Rare Bird Books recently published your book, Love in the Time of Chronic Illness: How to Fight the Sickness―Not Each Other. What led you to write this book?
My co-author, Roanne Weisman, and I wrote Love in the Time of Chronic Illness because we were both the ill partners in our relationships, and we were both stunned by how deeply our conditions affected our relationships with our partners and how important that relationship was to our eventual recovery. There were no resources out there to help us understand the impact of illness on our relationship or what we could do to grow stronger, together.
So, we interviewed many couples living with illness and experts from a range of areas and wrote the book we wished we’d had during our illness experiences. We want Love in the Time of Chronic Illness to serve as a medium for couples living with illness to learn from each other and hear the counsel of experts. While there are many personal illness memoirs and websites that offer support to the caregiver, there are still very few resources that address the impact of illness on the couple relationship. In fact, we have seen over the years that what we learned about couples and illness also applies to other forms of patient/family caregiver partners.
As part of this project, you interviewed many couples about their own experiences with navigating the medical and relationship mazes in the midst of unforeseen illness or injury. Can you give us an example of a couple’s story?
When illness becomes the third partner in a couple’s relationship, their world tends to turn inward. They can wind up feeling isolated from their usual supports and uncertain about how to navigate in their new landscape. While each couple’s story is uniquely theirs, when they learn of other couples’ experiences with illness, they not only feel less alone, they learn valuable approaches for coping and building resiliency.
The story that follows is unique to the couple that lived it, but also offers perspectives and possibilities that other couples could benefit from. In this story, we see how illness can heighten relationship friction that used to be manageable; and we see how valuable it is to use this heightened awareness to learn new approaches for addressing differences and strengthening the relationship.
Clare and Bruce had each left a long-term unhappy marriage when they met. They bonded quickly over their shared grievances and felt that they had found someone who, having suffered relationship wounds, would never inflict them. They dated for a year, focusing on how different their peaceful relationship was from their past marriages, while ignoring the warning signs that pointed to friction.
They moved in together. Their prevailing pattern was for Clare to boldly make all the big decisions and for Bruce to comfortably acquiesce. This suited both their temperaments. There were a few ripples when Clare felt overloaded with responsibility and Bruce felt ignored; but they sailed along smoothly, until Clare was diagnosed with uterine cancer and had major surgery.
Clare was overwhelmed by the implications of her condition, by the pain of surgery, and by a foreign sensation of helplessness and uncertainty, and for the first time, wanted help. In the face of her diagnosis and suffering, Bruce became even more passive, which was where he typically retreated when he felt anxiety. Clare could no longer lead and direct Bruce, and Bruce did not know how to take charge, so their differences became an unavoidable problem. Clare yelled, cried, railed, and yearned for attention and comfort. Bruce withdrew even more. They were trapped in a self- and other-defeating dynamic and neither had the tools to disentangle from this pattern. Eventually, Clare told Bruce to leave, and he complied.
They did still love each other and decided to get help from a counselor. The biggest lessons they learned in counseling were to speak their truth without denigrating the other and to listen with compassion. Clare learned first to accept her own needs and to tell Bruce, with kindness, when she wanted him to hold her, to bring her a cup of tea, or to go to doctors’ appointments with her. Bruce learned that his avoidance was actually a silent expression of his own frustrations and that when he expressed his needs more directly, he felt more connected with himself and with Clare. He learned not only how to be more accepting of Clare’s needs, but to express his own.
It took a while for these learnings to sink in and to affect their behavior, but over time Clare became more inviting, and Bruce grew more quietly assertive. Bruce moved back in, and as Clare slowly recovered, they found they truly enjoyed their new ways of connecting.
What are the biggest challenges couples must face when dealing with a health crisis?
In our interviews for Love in the Time of Chronic Illness we learned of several challenges couples face when dealing with a serious health condition. Here are two of them.
The one that often hits first is what we call “Carrying the Load.” Serious illness can turn a partnership of equals into one of patient and caregiver. For some, this happens suddenly if one partner suffers a severe stroke or a traumatic accident. For others, load changes may happen over time as the condition shifts. It’s not uncommon for the well partner to over function and take on all the daily chores, do the bulk of the child rearing, handle finances and insurance issues, and still do a day job. The ill partner can wind up increasingly isolated, focusing largely on the impact of the health condition. If this load imbalance is unrecognized and unaddressed, the couple can wind up sacrificing their intimacy to the demands of the illness.
Another big challenge is what we call “Connection or Collision.” The patient and the caregiver experience the health condition differently and react to the condition differently. The patient experiences it from the inside-out, while the caregiver experiences it from the outside-in. The patient may register changes that are invisible to the caregiver. The caregiver may notice behaviors that the patient has not yet recognized. The patient may need quiet time to process, while the caregiver may need conversation to address what s/he perceives as a problem. And they may report different data to the doctor. If they don’t recognize these differences in perceptions, they are likely to collide instead of connect.
Is there a silver lining? Are there any opportunities for deepening the relationship when confronting such serious challenges?
There is a momentous silver lining. In researching Love in the Time of Chronic Illness, we were surprised by how frequently we heard couples speak about a unique upside of illness. They spoke of the power of illness to break through the routines and noise of everyday life and illuminate what truly matters, which is love and compassion. Many partners noted that they achieved levels of connectedness, intimacy, and authentic communication that they believe would not have been possible had it not been for the transformative impact of illness. One expert we interviewed said, “Illness can be the jolt that removes the dullness from life and unveils the potential.”
What are your top pieces of advice when it comes to navigating a health crisis as a couple?
Illness introduces a portfolio of new activities into the life of a couple. In addition to rebalancing the customary chore load, new chores such as researching the condition, making doctor appointments, getting to appointments, picking up medications, dealing with insurance and finances, making tough health decisions, even hands-on care are added. The couple may feel so swamped by how much they have to do that they forget to make time to just be. For the couple to replenish their reserves, they need to create space to sit together, to hold hands, to share their hopes and worries, to comfort each other, to enjoy what they can, to remember love. Being doesn’t diminish the doing, but it does infuse resilience into the relationship so that the couple can address challenges with greater emotional fortitude.
I would also advise couples to stay as close to normal as they possibly can: to travel, to socialize, to go to work, to play, to eat. One couple we spoke to—the husband had end stage cancer—set up a bed near the kitchen so that as he grew weaker he could continue to hear, see, smell, and feel part of family life.
The people we interviewed for Love in the Time of Chronic Illness had wonderful advice to offer. Here are a few words of wisdom from them:
- “Your life may not be the same. But you can have a good life, even a better life.”
- “Shift your focus to what really matters in your relationship.”
- “There’s no such thing as false hope. There’s only hope.”
- ”Don’t beat yourself up over the things you can’t do.”
- “Feel regret without making it guilt.”
- “You can have wholeness without recovery.”
Besides your book, what resources do you recommend?
There are actually few resources that address the impact of illness on the relationship between the patient and the family caregiver.
Here is a one-hour video of a talk I gave to a patient/caregiver group at Stanford’s Cancer Support Center.
Here is a link to my blog dedicated to helping couples living with illness.
Here is a link to a wonderful organization that helps patients and caregivers form and sustain their caregiving network:
Connect with Barbara Kivowitz:
My book: Love in the Time of Chronic Illness: How to Fight the Sickness―Not Each Other
Barbara Kivowitz, MSW is a psychotherapist and health care consultant and has worked with many couples facing illness. She speaks frequently at patient/caregiver conferences and has developed programs for health care professionals. She has authored articles on couples and illness for popular and clinical publications and has a widely read blog on this topic.