Having a chronic illness such as diabetes, arthritis, or multiple sclerosis can take a toll on even the best relationship. The partner who's sick may not feel the way they did before the illness. And the person who's not sick may not know how to handle the changes. The strain may push both people's understanding of "in sickness and in health" to its breaking point.
Studies show that marriages in which one spouse has a chronic illness are more likely to fail if the spouses are young. And spouses who are caregivers are six times more likely to be depressed than spouses who do not need to be caregivers.
Clinical psychologist Rosalind Kalb, vice president of the professional resource center at the National Multiple Sclerosis Society, says, "Even in the best marriages, it's hard. You feel trapped, out of control, and helpless."
But with patience and commitment, there are ways you and your partner can deal with the strain a chronic illness can place on your relationship.
"Finding ways to talk openly about challenges," she says, "is the first step toward effective problem-solving and the feelings of closeness that come from good teamwork."
Marybeth Calderone has limited use of her legs and hands because of a neurological disorder called Charcot-Marie-Tooth. Her husband Chris says that figuring out when to communicate is his biggest challenge.
"My wife gets frustrated with herself when she can't do things, like organize our 8-year-old daughter's desk," he says. "A lot of times, I'm not sure if Marybeth is angry at me or with her condition. Often, I try to figure it out on my own and don't say anything.”
The right level of communication is key. Boston College social work professor Karen Kayser says, "If the couple is consumed with talking about the illness, that's a problem. If they never talk about it, it's also a problem. You have to find a middle ground."
2. Ease Stressful Emotions
"The best way to deal with anxiety is to identify the root of the worry and find strategies and resources to address it," she says. Here are four positive steps you and your partner can take to help one another find relief from stress.
- To feel more in control, learn more about the condition and how to tap into available resources.
- Consider counseling. You can go together or separately for counseling with a therapist, minister, rabbi, or other trained professional. A good choice for building coping skills is to work with someone trained in cognitive-behavioral therapy.
- Watch for depression. Sadness is a normal response to chronic illness. But clinical depression doesn't have to be.
- Acknowledge the loss of the way your relationship used to be. You are both experiencing it.
Mimi Mosher is legally blind and has MS. The latest wrinkle in her marriage with John is her transition to use of an electric wheelchair.
"On a recent trip with friends," Mimi says, "I was content sitting near the beach drawing. But Jonathan wanted me to stroll with the group on the beach, which meant switching to a wheelchair with oversized wheels. Aesthetically, I didn't want to do it, but he convinced me. Sometimes you have to do things to please your partner."
3. State Your Needs
Kalb says a partner with a chronic illness may give mixed messages. When feeling good, your partner may want to do things on their own but then become resentful when others don’t step up to help when they aren't feeling as well.
Kalb recommends that if your the person with the illness be clear and direct about what you want because your partner isn’t a mind reader.
Chronic illness can often shift the balance of a relationship. The more responsibilities one of you needs to take on, the greater the imbalance. If you're providing care, you can start to feel overwhelmed and resentful. And if you're receiving care, you can feel more like a patient than a partner. Kalb says such a shift can threaten self-esteem and create a huge sense of loss.
You need to talk to one another about how to trade tasks and responsibilities, Kalb says. The Calderones have worked out their own system, although they admit it's not easy.
"I don’t drive anymore, so my husband drops me off and picks me up from work," Marybeth, who has been using a wheelchair for more than 20 years, says. "He does the cooking. But he doesn’t have a knack for meal planning so I do that."
"We’re equal partners," Chris says, "but I do the all the driving and cooking as well as home maintenance. It can be a burden."
4. Watch the Caregiver's Health
Whichever one of you is the caregiving partner needs to pay attention to your own physical and emotional health. “If you don't," Kalb says, "you won’t be able to help the loved one.”
To relieve stress, Chris plays basketball once a week. Physical activity provides an outlet for stress. So can confiding in a friend, knowing your limits, asking for help, and setting realistic goals.
Caregiver burnout can be a risk. Its warning signs include:
- Withdrawal from friends, family, and other loved ones
- Loss of interest in activities previously enjoyed
- Feeling blue, irritable, hopeless, and helpless
- Changes in appetite, weight, or both
- Changes in sleep patterns
- Getting sick more often
- Feelings of wanting to hurt yourself or the person you are caring for
- Emotional and physical exhaustion
If you are the caregiver and are having symptoms like those, it's time for to seek help both for your own well-being and to get support in caring for your partner.
5. Strengthen Social Connections
Chronic illness can be isolating. Having strong friendships is a buffer against depression.
But with a chronic illness, you or your partner may not be able to visit people’s homes if, for instance, one of you uses a wheelchair. Or one of you might pull back because you're afraid of being rejected, especially if the condition causes twitching or problems with bladder control. It's also possible you or your partner might tire easily, making it difficult to plan and follow through on social engagements.
“It’s become increasingly difficult for us to go to other people’s homes because of her wheelchair,” Jonathan Mosher says. “I’ve carried Mimi over many thresholds in the 23 years she’s had MS,” he says.
If you're the caregiver, you should feel free to socialize alone without feeling guilty about it. Keeping your own identity is important, Kalb says.
Kalb also suggests you and your partner keep a running list of things that need to be done so when friends or relatives ask what they can do to help, you’re prepared.
6. Address Financial Strain
Money can be a strain for any couple, and chronic illness can be a huge financial burden. You may have lost income because the illness made it impossible to keep working. You have increased medical expenses and even remodeling fees if your home needs to be made wheelchair-accessible. And whichever one of you is the caregiver may not be able to leave a job you don't like because of problems with insurance coverage.
You and your partner may want to work with a financial planner who has expertise in handling chronic medical conditions. Kalb recommends contacting the National Association of Personal Financial Advisors.
7. Prize Each Other
“My illness has made the marriage stronger in some ways," Marybeth says of her and Chris's relationship. "We’re a team. It’s been tough, but we try to keep the important things in mind, such as our two kids."
“We’re together all the time,” Jonathan Mosher says. “We’ve kind of morphed into one being.”
His wife Mimi says, “Do something kind for your spouse every day."
And that's good advice for any couple.