hronic disorders can have devastating consequences for couples. Challenges that threaten the relationship accompany the experience of serious or disabling illness in families, particularly when one of the partners in a marriage becomes ill. Rarely is illness openly acknowledged as a cause of divorce but its strains may lie at the root. The primary goal for couples facing this challenge, is to keep the illness in its place so it does not become a third party in the marriage relationship. Based on the work of John S. Rolland M.D. co-founder of the Chicago Center for Family Therapy, at the University of Chicago, this article aims at helping couples understand how a disorder can invade the relationship and learn strategies to keep that from happening. We identify four key areas which may help couples better understand and strengthen their relationships:

• Illness Perceptions and Beliefs
• Open and Effective Communication
• Intimacy
• Relationship Balance

eliefs are important because personal, family, and cultural beliefs guide our behavior. Our beliefs give continuity to life, helping to blend past, present, and future. Beliefs offer a window from which to view new and uncertain challenges such as serious illness. Experiences we have had and beliefs we have acquired throughout life can influence the meanings we attach to illness, our responses, and the ways in which we manage it. The most useful beliefs are those that sustain hope and empower couples instead of those that foster blame, shame, and guilt.³

Beliefs translate into meanings
 

Humankind’s quest is to make meaning of experience. Meanings we attach to illness are generally drawn upon from existing traditions, perceptions, and beliefs: some are inherited and some are acquired along the way. How a couple is affected by the experience of illness may have much to do with their individual and shared beliefs. Shared beliefs that allow a couple to work cooperatively, obviously will have an impact for good. Differing beliefs and individuals working at odds in their beliefs, can damage the relationship.

Belief systems are interwoven into each of the key areas of this discussion. Understanding the role of beliefs at differing stages of the illness and understanding the more damaging negative beliefs as opposed to more useful and positive beliefs is an important first step to gaining a sense of competence in managing the illness experience.

Negative illness beliefs

Some couples and individuals perceive illness in wholly negative terms and define well-being as freedom from adversity, especially illness. While no one is going to think immediately of illness as one of life’s positives, an illness perceived in negative terms will have much to do with an individual’s or couple’s illness experience. When illness is perceived with a sense of doom or viewed solely in terms of decline and loss,³ a negative experience is likely to follow. Negative illness beliefs seed unhappiness and depression. Negative beliefs do not empower.

Positive illness beliefs

Some beliefs support the view that normal life is something that exists in the world outside—outside the world of illness. Perceptions improve when illness is viewed as something that occurs inside the context of life. To view illness as a normal part of life allows couples to live life more fully in the present—a view that seeds positive returns. To view their own illness experience as what any average healthy couple might go through in a similar situation.³

Illness over time

Couples are better prepared to deal with a serious illness by learning early as much as they can about the illness and its patterns and course over time. This early awareness establishes a foundation for couples to better cope with illness demands. Much of the perceived tragedy and ability to accept illness relates to its timing and appearance. The practical and emotional demands of an illness are far different when its appearance is sudden and dramatic as opposed to one that appears gradually and signaled along the way. The timing of an illness as it pertains to a particular stage of life is also significant. Responses, demands, and challenges will differ when a serious illness occurs in the life of a young couple, a couple at mid-life, or one in their later years. 

The practical and emotional demands of an illness also differs during the various stages of illness, the crisis, chronic, or terminal phases. "For example, a critical task in the crisis phase involves developing a meaning for a health problem that preserves a sense of competence and mastery."³ A couple’s ability to manage an illness through the chronic phase may be the greatest test of a couple’s strengths and vulnerabilities. The course of an illness in the chronic phase may be better understood in terms of it progressive, constant, or recurring patterns. An important part of those early discussions may be to establish a timeline for illness-related tasks associated with different phases of the disorder as it unfolds over time.³

The couple as a functioning unit

Rather than fighting against it, couples are best served when they work toward integrating an illness into daily life. One of the most important understandings for couples to have is that everyone experiences the illness: both partners in a relationship and all members of a family.³ The couple needs to understand that each person suffers their own sense of loss, and each have their own periods of acceptance and adaptation. One topic of discussion that may be particularly difficult for couples are the roles of patient and caregiver; each role carries its own sense of burden, resistance, and guilt. The best plan is to maintain a relationship of equal partners for as long as it is possible. 

Couples tend to divide up tasks according to habitual patterns or stereotypical roles.⁴  Beliefs and established patterns in the handling of money, decision-making, independence, and caregiving may need to change. Discussing what is most reasonable in a given situation is key. Women may feel compelled as traditional nurturers to meet every detail of care whether is it comfortable for them or not and whether certain tasks would be more appropriately handled by the ill partner or by a professional. Where a wife is more likely to assume the husband’s role at the risk of overload, a husband may be more likely to hire someone to take over the wife’s role.⁴  Men are good at problem-solving and tasks that support a sense of competence. Being solutions-oriented, men are better at the practical aspects of coping, avoiding the emotional side.³ 

Managing an illness without allowing it to take over a marriage, may be to accept limitations and seek alternative solutions. To exchange roles without resentment and stand against tradition when it serves a meaningful purpose. To balance financial and decision-making roles based on need, and to continue life, incorporating illness into the daily routine rather than allowing the illness to define the routine . . . and the relationship. "Couples that master these challenges are those with the broadest and most flexible definitions of acceptable roles and those with alternative means of satisfying [essential] needs."⁴

Life transitions and changes

The seasons of life from childhood to early adulthood, and middle to late adulthood are each accompanied by a transition period. Transitions mark beginnings and are ripe with expectation. Some of a couple’s greatest challenges in managing an illness may come with these periods of transition. Times when the realities of the illness must be balanced in light of things to come and threatened loss. "At life cycle transitions, couples generally need to discuss issues of threatened loss openly and directly. They need to recognize how the disorder may require added flexibility and revisions."³

Awareness of these life cycles and the expectations invested at each transition allow for more effective management. A young couple may need to contemplate issues that surround child bearing, the ability to have a child, the importance of children, the size of family anticipated, dangers to the mother or child, matters of raising and supporting the child to adulthood. All these represent an expectation accompanied by threatened loss. Divided emotions are not uncommon. A wife caring for an ill husband may be required to work outside the home. More of the caregiving may be left to the children or extended family members. Adjusting to this shift and making it work over the long haul can be difficult for everyone involved, the wife who is torn between the need to work and the needs of her husband, the husband who may be less comfortable with others providing certain aspects of care, and the new caregiver who may be sacrificing one thing to do another. 

Dangerous ground

Some subjects are potentially loaded. Perceptions and beliefs about the causes, the nature, and visibility of an illness can bear weight on a couple’s relationship.  If one partner in a marriage smokes and develops lung cancer, that partner might be blamed by the spouse for bringing about his or her own illness and all the attendant consequences. Similarly, the partner who has become ill may harbor feelings of guilt over choices and consequences. A reverse sort of blame and guilt might occur when one partner becomes injured or disabled in an accident for which the other partner was responsible. In another situation, both partners might harbor ill feelings toward a family if the illness genetic is and inherited. One or both partners may hold beliefs that associate a particular illness such as depression as evidence of weakness or fault. Or they might view mental illness or highly visible illnesses, their own or someone else’s, with shame and embarrassment.

 Aside from the causes of an illness, beliefs about what can affect the outcome of an illness may also create conflict. Certain behaviors might be perceived as "causing" something to happen. Old wives tales, traditional beliefs, or current health reports may suggest certain cause and affects that may place founded or unfounded limits on the relationship. Couples should strive toward an early, informed understanding of the nature of the illness and what factors might truly affect an outcome—or not. Blame and guilt are damaging, negative attitudes and beliefs that clearly should be challenged, abandoned, and replaced with realistic and useful understandings.

Shame and secrecy

Serious illness in a family pounds at emotions closest to the core of the soul. When one partner in a marriage becomes ill, both partners are likely to ride a roller coaster of high emotions. Harboring shameful thoughts and feelings, however, puts a road block in the path of communication. "Couples need to be forewarned that having intense and seemingly irrational emotions toward one’s partner is natural in situations of illness and disability . . . Irrational anger, ambivalence, death wishes, or escape fantasies are typical."⁴ Often such thoughts are held closed to the vest and venting is almost inevitable. "Couples need to understand and forgive themselves and their partner for hurtful comments made in the heat of the moment."⁴

Approaching difficult subjects

A couple’s typically close conversations may become more guarded when illness enters the picture. Some subjects are difficult to approach, even in the healthiest of relationships. Fears come into play. Fears about hurting the other partner, worsening a condition, or putting the marriage at risk by bringing up difficult subjects. ³ Such fears are not uncommon. Early acknowledgment of this strain in communication is important for couples whose first task might be to lay down some ground rules. When both partners agree on a willingness to initiate conversation, one partner does not become the pursuer, the nag. Respecting each other’s readiness to talk is also important. One partner may need to talk at a time when the other partner is purposely avoiding the hard subjects. Among the most sensitive issues are death and dying. Couples often avoid the discussion of sexual intimacy. Additionally, certain subjects may be strictly taboo, for one or both partners. Couples should openly agree if certain subjects are off limits and then discuss the consequences of remaining silent. Strangely enough, the mere discussion of limits may broaden the boundaries.⁴

Deciding ahead of time how to communicate an openness to conversation is key. To avoid power struggles and the evasion of discussion, couples may want to set up a structured time and process for bringing up and discussing sensitive issues.⁴

Death and threatened loss

Couples facing a serious, life-threatening illness often tend toward one of two extremes: to deny the illness and distance from each other or to cling together.⁴ Early discussion of  loss is important, for both partners—not death only, but other kinds of loss as well: personal, family, physical, social, intellectual. Unfortunately, many couples wait until the later stages of illness when confronted more directly with the realities of loss—times when discussion may not come easily and loss is more imminent. However, as with all relationships, a balance is necessary—everything should not always be shared between partners. Sometimes it may be well for one partner not to share a particular belief. "Paul maintained the belief that he could beat cancer. His wife believed he would die from it but she confessed, ‘I never wanted to interfere with Paul’s goal, so I kept my feelings that he was going to die to myself or discussed them only with close friends. When Paul became terminally ill and needed to accept the inevitable, we talked more openly.’"³

Living with uncertainty, the "anticipation of loss in physical illness can be as challenging and painful for families as the actual death of a family member."⁴ Important aspects of threatened loss is to sustain hope, learning to live and cope with uncertainty, as well as preparing for loss throughout the course of the illness. One of the things families fear most is the pain and suffering of a loved one.

Understanding more about the illness and what to expect can help prepare them for illness in the later stages and their options. What couples might be most unprepared for is the vast range of fluctuating, complex emotions. Although "the meaning of possible loss evolves over time with changing life cycle demands."⁴ The loss is not less but perhaps easier to accept. Perspective can make all the difference. Sadness can replaced by the opportunity to develop more caring relationships. The "active creation" of positive experiences can replace passive waiting. A shift in emphasis from threatened loss to appreciate life, to joy in what is today, and to set goals more immediately attainable. Make the use of time well spent.

Anger

"A serious illness or disability can normally generate levels of upset well beyond any such thing people have ever experienced in the relationship, and this can be terrifying."⁴ Anger may be unavoidable. It simmers and sometimes explodes. It is a fearful emotion that must be differentiated from pathological anger or abuse. Feelings of outrage at being victimized by illness and the accompanying loss is not uncommon. As always, those closest to us are easy targets. The ability to have these emotions and the freedom to express them is an important outlet. The danger lies in the other partner’s becoming reactive and the whole thing erupting. A better solution is to redirect the anger toward the illness—externalize it. "Framing the illness in this way helps establish a boundary between the illness and the couple."³ The process of externalization encourages a greater sense of control over the illness and the emotions.

Wills and other arrangements

Early discussion of wills and directives concerning a possible terminal phase can foster a sense of balance and put each partner more at ease. Approaching such subjects later in the course of the illness could be uncomfortable and the timing misconstrued. "One couple facing the husband’s terminal cancer found the quality of their relationship enormously enhanced by early discussions about limiting life-saving efforts in the terminal phase. It gave the husband a sense of control over his death that reduced unbearable uncertainties and enabled him to focus his energies on living. It reduced fears for his wife about having to make life-and-death decisions without knowing his true feelings."³  Financial arrangements, matters of child-care, long-term care, and funeral preferences are best discussed early. In coming to terms with the realities of the ill partner’s situation, couples should seek a mutual understanding that threatened loss is a concern to both partners.

eep the illness in its place and "seize the day." This is the fight song of balance when illness enters the picture. Illness is an uninvited guest that must be incorporated into life. The illness does not define the person. It does not define the relationship. It does not define the family. It does not define life. One of the most challenging issues for couples is learning to maintain a functional balanced, mutual relationship given the weight of long-term care and the needs of the ill partner. Keeping principles of the fight song in mind when the going gets rough will help couples learn to balance the demands of the illness and the activities of life.

Keep the illness in its place

Accept the illness as "our problem" but keep it in its place. If not kept in its place, the illness may come to define the relationship. Couples should seek balance in the relationship. Discuss issues openly and seek to maintain an equal partnership. Couples should continue to express and resolve normal differences—don’t let the illness impede life. The illness should neither divide nor fuse a couple. The illness should neither be denied nor become an obsession. The illness should neither become a running mate nor governor. Limit its power. Make it not a Dr. Evil nor St. Joan.

Time out

In most relationships there is a healthy and necessary dependence and independence. Illness should not change this dynamic. Couples should seek to maintain individual personal boundaries: autonomy and a sense of self. More space may be needed at different times for each partner, over the course of the illness depending on each partners sense of meaning and loss. If not understood and respected, these periods of adjustment can be a major source of misunderstanding and conflict.

Balance of power

Each partner should avoid any temptation to pull the illness over to one side to tip the scales. An ill partner may feel somehow entitled while the other partner may feel the need to meet every need. Each partner should have their own roles. Traditional male and females roles are an important part of this dynamic. Above all, couples should avoid using the illness an excuse or weapon to gain control—as a rationale for continuing the illness to keep the benefits, or to justify infidelity.⁴ The couple and each partner should seek ways to live meaningfully with uncertainty and threatened loss and strive to maintain a healthy, balanced relationship.

Side by side

Couples share the experience of illness. "If the problem is defined as the exclusive domain of the ill partner, then serious power and control balances often develop. This leads to dysfunctional resentments, guilt, distancing, and general erosion of intimacy."⁴ An imbalance occurs when individual and couples conversation becomes burdened with metaphors of decline and loss. An imbalance occurs when all interactions are fused with the condition . . . unnecessarily. . . with due respect to those times illness is ever-present and all-encompassing. A serious imbalance occurs when the ill partner is identified solely in terms of the condition, at that point a third party takes over the relationship as the ill partner is fused with the illness. Strive to keep the relationship up close and personal.

Red alert

Balance is most threatened at life cycle transition periods. Limits and complexity may become heightened. There may be disappointments coming to terms with reality. One 35 year-old woman from England painfully recalls the image of her husband seated on a bench in the cafeteria of a mental institution, a psychotic manic-depressive. Having just completed a doctoral degree, she had accepted a position at a university in China, and had made the excruciating decision to continue her life and career and to leave England, taking her fourteen year-old daughter. Transition periods are hard times. Recognizing these periods and the issues they represent better enable the ability to manage through it. Do not become isolated. This is often a significant issue for young couples who may feel more isolated than most. It is important to continue regular associations and activities, maintain friendships, help friends and acquaintances over their initial awkwardness.

Patient and caregiver

Early education and discussion about the illness and caregiving needs over time is important preparation. "The serious illness of the wife presents the greatest overall risk to the couples’ and family functioning."⁴ Roles change. Consider patterns of care that may serve the crisis phase of an illness but not the long haul. Couples should be willing to consider and accept caregiving assistance from extended family members or adult children. Some aspects of care may be too difficult for the well partner, either physically or emotionally. In professional care decisions couples should consider and be honest about whose needs are being met and why. Couples and families need to respect each partners fears and anxieties about being placed in a care center or a nursing home, or being separated from their partner. The well partner may feel particularly isolated during times when a professional staff provides all care.⁴

 serious health crisis does offer couples an opportunity to deepen their relationship."³ A richer and more meaningful life can be experienced when couples seek to better understand and appreciate the source and influence of their beliefs, commit to openly discuss the illness and its demands over time, seek to define themselves as a functional unit, strive to develop an awareness of family life cycles and remain sensitive to changing needs of the couple and the illness.

1.   Frankl, Viktor E. (1984). Man's Search for Meaning:
        An Introduction to Logotherapy. (3rd ed.) New York. Simon & Schuster, Inc., pp. 9.
   
2.   Gibran, Kahlil. The Prophet. Random House.

 
3. Rolland, John. S. (1993). "Helping Couples Live with Illness." Family Therapy News.October,1993.  (when you click on this link, select Cancel at the password)

 
4. Rolland. John S. (1994). Families, Illness, and Disability: A Biopyschosocial Treatment Model. New York. Basic Books. pp. 165-195, 233-267.