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.
