Chronic Illness and Couples

Keeping love alive.

Posted Feb 13, 2019

Katie Willard Virant
Source: Katie Willard Virant

Have you ever watched a long-term couple cook together? They seem to perform an intricate, choreographed dance in which each partner knows instinctively which way the other will move. Likewise, couples who have been together for some time organize the nuts and bolts of their lives in highly ritualized and interlocking steps that create stability and fluidity. One partner picks up the children from school; the other makes dinner. One partner does the laundry; the other handles cleaning. They go out on dates every Saturday night, have sex weekly, and socialize with family and friends approximately every other week. None of these rules are written down anywhere, but they reflect “the way things are” and contribute to a feeling of shared predictability and security.

When one member of a romantic partnership becomes chronically ill, the dance of shared living that the couple has built together is stopped. The music changes and both partners find themselves looking at each other without a clue as to what happens next. A new dance has to be created, and it’s important to do this with positive intentionality.

Adaptation

Happy couples are those that can adapt. Even couples without the added challenge of chronic illness are called upon to adapt to the vicissitudes of life: children, job changes, relocations, aging. Life is change, and couples who can accept and navigate change are well-positioned to solidify and deepen their bond.

Chronic illness is an experience of continual unpredictability. From day to day, even from hour to hour, health can fluctuate dramatically. A person who can pick up the kids after work, cook dinner, and fold a load of laundry on Monday may spend Tuesday in bed. This not only disrupts her life, but it also disrupts her partner’s. Dinner still needs to be made, children still need care, and laundry continues to pile up. Typically the healthy spouse will compensate for the ill partner, adding her chores to his own. (Please note that while I am using a heterosexual couple as an example here, the experiences of gay and lesbian couples also fall under this umbrella.)

This is adaptation at work. However, it brings with it a host of stresses that can move partners apart from each other, leaving each isolated and frustrated. The following recommendations are designed to help couples adapt to chronic illness more smoothly so that they move toward each other and continue to grow in their relationship.

Acknowledging Grief Together

With chronic illness comes grief, both for the ill person and the partner who supports her. There is a pre-illness self that faced fewer limitations than her new, post-illness self. Perhaps she was energetic and now needs a great deal of rest. Maybe she enjoyed traveling and can no longer visit exotic places. Perhaps she used to socialize a lot and finds herself requiring more time to herself. Having changed profoundly, she faces the emotional task of grieving what she’s lost. This woman’s partner has also lost something important: The woman he fell in love with is different now, and he must grieve this woman and the life they shared together.

Sometimes, the unspoken knowledge that each member of the couple is grieving prevents partners from speaking their own grief. “It’s hard on her already; how can I risk hurting her more by telling her how much I miss our old life?” “He does so much for me; I can’t put more of an emotional burden on him by telling him how sad I am.” This wish to protect one another impedes communication. I ask couples to rethink this: Instead of each person retreating into themselves in order to offer protection to the other, can they imagine joining together to create a relationship that will protect them both?

When couples view the relationship as a space between them that they create and nurture—something that belongs to them both—they can risk vulnerability and be present for one another. This sacred space invites in communication about all kinds of feelings: guilt, anger, resentment, fear, love. Each member of the couple feels heard and is able to hear the other. When feelings can be spoken and received, they become part of the fabric of the relationship. An ill spouse who can bear her partner’s feeling of being overwhelmed can offer her understanding and comfort. A well partner who can tolerate his spouse's fear of being too needy can provide assurance and solidity.

Solving Problems Together

When grief can be processed together, couples can proactively problem-solve. There is a recognition that chronic illness is a shared problem affecting both partners, which promotes deep respect for the validity of each partner’s needs. Negotiation between the two transforms from a zero-sum game into a creative exercise designed to maximize benefits for the couple. The couple can use outside resources to help them stabilize, including looking outside of the dyad for help and calling on extended family, friends, and caregiver respite programs. They can change their standards of what is acceptable in order to ensure that they are not overwhelmed by daily tasks: Ordering in takeout dinners and developing a tolerance for a home that isn’t perfectly orderly are two examples of this. They can prioritize the relationship, recognizing that it may require more purposeful work than it did pre-illness.

Appreciating a New Normal

Change brings loss, but it also brings an opportunity for growth. Couples that see chronic illness as a shared challenge can find ways to connect that—while different from the old ways—are also satisfying. Couples’ sex lives are an obvious example, as sexual functioning often changes with illness. Couples facing this together can create new ways of connecting sexually, broadening their definition of sex. Intent matters: For couples who wish to be physically close, even hand-holding can be erotic. Similarly, finding new ways of spending time together that accommodate the illness is important to sustain emotional intimacy. Date night can be a night on the couch watching a movie or listening to music. Instead of viewing this as a less desirable solution, couples who get excited about sharing time together—even if it’s different from the ways they used to be together—are experiencing the positive benefits of a relationship.

If you and your partner are living with chronic illness, what does your “new dance” look like? Please share in the comments section below.

References

Ruddy, N.B. & McDaniel, S.H. (2015). Couple therapy and medical issues. In A.S. Gurman, J.L. Lebow & D.K. Snyder (Eds.), Clinical handbook of couple therapy (pp. 659-680). New York, NY: The Guilford Press.

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