Happily Ever After

Even the strongest partnerships can falter when chronic illness moves in and makes it a threesome. Here's how to keep love alive.

By Melissa Bienvenu

The bride was beautiful.

The groom was nervous.

They promised to love, honor and cherish, so long as they both should live. Of course they meant every word about better and worse, richer and poorer, sickness and health, but they never imagined that a painful chronic illness would join them on their way to happily ever after.

Holding on to wedded bliss is challenging in the best of health, and a serious illness can rattle the foundations of even a match made in heaven. "Chronic illness creates a lot of stress in a marriage," says Judith Wallerstein, PhD, who wrote, with Sandra Blakeslee, the best-selling book, The Good Marriage: How and Why Love Lasts.

Persistent illness magnifies the routine stresses of marriage: money, sex, child-raising, careers, recreation and social life – all emotionally-packed issues. And besides complicating the logistics of everyday life, ongoing health problems stir up decidedly unromantic feelings of anger, grief, fear, frustration, depression, guilt, low self-esteem or resentment – "powerful feelings that ricochet into the marriage," notes Wallerstein.

"If the marriage is on shaky ground prior to the chronic illness, the illness exacerbates the problems. If it's been a troubled relationship, then people really have a much harder time, because you don't have that history of love and friendship to cushion the illness," she says. "What happens in any crisis, whether it's a hurricane or an illness, is either you grow and become strengthened [so] the relationship becomes strengthened, or it falls apart."

Chronic illness doesn't have to be a prescription for marital misery. Many couples learn to cope successfully with their new situations, and some even come to feel the disease brings them closer, forcing them to re-examine their relationship and mend the weak spots.

Here is some advice from experts and couples about how to keep love alive in sickness, when you need each other more than ever.

Saying No to Denial

Accepting the realities of an illness is an important first step – and often a very difficult one both for the person who has the illness and for the spouse. Because the symptoms of chronic illness can be inconsistent or invisible and may even take years to diagnose, it's sometimes easier for the sick person or the spouse to pretend the symptoms are no big deal or that they don't exist at all. That can spell trouble.

"One of the big things is for the healthy person to be willing to accept that something is chronically wrong with their spouse," says Anthony Johnson of West Monroe, La., whose 53-year-old wife, Sharon, has fibromyalgia. "It's a sickness they can't help, and that may not get a lot better. I've heard people with arthritis say, ‘Nobody understands that I hurt.'" Johnson believes it is crucial to communicate sympathy and understanding. "Being willing to accept the limitation of the other partner is one important thing."

While either partner (or both) may suffer from head-in-the-sand syndrome, it's typically the healthy spouse's disbelief that causes friction, especially when the partner doesn't "look" sick. Many times the real problem is faulty communication.

"I've had women who said, ‘My husband kind of thought I was faking it,'" says Kathleen Dwyer, PhD, an assistant professor at the Vanderbilt University School of Nursing in Nashville, Tenn., who has studied the effects of rheumatoid arthritis on wo- men's family relationships. "A lot of these turned out to be women who tend not to talk a lot about their disease or how they're feeling. A lot of these women feel they're sitting on a fence. They're caught between letting their husbands know how they feel and being labeled ‘sick' or ‘a complainer.'"

Facing facts, however frightening, is vital to mutual coping. You can't begin to solve a problem if one or both of you refuse to acknowledge it.

"To recognize suffering and be willing to express the recognition is the first step toward transformation," writes psychologist Polly Young-Eisendrath in her 1997 book, The Resilient Spirit. "What we see among the resilient, among those who transform their suffering into growth and development, is always that first willingness to recognize and express their pain. ..."

Wallerstein says there are striking differences between couples who stay together during an illness and couples who don't. Those who do, she says, "recognized realistically what this was all about. They didn't pretend [the illness] would go away, and they didn't pretend it was nothing."

According to Nelson Hendler, MD, author of How To Cope with Chronic Pain and director of the Mensana Clinic in Stevenson, Md., people with chronic illness often go through predictable emotional stages.

During the first two months or so a person experiences symptoms, or "the acute stage," Dr. Hendler says, he expects to get well and has no real emotional trouble. From two to six months, the "sub-acute stage," the person realizes he is not getting well and begins to worry he never will. In the "chronic stage," which can begin some six months after symptoms surface and last up to eight years, the sick person "is depressed and realizes he is stuck with this pain." At some point between three and 12 years into the illness, or the "sub-chronic stage," a person still may not "really accept their pain, but they learn to adapt," Dr. Hendler says. "They change their goals. They realize, ‘I won't ride my motorcycle or play ball again, but I can do something else.'"

How far along you are in this process can determine whether you are ready to deal effectively with the problem, Dr. Hendler says.

Talking It Over

In good health or bad, getting your message across is essential to getting along. This especially applies to people with arthritis, because it may be difficult to know from one day to the next how the ill partner will be feeling. Often there are no outward signs of discomfort.

"I think the most important thing is to actually sit down and talk to your family," stresses Dr. Hendler. "Ask ‘What can I do to make your life easier?' And say, ‘Here's some things you can do to make my life easier – like not screwing the top on the pickle jar so tight.' It doesn't sound like much, but all those little things add up."

Expecting your beloved to read your thoughts is a common mistake, adds Jean Moore, leader of an Arthritis Foundation Self-Help Course in Monroe, La. "A person may go through years and years of not getting the support of a spouse simply because they don't know how to communicate. You may have to tell them, ‘There are days when my hands or my back hurt me so badly that I can't do certain things. Will you help me on those days?' Just lay it out for them one-two-three."

When your partner talks, be sure you are really hearing him or her, says Dwyer. "Among the couples that I talked to where there seemed to be a level of emotional closeness, they were very tuned in to each other. They listened to each other. There wasn't a lot of interrupting. They were able to verbalize their feelings and their reactions to what was going on."

How can you be sure you're getting the point?

"One thing that is really helpful, when someone is talking with you, is to stop them periodically and say, ‘Let me make sure I understand what you mean,'" suggests Dywer. "Then try to summarize back to them what the person has told you just to see if you are getting their meaning. That doesn't put the burden on the individual who is doing the talking…. It doesn't put anybody on the defensive."

The fear of being labeled a whiner or stigmatized as "sick" can make chronically ill people be silent at the wrong times. Then there is the noble but sometimes harmful intention of shielding a healthy spouse from the problems, adds Renee Lyons, PhD, a researcher on chronic illness and relationships and professor at Dalhousie University in Nova Scotia, Canada. "We hear that so much with relationships: Don't make an issue of the disability. So rather than people dealing with the problems, the problems aren't even talked about."

But happy couples typically let it all hang out – as did the ones featured in Wallerstein's book. "They didn't try to hide their feelings," she notes. "Sometimes they got cranky and sometimes they lost their temper, but they always understood this was related to the tension about the illness – not, ‘Oh my God. He's got a girlfriend.' They didn't try to be martyrs or saints."

Learning Curves

Fear of the unknown causes some spouses to turn a blind eye to the suffering of their partner. Consciously or not, they may worry how the illness will change their relationship or their lifestyle. Yet dealing with a chronic illness is like dealing with a strange noise in the middle of the night: It's much better to get up and investigate than to lie there terrified, imagining the worst.

Ignorance may prevent a spouse from supporting a partner who is ill. Researchers who study couples in chronic illness say the best-adjusted are those in which the healthy partner educates himself or herself about the other's disease.

The couples "doing pretty well" in Dwyer's study were those who were "knowledgeable about the disease and what was going on physically" with the women, who had the disease, Dwyer says. "They also know about the treatments, exercises, massages, all that. Both members of the couple seemed to understand and know about the kinds of treatments that might be helpful."

When Dwyer asked her research couples what was the most helpful tool for managing the illness, most agreed that education was near or at the top of the list. Some had done research on their own. Some had requested information and materials from physicians.

The couples Wallerstein studied who were dealing successfully with chronic illness tended to be "very supportive of each other in medical stuff," she says. For example: breast cancer patients whose husbands – rather than a female friend or relative – accompanied them to checkups and chemotherapy sessions.

Moore has noticed that "people who got the most out of our self-help group were the ones whose spouses came with them. It seemed very important for the spouse to learn what arthritis is or what [the partner's] particular type of arthritis is" and how other people are affected by it.

Since Sharon Johnson was diagnosed with fibromyalgia about five years ago, her husband Anthony has been attending fibromyalgia support group meetings with her. "He was the one who found out about the meetings," Sharon says. She credits Anthony's support with enabling her to continue working full-time as a Medicare clerk.

"It's not easy," she says. "If not for my husband, I don't think I could continue. He's just a super husband. About five years ago I told him this pain was about to get the best of me. He went and checked out several library books on pain."

Anthony explains, "One way I try to be supportive of her is I do a lot of research and reading about fibromyalgia…. I've probably done more than she has. Since we've had a computer, we've done a little research about fibromyalgia and arthritis on the Internet."

Sharon adds gratefully, "Sometimes he brings me copies of things from the library, which really helps because after work I don't feel like going and searching for these things."

The world needs more spouses like Anthony, says Dwyer, whose research revealed that chronically ill women often wish their husbands showed more interest in their condition.

"When that's not there, her overall sense of well-being is impacted," says Dwyer. "Those women tend to view themselves as not doing quite as well."

Helpmates and Helping

Daily chores and responsibilities are frequently a bone of contention among couples, perhaps especially among couples living with a chronic illness. It's not simply a case of good spousal help being hard to find; there are occasions when the sick person feels suffocated by family members' good intentions.

This is especially true when the man is the disabled spouse, says Vicki Helgeson, PhD, associate professor of psychology at Carnegie Mellon University in Pittsburgh.

"I've found a pattern of behavior that is particularly damaging," warns Helgeson, who has studied gender roles among couples in which one partner has heart disease. "The [ill husband] is non-compliant, unwilling to ask for help, whereas she's really trying to help too much…. It's a vicious cycle of her helping him and making him feel more dependent… because one of the features of chronic illness is that you are not as independent as you used to be.

"[Those couples] usually end up getting into a lot of arguments. She's trying to tell him what to do and he's telling her he doesn't need her help and walking out of the room."

Yet a sense of self-reliance can be just as important for women, notes Dwyer.

"A lot of women I've interviewed talked about how family members would jump in and say, ‘Why don't you sit down,'" recalls Dwyer. "They would tell me, ‘I just want to wring their necks. I'm not a cripple.'

"It's really a Catch-22, because there are some women who've said, ‘I really appreciate the fact that I don't have to ask [for help]'…. Part of coping is figuring out within your family unit what works for you. But in everyday life we have a hard time figuring that out," Dwyer admits, "much less within the context of a chronic illness."

Often the best help simply allows those who are ill to do more for themselves.

Carol Webster, now 68, has struggled with arthritis in her hands since she was 26. When she and husband Ned decided to build a retirement home eight years ago, they designed it with special features to make her life easier. Ned has even invented devices to help his wife get through her daily activities, including one for pumping gas. The two seem to delight in finding new ways of doing things.

"We have always been close and worked together," Ned explains. "We raised seven children and have been married 49 years."

Not everyone is blessed with a spouse who is so able or eager to help. Instead of feeling resentment, it's important for the sick person to remember that the partner may be confused, too, adds Lyons. "People find it really hard to know what to expect from someone else in terms of performance, in terms of housework, sex, even fatigue."

People with arthritis, who may feel good one day and not good the next, she adds, may themselves have trouble judging what they can and can't do.

How do you handle this situation? It goes back to good communication skills.

"Look at any changes through the eyes of your spouse," advises Robert H. Phillips, PhD, in his book, Coping with Rheumatoid Arthritis. "Consider how you'd feel if the situation were reversed. Think how upsetting it would be if you no longer had time for things you enjoyed because of added responsibilities and pressures. Discuss it reasonably, and be gentle."

The most loving couples, Wallerstein observes, take empathy a step further. "They try to protect each other from feeling ashamed…. A person who is ill feels in some ways, ‘I'm half a person,' and [tries] to keep the other person from feeling badly about the burden they're feeling.

"The healthy spouse responds in kind, saying, ‘Look at all the things you can do. And the things you can do are more important to me than the things that you can't.'"

Still, if you can't count on your spouse, you may have to take the initiative and find what you need elsewhere. Sarah Jones (not her real name), for instance, turned to support groups for education and for the empathy she does not get from her family, a husband and two grown sons still living at home.

"All three of them just don't seem to understand there are certain things I just can't do," says Jones. "When I suggest that somebody else do it, they're always busy doing something else and pretty soon they forget."

Rather than become an embittered "nag," as Jones puts it, she sought emotional support from outside sources. Now she thanks "friends, support groups and prayer" for enabling her to carry on with her full, active life. Her family hasn't changed, but Jones has.

"A lot of people definitely rely on support groups for real communications," notes Lyons. "They realize that the need to talk about their health problem is not going to be met within the family."

Keeping the Glass Half-Full

A positive attitude always helps, but for couples navigating through chronic illness, it can be critical. Partners in good marriages that endure poor health find a way to make the most of a bad situation, even when they can no longer do the things they once enjoyed together, notes Wallerstein.

"The couples in my book emphasized the things that they could enjoy together," she notes, "whether it was home movies, opera, flowers, or whatever… The point is you want to emphasize pleasures to offset the deprivation."

Sharon and Anthony Johnson, for example, have had to cut back on socializing with friends, and he has had to curtail his hunting and fishing activities, yet they have found other ways to be with each other – tinkering with their home computer and playing games.

As difficult as it may be to believe, a chronic illness can turn out to be an occasion for strengthening a relationship, a milepost on the way to that happily ever after.

Melissa Bienvenu's work has appeared in House Beautiful and other national magazines.

Be Good to Yourself

If you have a chronic illness, taking good physical and emotional care of yourself will benefit both you and your spouse.

"The most important thing a person can do is exercise," says Jean Moore, an Arthritis Foundation Self-Help Course leader in Monroe, La. "First of all, exercising releases endorphins, which make you feel better. But it's also part of pain management….That, in a great way, affects your relationships. You're feeling better and you have to rely on people less."

Many communities offer the Arthritis Foundation P.A.C.E. (People with Arthritis Can Exercise) program. Ask your doctor to help you find a regimen that suits your needs. Many people also believe strongly in massage therapy and relaxation techniques to help put their minds and bodies at ease.

© Arthritis Today, September-October 1997