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.
