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.”
