Coping with the Chronic Illness of a Spouse

Sometimes couples are faced with problems they do not anticipate. One such issue is that of chronic illness. A chronic illness is a medical condition that lasts for a long time, sometimes for the rest of someone's life. Chronic illnesses include conditions like diabetes, arthritis, and cancer, among many others. Chronic illnesses may appear quickly or gradually, and they are often unexpected. Although facing a spouse's chronic illness is difficult, it does not have to be a wholly negative experience. The Family: A Proclamation to the World reminds us that "Disability, death, or other circumstances may necessitate individual adaptation" (¶ 7). There are some things that can be done to help spouses fulfill their "solemn responsibility to love and care for each other" (¶ 6), even in the face of chronic illness. In fact, if spouses work to handle this trial together, their marriage relationship may even be strengthened by the experience.⁸

Emotional Coping

Adapting to a spouse's chronic illness is challenging. Sometimes the condition calls for changes to life plans for the future, and often it calls for changes to your everyday lives. It is normal to feel fear, pain, and anxiety about the situation. Don't feel ashamed if you experience these emotions. When faced with the challenge of chronic illness, spouses often try to shield each other from the reality of the illness by not speaking openly of their fears and concerns.¹⁵ It may not be wise to share all your worries with your spouse. However, open discussion of some of your worries and concerns with one another can be helpful. By discussing your needs with one another, you can both learn how best to help each other. Relying on each other for emotional support can strengthen your relationship.⁸ Talking out your worries may help you overcome feelings of hopelessness.¹² When you allow yourself to ponder your worries and fears, in particular about how the illness affects your marriage relationship, your problems may seem bigger to you than they truly are.¹ Discussing your fears openly means they can be addressed.

Although it is okay to express negative emotions at times, try to be positive and optimistic in your interactions with your spouse.⁴ Your positive attitude can encourage him or her. Do not force yourself to be positive all the time; your spouse will sense it if you are hiding deeper emotions. However, though it is hard, if you keep a positive outlook about the illness, you will have an easier time coping, and your spouse may find your optimism encouraging.

There are some things you can do to foster a positive attitude. It may not be possible for your spouse's condition to be cured or fully controlled. Instead of focusing on what you can't do, make small goals that you can achieve. For example, although you cannot cure the illness, you may be able to assist with your spouse's treatments, take over some of your spouse's household tasks, or just be available for your spouse to talk to on a hard day. When you are helping in ways such as these, it can be easier to stay positive because you know you are actively doing what you can to make your spouse's life better.⁸ You may also consider keeping a journal of positive experiences, perhaps setting a goal to record one positive experience a day.⁸ This exercise may help you focus on finding the positive in your daily life.

Chronic illness can trigger some painful emotions in you and your spouse. If you or your spouse are really struggling to cope with the situation, you may consider seeking professional help.⁸ A counselor or therapist can help you better handle your emotions and new responsibilities. You may also consider joining a support group for others with family chronic illness. Speaking with others who are facing challenges similar to your own can help you feel less isolated. The Mayo Clinic's website offers advice on how to find a support group here.

Communication

Talking about the illness together requires balance. Be considerate of your spouse's needs and feelings. Understand that sometimes one of you will need to talk about the illness, when the other needs a break from discussing the issue.¹⁶ Sometimes your spouse may just need you to listen to him or her vent frustrations. Reassuring your spouse of your love for them can be comforting at these times. A study by Fekete, Stephens, Mickelson, & Druely found that the more spouses listen to and express affection for their partners when they are upset about the illness, the more partners felt validated by the support.⁶

Choices may need to be made about treatment or other concerns. You and your spouse may have different views on what is to be done. As you discuss your options, remember to listen to what your spouse has to say. Try to understand his or her point of view. Be opening in presenting your feelings and thoughts about the situation. Although you approach the situation together, in the end, your spouse is the one who will have to undergo the treatment, and thus your spouse may have the ultimate say in making the decision. Be respectful of their choice, even if it is not the choice you would have made.

Some of your behaviors, and those of your spouse, may have to be adjusted to deal with the illness. You may need to help remind your spouse to monitor their activity level, their diet, or their medications. As you do this, be careful not to be critical of your spouse. If you need to address a problem, remember to direct your comment towards the action rather than your spouse. For example, instead of saying, "You never remember to take your medications!", you could say "Did you take your medication today?" Also, be careful to word your comments as "I" statements rather than "you" statements.⁹ For example, if your spouse has been diagnosed with diabetes, but she is not following her dietary restrictions closely, you could say "I am worried that that food isn't good for you," rather than "Why can't you just watch your diet?"

Realize that the illness may affect your relationship with each other. If you discuss what influence the illness may have on your marriage, you will be able to anticipate and prepare for difficulties you may face.¹ Remember to talk about topics besides the chronic illness.¹² Because the illness may limit your chance to interact physically or spend time in leisure activities with your spouse, discussing your relationship may be especially important at this time, in order to keep it strong.^{1, 3} Remember to give your spouse compliments to help him or her feel valued.

Handle the Situation Together

When husbands and wives tackle the illness together, it can be easier to keep a positive outlook.⁴ Couples who know they are going through this as a team may be less stressed and worried. Think of the illness as "our" illness and "our" problem instead of "your" illness and "your" problem. It may be helpful to refer to the illness as such.¹

Remember to take time for your relationship. Keeping your marriage relationship strong can help you better cope with the disease.⁴ You can do this through small acts such as spending a few minutes together each day, or by going out together on dates.⁸

Depending on the severity of the illness, your spouse may not be able to participate in household tasks as much as in the past. However, continuing to let your spouse take part in tasks within his or her ability can help your spouse feel useful.^{4, 7} Be careful not to be overprotective of your spouse, but to keep him or her as an equal partner in your relationship. Allow your spouse to play a role in decision making about the illness and family life. Also allow him or her some independence, if possible. Allow him or her to do the things for him or herself that can be managed.

Be informed about the illness. Seek out information from your doctor and from reputable medical websites. Organizations may exist to help those with your spouse's chronic illness. Learning about the condition will help you know what to expect. Studies have shown the importance of sharing expectations for the illness. When the ill spouse feels he or she is unable to meet family expectations about the illness, he or she may become depressed.¹⁰ By sharing your expectations, you can come to a great understanding of what your spouse can and can't do. Also, your spouse may think you expect things from him or her that you aren't truly expecting. Discussing your expectations will clarify what you are expecting.

Support From Friends and Family

Remember that you are not in this alone. The Proclamation reminds us that "Extended families should lend support when needed" (¶ 7). Your friends and members of your church congregation also stand by to give you their support. Turning to your friends and family for their help and support can strengthen you and your spouse, and help you to handle the situation.⁴ Sometimes your family members might not be sure what they can do to help, although they want to be of assistance. Don't be afraid to ask them to help with specific tasks or challenges you are facing. Sometimes you may just need to talk to them about the problems you are facing. Research has suggested that relying on others, instead of your spouse only, for emotional support may help you feel more positively about yourself and your efforts to help your spouse. In turn, feeling positively about your efforts to help may help you avoid feeling emotionally drained.¹⁷

Take Care of Yourself

Even as you care for your spouse, make sure to take some time for yourself. Stay involved in outside activities, even if you are just attending your children's sports games or going to church socials.⁸ Keep in touch with family and friends. Don't be afraid to ask for help if you need it. Remember that your emotions and your needs are still valid, even if sometimes you need to put your spouse's needs first. Sometimes it can help to have a good friend to talk to about your challenges, although you should be careful to respect your spouse's privacy as well.

Remember that the work you are doing is worthwhile, and helpful to your spouse. Sometimes well spouses fail to realize the value of their efforts to assist, but their efforts are immensely beneficial to their spouses. Give yourself some credit for the work that you do. You may find it helpful to ponder positive attributes that you are developing through your service to your spouse. Research suggests that caregivers can develop positive traits, such as a higher self-esteem, a sense of worth for being needed, stronger spirituality, increased patience, and delayed gratification. In addition, caregivers may become closer to their spouse, and to other friends and family who offer their assistance.⁸

Conclusion

Facing your spouse's chronic illness can be difficult. Remember you are not alone. Friends, family, and support groups stand by to assist you. God watches over you. You also can rely on your spouse for emotional support. Facing this challenge together as a team can make it less daunting, and the experience may even bring the two of you closer than ever before.

Additional Resources

http://www.wellspouse.org

http://www.aarp.org/family/caregiving/

For spouses of MS patients: http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/index.aspx

For spouses of cancer patients: http://www.cancer.org/docroot/HOME/cgv/cgv_0.asp

For spouses of diabetes patients: http://www.diabetes.org/

For spouses of arthritis patients: http://www.arthritis.org/

Written by Shelece McAllister, Research Assistant, and edited by Susanne Olsen Roper and Stephen F. Duncan, professors in the School of Family Life, Brigham Young University.

References

1. Acitelli, L., & Badr, H. (2005). My illness or our illness? Attending to the relationship when one partner is ill. Couples coping with stress: Emerging perspectives on dyadic coping (pp. 121-136). Washington, DC US: American Psychological Association.
2. Badr, H. (2004). Coping in marital dyads: a contextual perspective on the role of gender and health. Personal Relationships, 11(2), 197-211.
3. Badr, H., & Acitelli, L. K. (2005). Dyadic adjustment in chronic illness: Does relationship talk matter? Journal of Family Psychology, 19(3), 465-469.
4. Badr, H., & Carmack Taylor, C. L. (2008). Effects of relationship maintenance on psychological distress and dyadic adjustment among couples coping with lung cancer. Health Psychology, 27(5), 616-627.
5. Berg, C., Wiebe, D., Butner, J., Bloor, L., Bradstreet, C., Upchurch, R., et al. (2008). Collaborative coping and daily mood in couples dealing with prostate cancer. Psychology and Aging, 23(3), 505-516.
6. Fekete, E., Stephens, M., Mickelson, K., & Druley, J. (2007). Couples' support provision during illness: The role of perceived emotional responsiveness. Families, Systems, & Health, 25(2), 204-217.
7. Fergus, K. D., Gray, R. E., Ritch, M. I., Labrecque, M., & Phillips, C. (2002). Active consideration: Conceptualizing patient-provided support for spouse caregivers in the context of prostate cancer. Qualitative Health Research, 12, 492-514.
8. Gordon, P., & Perrone, K. (2004). When spouses become caregivers: Counseling implications for younger couples. Journal of Rehabilitation, 70(2), 27-32.
9. Gottman, J. M. (1999). The seven principles for making marriage work. New York: Crown.
10. Hatchett, L., Friend, R., Symister, P., & Wadhwa, N. (1997). Interpersonal expectations, social support, and adjustment to chronic illness. Journal of Personality and Social Psychology, 73(3), 560-573.
11. Hinnen, C., Ranchor, A., Baas, P., Sanderman, R., & Hagedoorn, M. (2009). Partner support and distress in women with breast cancer: The role of patients' awareness of support and level of mastery. Psychology & Health, 24(4), 439-455.
12. Kershaw, T., Mood, D., Newth, G., Ronis, D., Sanda, M., Vaishampayan, U., et al. (2008). Longitudinal analysis of a model to predict quality of life in prostate cancer patients and their spouses. Annals of Behavioral Medicine, 36(2), 117-128.
13. Langer, S. L., Brown, J. D., & Surjala, K. L. (2009). Intrapersonal and interpersonal consequences of protective buffering among cancer patients and caregivers. Cancer, 115(S18), 4311-4325.
14. Manne, S., & Badr, H. (2008). Intimacy and relationship processes in couples' psychosocial adaptation to cancer. Cancer, 112(11,Suppl), 2541-2555.
15. Manne, S., Norton, T., Ostroff, J., Winkel, G., Fox, K., & Grana, G. (2007). Protective buffering and psychological distress among couples coping with breast cancer: The moderating role of relationship satisfaction. Journal of Family Psychology, 21(3), 380-388.
16. Rolland, J. S. (1994). In sickness and in health: The impact of illness on couples' relationships. Journal of Marital and Family Therapy, 20(4), 327-347.
17. Ybema, J., Kuijer, R., Hagedoorn, M., & Buunk, B. (2002). Caregiver burnout among intimate partners of patients with a severe illness: An equity perspective. Personal Relationships, 9(1), 73-88.

The Family: A Proclamation to the World states that "Husband and wife have a solemn responsibility to love and care for each other" (¶ 6). When one spouse contracts a chronic illness, he or she may require more care than ever before. Life adjustments may be required to accommodate the illness, leading to changes in life plans for the future. Understanding and adapting to a spouse's illness is difficult, but God stands by to assist us through even this difficult trial.

Shifts in Roles

The Proclamation reminds us of men and women's separate, sacred responsibilities in the family. However, it also reminds us that "Disability, death, or other circumstances may necessitate individual adaptation" (¶ 6). Sometimes an ill spouse may not be able to fill his or her role as in the past. For example, an ill husband may not be able to work any longer, or an ill wife may have difficulty completing the housework. Adaptations may be required, as well as some role shifting. Adjusting to such a role shift may be difficult for both you and your spouse. Remember that "the worth of souls is great in the sight of God" (D&C 18:10). You may be serving your family in a different capacity than you expected, but your work is vital and God appreciates your efforts.

Adversity in Mortality

Sometimes, it may be tempting to ask why your family is experiencing this chronic illness. At times you may even wonder if it has happened because you have done something wrong. That line of thinking comes from the adversary. In John 9, the Savior meets a man who has been blind from birth. His disciples ask, "Master, who did sin, this man, or his parents, that he was born blind?" (John 9:2). Jesus answers and tells them that the man's blindness is not a result of sin. Chronic illnesses are not given to us as a punishment. Rather, as part of mortality, our bodies are imperfect and subject to illness. Thus, sometimes chronic illness is a trial we will experience as we live in our mortal state.

We came to this earth to live and grow to be more like our Father in Heaven. In this way, our earth life is a divine educational experience, and President Henry B. Eyring has said that "That education can come only as we are subject to trials while serving God and others for Him. In this experience we experience misery and happiness, sickness and health, the sadness from sin and the joy of forgiveness".¹ Elder Neal A. Maxwell counsels us that "our knowledge of the Savior, Jesus Christ, and His Atonement helps us to endure our trials and to see purpose in suffering and to trust God for what we cannot comprehend".³

The Proclamation reminds us that "marriage between a man and a woman is ordained of God" (¶ 1). Elder Bruce R. McConkie once described marriage as "a unit more important than the Church, more important than any organization that exists on earth or in heaven, a unit out of which exaltation and eternal life grow".⁵ Marriage is the highest transformative order established to help us become more like our Father in Heaven. Thus, some of our Gethsemane experiences here may include those that test our devotions to our spouse, regardless of his or her ability to reciprocate.

Seek Support

Dealing with chronic illness can feel like an isolating experience. Remember that you are never alone; the Savior understands all the pains, fears, and sorrows you have ever experienced. Elder Neal A. Maxwell once said, "[O]ur knowing of Jesus' perfect empathy for us individually will help us greatly to endure our pains of various kinds".⁴ Studying the Savior's life and mission may be especially comforting at this time. In addition to turning to the Savior, we can also turn to our family and ward members for assistance. Ministers especially stand ready to help you in any way they can. When we are baptized into the Church, we all are called "to bear one another's burdens, that they may be light" and to "comfort those that stand in need of comfort" (Mosiah 18:8-9). Allowing your ward members to serve you and your spouse can strengthen them as well as you. You may also find ward members who are currently in a similar situation as you, or perhaps ward members who have been caregivers for chronic illness in the past. Speaking to others who have experienced or are experiencing a similar challenge may help you to feel less isolated.

Pray for Strength

Caregiving for your spouse can be a difficult burden to bear. God can grant you strength as you face this challenge. In a conference talk given in October 2006, Elder Dallin H. Oaks reviewed the story of Mosiah 24. This chapter speaks of a time when Alma and his people are held captive and forced to do heavy labor. In verse 14, the Lord promises them that he will lighten their burdens, "that even you cannot feel them upon your backs, even while you are in bondage, and this will I do that yet may stand as witnesses... that I, the Lord God, do visit my people in their afflictions." Elder Oaks states that "This same promise and effect applies to you mothers who are widowed or divorced, to you singles who are lonely, to you caregivers who are burdened, to you persons who are addicted, and to all of us whatever our burden [emphasis added]".⁶ As you care for your spouse, also remember that "it is not requisite that a man should run faster than he has strength" (Mosiah 4:27). At this time, it is important to take care of yourself also.

Conclusion

Dealing with a spouse's chronic illness is a difficult trial, but even amidst adversity, "men are that they might have joy" (2 Nephi 2:25). Elder Richard G. Scott has said, "True, enduring happiness, with the accompanying strength, courage, and capacity to overcome the greatest difficulties, will come as you center your life in Jesus Christ".⁶ Elder Yoshihiko Kikuchi reminds us that "life is eternal and love is eternal, even through days of sickness and health".² As you and your spouse face this trial together, you may come to have a greater love and appreciation for one another.

Additional Resources:

http://www.disabilities.lds.org/disabilities/eng/disability-list/chronic-illness

Written by Shelece McAllister, Research Assistant, and edited by Susanne Olsen Roper and Stephen F. Duncan, professors in the School of Family Life, Brigham Young University.

References

1. Eyring, H. B. (2009, May). Adversity. Ensign, 23-27.
2. Kikuchi, Y. (1988, May). Daughter of God. Ensign, 76.
3. Maxwell, N. A. (2001, October). Testifying of the great and glorious atonement. Ensign, 10.
4. Maxwell, N. A. (1997, April). Enduring well. Ensign, 7.
5. McConkie, B. R. (1978, June). Celestial marriage. Ensign, 12.
6. Oaks, D. H. (2006, November). He heals the heavy laden. Ensign, 6-9.
7. Scott, R. G. (2006, November). The atonement can secure your peace and happiness. Ensign, 40-42.