stories.
Roanne Weisman remembers the surgeon telling her that the operation to replace her defective heart valve would be as simple “as getting your hair done,” but in the OR it didn’t turn out that way. A tiny piece of calcif ied heart tissue broke off and traveled to her brain, partially blocking the f low of blood and oxygen, and the doctors were unaware of what was happening until it was too late. Roanne awoke in the ICU to f ind the left side of her body paralyzed; she’d had a stroke on the operating table. Her physicians didn’t know if she’d ever recover. She was 43 years old.
Michael Weisman, Roanne’s husband of 17 years, was at her side when the surgeon came in and said, “Sorry you stroked, but heartwise you’re f ine now.” Then he walked out, leaving the Weismans alone to deal with the fact that Roanne, a medical researcher, writer and mother of two small children, had become disabled overnight.
Roanne, who suffers from a condition called Marfan syndrome (a genetic disorder of the connective tissue that often causes heart problems), left the hospital with nothing more than a prescription for physical therapy. Back home in Newton, Massachusetts, she could not shower or dress herself, although she could shuff le along with a four-pronged cane. She told her husband, “My life is ruined.” At first, Michael, a trial attorney, helped her to do what she couldn’t. But, she says, after several weeks he told her, “A lot of people can be your caregiver, but only one can be your husband, and that’s the relationship I want to focus on.”
Roanne was incensed at what she saw as his betrayal. “How could he not want to bathe me and cut my food and help me down the hallway?” she asks. “Didn’t he understand how much I needed him, how terrified I was? He was my husband—why wouldn’t he want to take care of me?” Instead, using their insurance, the couple hired a home health aide to help Roanne shower and dress and to serve her meals. Michael still pitched in; their then nine-year-old daughter, Elizabeth, helped her mother do her exercises.
Over time, Roanne, now 57, and her husband, also 57, were able to talk more about what Michael was feeling; he explained that his desire not to be her main caregiver came out of wanting to preserve their emotional partnership. And Roanne came to see that by having outside help she was able to preserve her dignity. “I could be more of a partner than a helpless dependent,” she says. “We were able to find who we were together in this new scenario without illness being the only topic between us.” After a year, Roanne recovered 80 percent of her function, though she still deals with Marfan syndrome. The couple just celebrated their thirtieth anniversary in Saint Lucia. “But what if we hadn’t had such great insurance?” Roanne asks. “What would have happened to our marriage then?”
I know firsthand how much stress an illness can bring to a marriage, even when two people have been deeply in love for decades. For the past 10 years I have suffered from a series of auto-immune diseases, including Guillain-Barré syndrome, and twice I’ve experienced extended bouts of paralysis. After the second attack, I spent five months learning to walk again—while trying my best to pretend I was “doing just fine” for the sake of my husband and two young children. As I slowly resumed my roles as wife, mother and writer, I finished a book, The Auto-immune Epidemic, investigating today’s rising incidence of such diseases. Now I am able to write and care for my family, but illness still takes a daily toll. My constellation of diagnoses often requires several physical therapy sessions and doctor visits a week, and there are days when my hands go numb or fatigue overwhelms me.
In addition to my personal experience, as an expert on chronic illness in America I’ve spoken to and heard from thousands of women who are reeling from the damage disease is doing to both their bodies and their marriages. “I see this trend every day in my work,” says Deborah Ross, 59, a psychotherapist whose husband battles epilepsy. “The baby boomer population is aging and a growing number of couples are struggling to integrate long-term medical challenges into their marriage. Clients come in saying that they’ve been unable to find the tools to handle what they’re facing—and their relationship is in crisis.” Many couples assume that the situation they’re experiencing is more the exception than the rule. Not so, says Ross: “The reality is that chronic illness happens frequently in marriage. There is no way to get around that—only through it.”
Increasingly, a diagnosis of chronic illness occurs in midlife. Women in their forties and fifties are particularly vulnerable to a range of disorders, including auto-immune diseases (rates of many have doubled and tripled in recent decades); back pain (which hits a third of women between 45 and 64); arthritis (affecting 26 percent of women between 40 and 60); and cancer (afflicting about 200,000 women between 40 and 59). In all, nearly 133 million Americans deal with a chronic health condition. “Illness requires so much extra time and labor—between medical appointments, insurance bills and health regimens, the need for rest, or just added time for the smallest things, like taking a shower or getting dressed,” Ross says. “Meanwhile, the healthy spouse often has to take on more of the to-do list for home and family life. People can get caught up in just doing and plowing through.”
Many marriages disintegrate under the pressure. In the general population, the lifetime divorce rate is roughly 50 percent; for chronically ill people, the rate is 75 percent, according to one often cited statistic. That number, extrapolated by some advocacy groups from the National Health Interview Survey data, is not universally accepted, but the dozens of experts I interviewed for this piece agree that an unusually high percentage of chronically ill patients are divorced, and that illness is often the precipitating factor. Among the dozens of women I spoke to were a few who added a heartbreaking twist: that although the relationship with their spouse had fallen apart, they stayed married for the health insurance. Too ill to work, they knew they couldn’t qualify for any other kind of coverage. “As if it weren’t enough to face the terrifying things happening to her body, a woman has to cope with her feelings of loss and fear about her future—and on top of all that she has to manage her spouse’s feelings,” says Susan McDaniel, PhD, professor of psychiatry and family medicine at the University of Rochester. “It’s too much to ask of one person.”
So what distinguishes the couples who do make it through? After hearing from many people across the country about their need for support—and their disappointment in discovering that so little help exists—I decided to find still-married couples and talk to them about how they make it work. While the specifics varied, I discovered that for the most part, the successful couples weren’t dealing with fewer or easier problems. But each of them was somehow able to use the challenges to strengthen their relation-ship rather than weaken it—often in ways that would benefit any marriage.
TALK—EVEN WHEN IT SEEMS HURTFUL
Only two months after Rosalind Joffe’s wedding 29 years ago, she found herself bedridden and blind in one eye. The diagnosis: multiple sclerosis. Just out of medical school, her husband was well aware of what the illness could mean for them as a couple. They went on to have two kids, but after Rosalind received several additional autoimmune diagnoses, they were both overwhelmed by the magnitude of her physical challenges.
Although her husband was helpful about arranging doctor appointments for Rosalind, now 58, and “making the important phone calls,” as she puts it, she felt their emotional connection growing thin. She wanted him to sympathize with her about her losses, like having to go to sleep early in the evening instead of reading bedtime stories to the kids. “But he couldn’t do that,” she says. She remembers a day early in their marriage when she was in bed with a lot of pain. There was an important social function that night that they had been scheduled to attend, but Rosalind didn’t think she could manage. “My husband told me, ‘Your mother might want you to live in a glass bubble so you’ll be safe, but I can’t live that way,’ ” she says. “I felt so alone when he said that. I went to the party that night, and it was horrible. We were able to keep going after that, but we really just plugged along, each in our own world.”
Because she felt such guilt that what she was going through was robbing her husband and children of a normal family life, Rosalind hesitated to talk about the physical pain she endured or about any of her needs. “It was overwhelming,” she says. “I had to find a way to voice what I was feeling and also probe my husband to talk about what he was feeling. At the same time, I knew I was the source of everyone’s difficulty.” As a result, Rosalind didn’t say much at all. As the years progressed, things got worse. “We got caught up in throwing accusations back and forth about who did more and who was more tired and who was in more pain,” she says. “I didn’t know why we were married.”
Every couple I spoke with talked about how illness infused the marriage with so much fear and loss that it became difficult—if not impossible—to communicate about these darker emotions. Finally, the Joffes sought the help of a therapist, who told them that they needed to have some very tough conversations about the feelings they were holding back. For the first time, Rosalind’s husband told her how painful it was that she was so sick all the time. “It was the hardest thing I’ve ever had to hear,” she says. “He told me that there have been so many losses for him; that he’s had to carry so much of the burden of family life and there have been so many moments for him that have been lonely and depressing and terrifying when they should have been joyful.”
The two developed a code to use whenever they weren’t connecting. They’d ask: “Are we on the same team here?” They had to learn to look for the good in each other even under the worst of circumstances. “His speaking honestly made me feel closer to him,” Rosalind says. “Once we saw that we had the same intention to keep the marriage going, we stopped playing against each other. We learned what our marriage is capable of, what depths we could go to together.”
ADJUST EXPECTATIONS
Mark McCart, 54, whose wife, Michelle Miske McCart, 54, has suffered from multiple sclerosis for the past decade, recently retired from a stressful career in banking. He used to imagine that this time of life would bring them a lot of travel and fun. But three years ago, Michelle lost vision in one eye and stopped being able to drive. Every day she has to go through 90 minutes of physical- and speech-therapy exercises before she can even get out of bed. “I never know from one day to the next what she’s going to be able to do,” Mark says. “We can come up with a plan, and 10 minutes later it gets thrown out the window because it is suddenly a bad MS day.” The world travel Mark had imagined is out of the question. “We have to do things that don’t involve driving long hours or sitting on a plane,” he says. “We have to make sure there are restaurants where she can eat with her limited diet, and that we stay in hotels with mattresses that are OK for her.”
Rosalind Joffe has seen similar sacrifices made in her own marriage. “Even when we were young, when everyone else our age was brimming with plans and was so excited about their future, we had fears about what lay ahead. What was the future going to hold for us, given my MS and inflammatory bowel disease?” she says. “But I always believed it would work out. I don’t know how or why, but I was always optimistic. And that optimism—or, some might say, denial—worked well for me during that very difficult time.” Over the years Rosalind, who has since gone on to coach chronically ill women about their careers and to blog at cicoach.com, has had to make sure that her husband made plans without her. “He took both of our daughters down the Colorado River for their bat mitzvahs, something I couldn’t join in,” she says. “I encouraged all of them to do that.”
And what about sex? Most of the couples I spoke with weren’t comfortable discussing it, and little wonder. Sex goes with wellness and energy; it comes out of feeling good about yourself and your body. It’s hard enough for two people to find such moments even in the best of circumstances. But when one partner has a chronic condition, those moments can be nonexistent. “When I’m in pain, I’m not the most pleasant person to be around,” says Michelle Miske McCart. “And I’m in pain a lot. That doesn’t inspire romance. And I’m sure that sometimes Mark is afraid of hurting me. He sees how fatigued I am, and he is afraid to even try.”
“It’s obviously harder than it would be otherwise,” her husband says. “You don’t really want sex to be work, and you want it to be at a time when you’re both in the mood and feeling good. It’s very tough to find that moment.” Michelle says that it is often she who initiates sex. “I still want it, and it makes my body feel good,” she says. “Just because I’m ill doesn’t mean I don’t still have those feelings.”
And it isn’t just sex that’s at issue. Romance itself is at stake. “When you add the demands of an illness to the responsibilities of child rearing and career, it tends to be that your spouse ends up with whatever bits are left over,” Roanne Weisman says. “The marriage gets taken for granted. There isn’t enough energy for illness, work and kids, much less a spouse who needs your attention. And that can be a very dangerous situation.” Roanne feels that because she and her husband are now in their fifties, they are even more protective of their marriage. “Who knows how long we’ll be as healthy as we are now,” she says. “At our age, even the healthier of two spouses may find that he or she, too, is suddenly facing a crisis. You have to soak up this time together while it’s right here in front of you, before it’s gone.”
STOP TRYING TO BE PRACTICAL
Barbara Kivowitz, 56, who blogs about couples and chronic illness at insicknessinhealth.blogspot.com, says that she felt “kicked out of life” 10 years ago when she developed a neuropathic pain disorder that, in her words, left her “curled into a fetal position and dripping with pain and anxiety for the better part of a year.” Her husband, Richard Weissberg, 59, took over the household tasks and dealt with the insurance. “He was always there for me,” she says. “If I needed him to be quiet, he would be quiet; if I needed him to sit with me, he would.” Still, even in this best-case scenario, there were relationship issues. While Barbara is intuitive, her husband is analytical. This meant that when tough decisions had to be made about her treatment, Richard, the engineer, would take a cool-eyed problem-solving approach. “At times I felt stranded on my island of misery while he ran through all the statistics and probabilities of this treatment and that,” she says.
Deborah Ross says that after years of helping couples who face chronic illness, she has seen this happen over and over. At times like these, when men feel inadequate, “they tend not to talk about their feelings,” she explains. Instead, they try to fix the situation with practical steps: filling out the insurance papers, putting a handrail in the shower or going to work and making money. Ross recalls one male client who told her that he tried to be there for his wife but that she complained he’d abandoned her emotionally. He then explained to Ross that, as the breadwinner, he defined “being there” as focusing on his work and keeping their health insurance. He asked Ross, “How much of a physical and emotional presence can I be for her and yet still keep a roof over our heads and make sure she has the insurance she needs—both of which require my keeping my job? Why can’t those acts be seen as just as loving as holding her hand?”
But “doing for” and “being there” are not interchangeable, Barbara says. “Pain is a harsh driver. I no longer had any bandwidth for conversations or efforts at support that weren’t helpful to me. What I really needed was simple comfort.” As doctors struggled to figure out why her neurological system was sending pain signals to the muscles throughout her abdomen, she became very pessimistic that she would ever feel better. She told Richard, “Sometimes I need you not to problem-solve for me, just comfort and reassure me. Hold the hope for me that it’s going to be all right.” There were times, she says, when “I had to give him the script and tell him exactly what I needed to hear.” After a while, Richard learned to ask, “Do you need problem-solving now, or do you need me to hold the hope?” And Barbara could tell him whether she needed him to make three phone calls—or just hold her head in his lap.
RESET PRIORITIES
When a woman in midlife falls ill, it’s often a chance for her husband “to go higher on the sensitivity scale,” as Barbara puts it, and for many husbands, it’s their first real foray into the trenches of caregiving. When it’s the husband who faces a life-altering illness, however, a woman faces different challenges. Many wives have long been the caregiver and organizer and chief bottle washer for the family—husband as well as children. By mid-life, these women are often salivating for their own space and time, and for them, a husband’s sudden illness promises to become another never-ending series of tasks.
Deborah Ross’s husband, Chuck, 59, had been sick for some time, experiencing partial seizures, migraines and sudden loss of word recall. Then, on an airplane, he had a generalized seizure so severe that the pilot turned the plane around and returned to the nearest airport. Soon after, Chuck was diagnosed with epilepsy.
Deborah did everything she could to make his life easier; she was terrified about what might happen to him. But his diagnosis also brought on, for her, “a whole gamut of very difficult emotions,” she says. “I was relieved that his seizures were not something more serious, like a brain tumor, and that these strange symptoms that had been growing more severe now had a name: epilepsy.”
Still, mixed in with the fear, relief and love for her husband were worries about what it all meant for her. Deborah had just turned 50, raised three kids into their teen years and finished a degree in psychology. She’d opened her own practice, and it was taking off. “I was just getting out from under having to look after everybody, and suddenly I was right back where I started—spending every day as a caregiver,” she says. “Here I’d been telling myself it was my time, time to be my own person. I was looking forward to my family being less dependent on me. And then Chuck became so ill, and my days became about driving him where he needed to be and worrying over what we needed to plan around next.” She wanted to care for him, she says, but there was also a part of her that resented the situation. “I wasn’t going to get my turn to fly,” she says. “It was as if an air traffic controller had just said, ‘Grounded!’ I’d lost my place in the queue to take off, and I wondered, will my turn come again, or will this airport be closed?”
Meanwhile, Chuck was torn up by his own emotions. “I felt so guilty that I couldn’t drive and what this meant for my family,” he says. “I was well aware that Deb had put her career on hold to raise our kids and that she had been all set to devote herself to her practice. And then this hit. I felt terrible about what this would do to her dreams. But I was also dealing with the devastation of not knowing how things would turn out, what it meant for me, for my life, for my future.”
Deborah says they had to have some of the toughest conversations they’ve ever had in their marriage. With the help of therapy, they learned, she says, “to be respectful of each other’s experience of this illness in our lives—even when our views are radically different.” They began to frame difficult moments with an invitation: “There’s something I want to share with you, are you available?” With this shift, Chuck Ross was able to explain how his illness had changed his view of himself. He recalls one conversation vividly: “I told Deborah, ‘I can’t deal with the fact that I have to do this for life, that I’m now dependent on a medication to make me OK. My whole life I’ve never been dependent on anything. But if I don’t take these pills, I’ll bring devastation on me, on you, on our whole family.’ ”
Even so, he says, “Deb never made me feel guilty about how I felt; it was always about what was best for me.” His voice breaks as he continues. “What we’ve been through has shown me the depth of her love for me—I can’t help but cry. She took care of me and our family, and although she didn’t always do it cheerfully, she did it lovingly. She was always willing to give more than the minimum amount required.”
SEARCH FOR HELP
After spending four exhausting days hovering by his wife’s hospital bed after her stroke, Michael Weisman ducked into a hallway to privately wipe his tears. A doctor walked by and, as Michael remembers it, said, “Oh no, you can’t cry! You have to be strong for your wife!” No one stepped forward to acknowledge the terror and despair that the Weismans felt, much less to offer a blueprint on how to cope with this terrible moment in both of their lives.
Kimberly Koch, associate vice president of family and support programs at the National Multiple Sclerosis Society, says that several years ago she began to hear the same report from many of their local chapters: Patients were complaining that couples’ issues were not being addressed by doctors. Women wanted reassurance that they weren’t alone, they wanted to learn coping skills, and they didn’t know where to turn. So Koch and her team investigated the existing resources and were shocked by what they found. “We discovered that there was a growing need for this kind of help, but neither the medical establishment nor organizations like ours were meeting it. Nor were they really understanding the scope of the problem these couples faced,” she says.
Susan McDaniel, the University of Rochester professor, agrees: “The medical community often neglects to help couples metabolize the toll that chronic illness takes on a marriage, even though we know that how well a husband and wife cope together has a direct impact on how well a patient will heal. Most women are critically under-served when it comes to dealing with the stress illness puts on their relation-ships, and they are suffering.”
One reason for this is simple: Medical schools don’t teach doctors how to identify marital stress, much less how to treat it. And while sending people to couples’ therapy may seem outside a doctor’s job description, failing to do so comes at a medical cost: Studies show the likelihood of a woman having a best-case outcome with her disease depends, in part, on the health of her marriage. One recent report in the journal Cancer followed married or cohabiting women who had been newly diagnosed with breast cancer for five years to see how the quality of their marriages affected their health. Women in distressed relationships recovered more slowly, and they also experienced more symptoms of illness and more side effects from treatment.
Although few hospitals are directly addressing patients’ marital needs, there are signs that the practice may soon become more widespread. One of the objectives for the Obama administration’s proposed overhaul of the U.S. health care system is to make the patient and family the center of a “health care home,” meaning that a chronically ill patient would be able to call on a team of health care professionals, including mental health specialists. This is already beginning to happen in Vermont. “Each patient in the Vermont system [approximately 40,000 people] has access to a health care coordinator—most often a nurse practitioner—who helps the family and patient design a care plan that meets their needs,” says Pat Ford-Roegner, CEO of the American Academy of Nursing. “For a couple facing chronic illness, the team’s services would include working with the provider and the couple to get them the counseling and in-home support they need. We hope to see this type of whole patient approach in every state in the next 10 years.”
In the meantime, the gap in care is being plugged piecemeal by therapists, bloggers and illness advocacy groups. In 2006, for example, Kimberly Koch applied for a federal grant that would allow the National MS Society to develop a program to help couples. Today, 2,000 people have been through the course, Relationship Matters, and it has become the model that other chronic illness organizations will be adopting in fall 2009. Bloggers are adding to the conversation as well. “The number-one thing people say about our Web site is how thankful they are that there is a place to talk about couples and illness,” Barbara Kivowitz says. “Not only is this topic unaddressed in society at large, it’s rarely even touched on in the privacy of the doctor’s office.”
REDISCOVER YOUR FRIENDSHIP
Every successful couple I talked with came back to the fact that they are best friends and partners. Couples who last are constantly trying to stay connected by communicating with each other even when it’s painful. “Illness creates imbalance. It changes the relationship contract, which was supposed to be between equals,” Kivowitz says. “Couples have to tell each other what they want and don’t want, when they want to be alone and when they need contact, when they are frustrated, happy, afraid.” The original contract may be broken, but a new contract can be negotiated, one conversation at a time.
The McCarts, who attended the MS Society’s Relationship Matters course, have learned that the most important thing they can do to promote their friendship is to “celebrate more,” Michelle says. “Do more of what we love together.” For instance, “Mark wanted to see an exhibit at the Art Institute of Chicago, so I got tickets and we went. This helps us to shift our focus away from all the work of getting to doctor’s appointments on top of our day-to-day tasks. Otherwise we just get mired in the chores of life.” The McCarts have also started to play board games together. “There’s one called Flinch that I used to love as a child,” Michelle says. “It’s very simple, but it requires a lot of strategizing. When we’re playing, I have to concentrate and my body relaxes. We’re not talking about my body or finances or chores; we’re just playing a game together. We laugh so hard. We’re buddies, and it makes dealing with the drama of my illness so much easier.”
Rosalind Joffe agrees that one of the biggest mistakes couples make is to let illness become the only thing they share, when they often have so much else that’s positive in their lives. For Barbara Kivowitz, much of the growth in her relationship came from realizing they had to build their marriage around more than “just doing.” So she and her husband decided to find ways to be together, even when she was in pain. “Richard started reading to me aloud as I fell asleep,” she says. “We also signed up for HBO and made sure to watch The Sopranos together on Friday nights.” Likewise, she says, “it was very important that I tell him that although much of the time he saw me crying or pacing or curled up in pain, I did have some good moments during the day. I had to bring forth some kind of joy from within myself to help Richard break through his darkness. So while I needed him to hold a little hope for me, I also needed to give him reasons to hope.”
This is the conclusion of a two-part series detailing the effects of chronic illness on the personal and professional lives of over-40 women. Part one, “Ill in a Day’s Work,” appeared in February 2009.