Chronic Illness and Relationships
When romantic partners are caregivers.
Posted February 12, 2020 | Reviewed by Gary Drevitch
Illness challenges relationships. It’s no wonder that many wedding vows contain a promise to love one another “in sickness and in health.” Chronic illness affects, not only the person bearing the symptoms, but also the person loving them, living with them, and caring for them. As one partner expressed to me, “My wife lives with the illness, and I live with her. So, in a way, I live with the illness, too.”
Partners Experience Losses
Partners of people living with chronic illness face several losses (Rees, O’Boyle, & MacDonagh, 2001). They may lose time and energy, as they work to pick up household chores that the ill person can no longer accomplish. They may lose intimacy with their ill partner, whose focus on illness necessitates less attention to the relationship. They may lose prior ways of being together in relationship, as symptoms limit activity types and levels. They may lose social connectedness with others, as illness requires more of a home-bound life. They may lose sexual connection, as illness saps desire. They may lose mental and physical well-being, as worry about their spouse’s illness drains their equanimity.
Partners are hurting, and they often hurt in silence. Researchers found that many partners “seem unwilling to reveal the true burden they are experiencing, perhaps for fear of seeming disloyal to their spouse (Rees, O’Boyle, & MacDonagh, 2001).” Partners often feel neglected and ignored by people who don’t understand the toll that caregiving takes (Courts, Newton, & McNeal, 2005). Friends and family who inquire about the person living with illness often forget to ask about the needs of the caregiving partner.
Meeting Partners’ Needs
Those of us who live with chronic illness are aware of how much our partners do for us. We often feel selfish, guilty and depressed for “not pulling our weight” and for “being too needy.” While it’s true that our illness creates limitations that affect our partners, it’s also true that we can recognize our partners’ needs and meet them creatively.
Household Responsibilities. We can have honest conversations with our partners about household chores and responsibilities. What are the chores that the person living with illness can do, and what are the ways that the family can work together to pick up the chores that the ill person cannot do? Perhaps the house will be messier and the laundry will be done less frequently. Perhaps when friends and family ask how they can help, the couple will have a list of “to-dos” that they can pass on. Communication is essential. When partners fail to communicate due to worrying about upsetting each other (as often occurs in illness situations), they disengage to the detriment of the relationship (Dalteg, Benzein, Fridlund, & Malm, 2011).
Social Connectedness. We who live with chronic illness often bemoan our own isolation. Symptoms and fatigue can limit the energy we have for socializing with others. Our loyal partners often sit home with us. Can we give them the gift of seeing their isolation and encouraging them to overcome it? We can urge them to go out with co-workers, join a gym, or pick up a neglected hobby. Helping them to rediscover parts of themselves that have nothing to do with caregiving and also facilitate their connection to other people is a loving way to care for them (Pierce, Thompson, Govoni, & Steiner, 2012).
Romantic Intimacy. Illness can affect the desire and ability to connect, both romantically and sexually. Couples need to see this as a shared issue, not something that is solely the problem of the sick person. An ongoing conversation about how to keep love alive is vital. Romance doesn’t have to be a trip to Paris, and sex doesn’t have to be intercourse. There are lots of ways to woo and be wooed, and it’s your job (and privilege) as a couple to find what works for you. Slow dance in the hospital with your I.V. pole. Text love notes to each other during the day. Make “Netflix and Chill” an exciting date night. Prioritizing your desire for one another is essential (Gilbert, Ussher, & Perz, 2010).
A Space for Difficult Feelings. We also can give our partners space to talk about their darker feelings. Just as we often feel sad, angry and overwhelmed by our illness, our partners also have these feelings (Courts, Newton, & McNeal, 2005). Can we encourage our partners to talk about those feelings with us? In knowing each other deeply — which includes knowing painful thoughts and emotions — we make our relationship a sanctuary where each person can be seen and loved for who they are.
Givers and Receivers of Care
The word “caregiver” can feel un-romantic, conjuring up images of one person giving and another receiving care. For couples who live with chronic illness, this need not be one-sided. Yes, partners give us care related to our illness, and we receive that care gratefully. But we also give them care. We respect their personhood, encourage their growth, offer them space to be known and loved, and give them the gift of knowing and loving us. During this month of love, I encourage couples living with illness to ask each other, “How can we each give care with love? How can we each receive it with gratitude?”
Courts, N.F., Newton, A.N., McNeal, L.J. (2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37(1), 20-27.
Dalteg, T., Benzein, E., Fridlund, B., & Malm, D. (2011). Cardiac disease and its consequences on the partner relationship: A systematic review. European Journal of Cardiovascular Nursing, 10, 140-149.
Gilbert, E., Ussher, J.M., & Perz, J. (2010). Renegotiating sexuality and intimacy in the context of cancer: The experiences of carers. Arch. Sex. Behav., 39, 998-1009.
Pierce, L.L., Thompson, T.L., Govoni, A.L., & Steiner, V. (2012). Caregivers' incongruence: Emotional strain in caring for persons with stroke. Rehabil. Nurs., 37(5), 258-266.
Rees, J., O'Boyle, C. , & MacDonagh, R. (2001). Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine, 94, 563-566.