The Impact of Chronic Illness on Relationships
"In doing the research for our book, Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, my co-author and I learned from the couples and experts we interviewed that there are discernable opportunities, challenges, and coping strategies that emerge when illness becomes the third partner."
Pat and Chris had a poetic start to their relationship. They noticed each other standing on opposite sides of the subway platform, waiting for trains that would take them in different directions. As they smiled at each other, Pat’s train pulled into the station. Chris feared the opportunity was lost. The train departed, but there was Pat, still standing on the platform, still smiling.
This was the start of a long, loving relationship.
But the poetry turned into a sadder song when, a year later, Chris was diagnosed with kidney disease that left him weak, occasionally requiring hospitalization. Almost everything in their lives changed: diet, sleep, and socializing as illness-related activities moved to the foreground. A partnership of equals became one of patient and caregiver—roles they never imagined they’d need to navigate so soon.
When a serious health condition enters a couple’s world, the condition lives in one person’s body but two lives are dislocated. Two hearts, minds, and spirits are needed to carry the load: diagnoses, lab tests, procedures, specialists, hospitals, medications, waiting, and uncertainty.
In this daunting terrain, the one solid anchor point is the partners’ relationship with each other.
Relationships with a solid foundation of caring and communication have more resources for dealing with illness. Relationships that have been contentious struggle to adapt to the demands of illness. However, one of the hidden powers of illness is that it can propel solid relationships to greater levels of connectedness and can present fractured relationships with opportunities to grow stronger.
In doing the research for our book, Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, my co-author and I learned from the couples and experts we interviewed that there are discernable opportunities, challenges, and coping strategies that emerge when illness becomes the third partner.
Opportunity: Love Grows
Our biggest surprise was how many couples spoke of experiencing a deepened connection and more authentic communication, which they attributed to the transformative power of illness. They said that illness slices through the noise of everyday life and highlights what really matters—love and compassion. The forgotten grocery item, the laundry sitting on top of the washing machine, and the late arrival for dinner all fade under the glaring lights of illness and mortality.
Strategy: Make Time for “Being”
It can be a slippery slope for illness to become not only the third partner, but also the driver in the relationship. Couples can get swept away by the all the demands illness makes—medical care, financial stress, housework, family duties—and wind up in endless cycles of “doing” chores and tasks. This is depleting and isolating.
For the couple to replenish their reserves they need to create cycles of “being”—time to be together without purpose, to remember the bonds that brought them together, to revisit loving memories and create new ones, to have conversations about meaning and connection. Being can also be as simple as walking the dog together, sitting side by side on a park bench, saying thank you for caring, and watching a favorite movie.
Doing begets more doing, and the resulting churn fuels exhaustion. Being repositions partners closer to love and compassion, and that has reverberations that increase connection beyond the moment. Being does not replace doing, but strengthening the partner’s bond through being infuses everything with the vitality of love.
Challenge: Carrying the Load
Like dancers who automatically slide into the groove of a new rhythm, couples living with illness move with unconscious rapidity into the dance of the well partner over-functioning and the ill partner under-functioning. The well partner, in addition to her routine tasks, takes on many of the tasks the ill partner can no longer do. On top of that pile, she may add tasks specific to the illness (wound care, medication tracking, bathing). As the load shifts to the shoulders of the well partner, she feels increasingly exhausted while also feeling that she is never doing enough. The ill partner may feel increasingly isolated, focusing largely on the illness.
While partners may need to shift their loads to accommodate the demands of illness, the weight can be better distributed, and the process for determining who does what can be more deliberate and mutually supportive.
Here is an approach couples can use:
The couple together writes down a list of all the tasks each one does, and all the tasks that still need doing. Then each person writes his or her initials next to the tasks they want to and can do. There will inevitably be some tasks without initials. The couple can then problem solve together to determine how these unclaimed tasks can be done. Family, friends, and community services can be enlisted. Some tasks can be left undone.
Doing this planning together not only leaves the couple with better responsibility clarity, but it can lift some of the burden from the well partner’s shoulders and engage the ill partner in purposeful activity that keeps her tied to the world beyond illness. Partners also find that the resentments that arose from unspoken and unclear expectations around responsibilities diminish.
Challenge: Connection or Collision
What couples don’t realize when illness enters their lives is that they are each experiencing the illness differently. For example, the ill partner experiences illness in her body and may feel untethered as she assimilates a new identity of “person with illness,” along with some limitations and symptoms. She may need privacy to process these changes. The well partner’s world is upended and, in addition to fear, exhaustion, and powerlessness, he feels driven to do something to help. The combination of her need for privacy and his need for action on her behalf is a prescription for collision.
If each continues to make assumptions about the other’s needs based on his or her personal experience of the illness, they are likely to continue to collide rather than connect.
Additionally, the partners are feeling a swirl of emotions, and not all of them seem valid: fear of an uncertain future, helplessness to influence that future, anger at the ill partner for being ill and at the well partner for being well, as well as rage at the medical system for its fallibilities. The partners keep many of these emotions secret for fear that they will do more harm if voiced aloud. Yet these feelings are tenacious, and not expressing them doesn’t make them go away. Keeping them secret creates a gap between the partners at the time they need connection the most.
Strategy: Speaking the Unspeakable
“Speaking the unspeakable” aloud—fears, resentments, anger, sadness, hopelessness, shame, hurtful behaviors—in the presence of deep listening and empathy can help restore the connection that may have become frayed by the corrosive effect of secrets. It can be helpful (and for some couples, necessary) to work with a psychotherapist familiar with illness-related issues.
Here is an approach couples can use to share and listen.
- Couples should pick a time when they will not be interrupted. Together they set the intention of wanting to share what has been reverberating inside for the purpose of growing stronger, together, (not solving a problem-solving, that can happen at another time).
- One partner shares her “unspeakables” with truthfulness and without blame. The other partner listens attentively without interrupting or mentally constructing counter-arguments or solutions to problems.
- When the first partner is finished, the listening partner asks, “Is there anything else?” Sometimes important information emerges at the tail end. Then the listening partner reflects back what she heard and asks if she understood correctly. Then she thanks the partner for sharing his truths and appreciates the courage it took to do so.
- They switch roles, with the same instructions (this can happen at the same or at a different time).
This activity will likely feel uncomfortable, even risky, (and should not be undertaken if there is a risk of violence or abuse). Partners can start by practicing with some lighter “unspeakables” and advance to heavier ones over time. It can seem that nothing tangible happens, even when a lot is accomplished. The secrets that had been causing distance or confusing behaviors are converted into a shared understanding; the partners experience that healing moment of being held and loved while feeling vulnerable; and they learn that speaking the unspeakable does not cause more harm, it repairs and reconnects.
Illness can upset our routines, shake us out of complacency, and remind us of mortality. This disruption, while unnerving, provides couples with the opportunity to sort through the irrelevancies and remember the essentials, and to reconnect with the bedrock of their relationship, where they, hopefully, find love and compassion.
Some couples may discover their bedrock is too toxic to replenish them. But with this clarity, they may be better able to determine their path forward, together or apart. However, many couples’ bedrock is sturdy, and can inspire them to cherish each other and to remember their love in their time of chronic illness.
Want more? Try these 5 daily practices to strengthen your relationship.