After the first days and weeks of crisis and early recovery have passed, you settle into a new life together, just you, your partner, and the illness. Nothing’s the same — but should you talk about it? Experts say yes. Both of you may be feeling angry, fearful, or guilty. You may worry about finances, the kids, your sex life, or your partner’s future. You may be in denial, insisting that everything’s really just fine, or grieving over all you’ve lost. Communicating about your inner experiences is key now and can set the tone for your relationship for years to come. These steps can help.
Accept your new reality. It may be painful, but accepting the fact that your partner has a long-term illness and may have limitations keeps you both from being frozen in denial. This can be especially difficult if an illness is invisible or progresses slowly. But shrugging off symptoms — or downplaying the need for treatments, doctor’s visits, or lifestyle changes that keep damage at bay — can actually make the condition worse down the road. It also spells trouble for your marriage because it sends the message that one spouse’s well-being isn’t truly important. Recognizing reality is the first step in being a resilient, resourceful couple.
Get an education. When researchers at two Midwestern cancer centers asked 22 prostate-cancer survivors and 20 wives what troubled them and what would help most in living with prostate cancer, they reported that most couples had “an overwhelming need for information.” Shock and fear often kept them from asking questions during doctor’s appointments; conflicting medical opinions and confusing treatment options left them struggling to make the right decisions. Many said they were unprepared for the ways cancer treatment would affect their day-to-day lives. “Although they had been told about incontinence and impotence, health-care providers rarely spent time discussing the impact of these effects on daily lives,” the researchers reported.
Learning all you can about your illness — or your spouse’s — can calm your fears, open doors to new treatment options, clear up confusion, help you manage symptoms, and solve day-to-day dilemmas. You gain a much-needed sense of control. Working with cold, hard facts will also help the two of you make decisions as a team.
In fact, when Vanderbilt University School of Nursing researchers studied couples in which the wives had rheumatoid arthritis, those coping best with this painful, progressive condition knew all they could about the illness, treatments, exercises, even massages.
Best bets for trustworthy medical information? Good online sources include the National Institutes of Health, the National Library of Medicine, associations dedicated to the specific illness you or your spouse has, online support groups, and organizations for doctors who specialize in that condition. Your doctor can provide educational materials, and your local library — or the library at a local college or university — probably has a wealth of information as well.
Assemble a support team for the well spouse — pronto. In the days and weeks after a health crisis, a well spouse is at higher risk for depression and anxiety than the ill spouse, found a recent University of Kentucky in Lexington study of 417 heart patients and their spouses. Researchers found that well spouses had less support than their mates. And their emotional stress seemed to “rub off” on their partners, hurting their marriages, their relationships with friends and family, their feelings about the quality of their medical care. It even delayed their return to work.
Talking with friends and relatives can help. So can being included in medical decisions in the hospital and afterward, the researchers suggest. That way, you won’t feel helpless or that you have no control over what’s happening to your partner.
Talk, talk, and talk some more. “A couple needs to talk frequently about what both spouses need and how things are going,” Dr. Sotile says. “What’s working? What’s not? What do you need more of or less of from me?” Don’t hold back because you think your ill spouse shouldn’t be burdened by your needs or because you think your well spouse is already doing all he or she can. It’s important to be supportive and honest with each other.