How to Survive a Health Crisis or Chronic Illness

Reevaluation
First comes the shock: emergency treatment for a heart attack or stroke, for example. Or the diagnosis and treatment of cancer. Or test results that reveal the presence of a chronic medical condition that will be with you — and your marriage — for the rest of your life, such as diabetes, arthritis, failing kidneys, or chronic pain.

Next comes the long haul. When a health condition travels home with you from the hospital or the doctor’s office, it takes up residence in your kitchen and bedroom, on your calendar and in your daily lives, in your hearts and in your minds. “Coping with this illness will be part of your marriage from now on,” notes Wayne M. Sotile, Ph.D., director of psychological services for the Wake Forest University Healthy Exercise and Lifestyles Program. “There’s nothing more important for living well with any chronic disease than a happy, loving marriage.”

A medical crisis or lifelong health condition rewrites the script of your relationship. Your roles may change drastically. Your future doesn’t look the way you’d hoped. Sex, money, work, chores, fun — they’re all different now. “Managing the way an illness affects your marriage is just as important as keeping up with medications and doctor’s appointments and treatments,” Dr. Sotile says. “Today, most illnesses aren’t short events. They’re processes that go on and on and on, possibly for the rest of your lives. And both of you will need different things at different times in the process. Couples who take responsibility for this can build stronger, closer marriages despite the presence of illness.”

A close marriage not only makes life easier for the two of you, it could be a make-or-break factor in the health of both the patient and the caregiver. The stress and demands of caregiving heighten the odds of the caregiver spouse developing his or her own serious health problems, as well as depression and anxiety. And marriage problems can affect you both as you cope with illness: When Israeli scientists studied 73 couples in which the wives had breast cancer, they found that when husbands were emotionally distant, their wives suffered more distress.

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.

Important conversations the two of you should have early — and often — include:

• How the ill spouse can support the caregiving spouse.
• What the ill spouse can do to take care of himself or herself.
• What can the well spouse do to make life easier?
• What are your feelings and thoughts about the illness and how it’s affecting your life, our marriage, and the future?
• Do we need more outside help and support?
• Are our coping styles in conflict? Is one of us a staunch optimist, the other a realist?
• Are we finding time to enjoy each other and life, despite the illness?

Listen — even when it’s a tough job. Dealing with medical limitations can leave you feeling depressed, angry, fearful, and guilty — whether you’re the “sick” or the “well” spouse. And sometimes a civilized talk won’t let you or your partner really vent. Allow yourselves to express your true feelings about the illness, without blaming or criticizing each other.

Don’t be the health police. The health cops are always on patrol, checking to see if the sick spouse is taking her meds, eating all of his high-fiber cereal, following through with medical treatments, and looking over test results. Trouble is, studies show that when the well spouse joins this police force, the ill spouse is more likely to resist following doctor’s orders. “Don’t nag, blame, shame, monitor, fuss at, or criticize,” Dr. Sotile says. “Research shows these are ineffective ways to help your spouse — they just don’t work.” What does work: support, encouragement, expressing concern, compassion. “It’s enough to tell your spouse that you hope they’ll develop a specific new health habit because you love and care about them,” he says. “Leave it at that. Pushing the issue could easily backfire and hurt your relationship at the same time.”

Throw negativity out; invite happiness and fun in. Often one spouse in a patient-caregiver relationship feels angry or isolated, anxious or depressed or pessimistic. “It’s tough for the other spouse not to fall into the same way of thinking,” Dr. Sotile says. “It’s vital that the other partner continue to express love, concern, and care while refusing to participate in this form of misery. Joining in can lead both of you into anger, conflict, and worry. If you both burn out on negativity, it’s not going to help either of you.”

The antidote? Declare periods of time when you don’t talk about the illness — it could be for an hour, a day, or a weekend. Do whatever you can still enjoy together. “If you used to go country dancing, and now one of you can’t dance, think about everything you enjoyed about that experience and try to re-create as much of it as you can,” Dr. Sotile says. “Don’t throw it all away. You enjoyed the music, seeing friends, dressing up, getting out of the house, laughing. There are other ways you can still have those parts of the experience.”

Likewise, spend time appreciating small pleasures together: the sun on spring leaves, a CD by your favorite musician, a new movie.

Don’t do it all — or sideline the sick spouse.“You both need to feel necessary,” Dr. Sotile says. “We all need to feel needed, including someone who has a health condition. Letting the patient be a source of strength and encouragement helps everyone.”

Physical affection is a powerful stress-reduction tool for married couples — and the better your relationship, the stronger the power of touch. In an intriguing University of Virginia study, 16 married women agreed to be zapped with very mild electric shocks while researchers studied their brain activity with magnetic resonance imaging (MRI). Each woman in turn held her husband’s hand, the hand of a male stranger, or no one’s hand.

The results? Chalk up a victory for marriage. When husbands reached into the MRI machine to clasp their wives’ hands, activity in the part of the brain that registers the anticipation of pain quieted down significantly for the women. They said that they felt less distress. And brain images also showed less agitation in the hypothalamus, the area of the brain that controls the release of stress hormones. Women who were most satisfied with their marriages got the most benefits. In contrast, holding a stranger’s hand cut stress only a little.

“We can’t see what our spouses are doing to our brains and emotions until a stressful event arises, but it’s going on all the time,” noted lead researcher James Coan, Ph.D., soon after the study was published. “When a wife holds or caresses her husband, she is really reaching into the deepest parts of his brain, calming down the neural-threat response.”

Touch is second nature in a close marriage. But when one spouse is sick, that can all change. Experts suggest that couples make it a point to stay physically close and even resume their sexual relationship. But pain, muscle weakness, surgical scars, breathing problems, medication side effects, and worries about stamina or the effects of a physical activity like sex could make you both feel wary. The ill spouse may not feel attractive. The caretaking spouse may not want to overtax his or her mate. Your instinct may be to wait, but how long? This advice can help you both get the affection and love you need — safely.

Shower each other with physical affection. Hold hands. Hug. Kiss. Touch whenever possible. Learn how to perform a simple foot, hand, or back massage — and trade massages. The more touch, the better. It’s soothing, cuts stress, and makes you feel closer and happier. If you have surgical scars or feel self-conscious about your changing body due to weight gain or loss, spend time holding each other while you are dressed. Dr. Sotile suggests gradually letting your partner see surgical scars or changed parts of your body, then gently rubbing them with lotion or touching them.

Have fun. Your mate is still your partner, so don’t forget physical flirting and fun even if it doesn’t lead to intercourse or an orgasm. Tease each other. Tickle. Fool around. Get to second base and linger there.

Make love when you’re both ready. Physical love triggers the release of the bonding hormone, oxytocin, in women — you feel calm and happy. It also lowers blood pressure, protecting against heart attack and stroke. Men also experience a fivefold increase in oxytocin just before orgasm. The health benefits of regular sex for men? In a study of 1,000 guys from Northern Ireland, those who had sex three times a week or more cut their risk for a heart attack or stroke by 50 percent. Frequent orgasms lowered risk of death to one-half that of sexually inactive men, say researchers from Queen’s University in Belfast. Maybe that’s why long-married men live up to five years longer than their unmarried counterparts.

And yet, you may be worried about sex — and that’s normal when illness visits your marriage. Eighty percent of heart patients, for example, are scared to make love for at least six months after a heart attack. Sex may not be the same — and it’s wise to talk with your doctor first for advice on whether you’re in the small minority of heart patients for whom sex may be risky, if your medical condition causes pain, or if you take medications that have dampened your libido or sexual response. Take it slowly. Enjoy the full experience of touching, tasting, feeling.

Need a little help? Ask your doctor. Steer clear of health food-store and online remedies for low sex drive or orgasm troubles. Some may be dangerous; others are simply ineffective. Still others could interact with medications you take and produce unwanted side effects. Both men and women experiencing arousal or orgasm difficulties after a brush with a major illness may boost sexual pleasure with a little pharmaceutical help, Dr. Sotile says. Viagra-type pills and creams that enhance blood flow in your most erogenous zones may be worth exploring.

Your doctor may also be able to adjust other medications you’re taking or suggest other strategies to improve your sex life. If talking about your sex life with your doc makes you uncomfortable, pave the way by writing down your questions in advance.

Redefine intimacy. Don’t give up if sex isn’t what it used to be or is simply not an option right now. Embracing, hugging, touching, and kissing count too. Even if you can’t manage intercourse, spending time together touching and talking can bring you deep, satisfying intimacy.