Aging Partners Managing Chronic Illness Together: Introducing the Content Collection

Abstract

Prior literature on illness management within intimate relationships demonstrates a variety of benefits from supportive partnership. Indeed, much of the earliest research in this field engaged older adults with and without chronic conditions. However, this pioneering literature gave little consideration to relationships in which multiple partners were coping with chronic illness. By contrast, the majority of published manuscripts presented a “sick partner/well partner” model in which caregiving flowed only in one direction. Yet this idea makes little sense in the context of contemporaneous data on population aging and health as a majority of older adults now live with at least one chronic condition. Scholars still have not delved explicitly into the experiences of the vast population of older relationship partners who are managing chronic conditions simultaneously. We thus welcome Gerontology and Geriatric Medicine readers to this special content collection on Aging Partners Managing Chronic Illness Together.

Growing older brings many changes in our lives, among them dynamic shifts in our health across multiple domains (Young, Frick, & Phelan, 2009). As we age our physical, mental, behavioral, and social health all undergo transitions. Some of these changes may persist across time, whereas others may ebb and flow inconsistently from day to day. Regardless of the specific shifts we experience with our health in different areas, we universally undergo a process of figuring out how to manage these changes (Strine, Chapman, Balluz, Moriarty, & Mokdad, 2008). That process often begins with placing our health experiences into the context of our most important social relationships (Cohen, 2004). For many people, intimate partnerships rank foremost among these connections.

A large and diverse literature highlights the importance of intimate partnerships in health promotion and maintenance, both generally with respect to the full adult life course and specifically with respect to later portions of same. The term “intimate partnerships” describes a broad category of lasting, intense relationships between two or more people. These may include cohabitation and marriage but are not necessarily limited to these instrumental structures (Kiecolt-Glaser, Gouin, & Hantsoo, 2010). Overall, prior research suggests that the quality of intimate partnerships—and especially social support within those relationships—impacts strongly upon people’s health as they grow older (Robles, Kiecolt-Glaser, 2003). Additional research indicates that when a relationship partner experiences chronic illness, having a supportive environment within their partnership can protect health in a variety of ways (Berg & Upchurch, 2007). Some of this buffering against the adverse consequences of chronic disease occurs because supportive partnerships can facilitate effective illness management—a process of adjusting to and coping with changes in health introduced by persistent conditions (Charmaz, 2000).

Prior literature on illness management within intimate relationships demonstrates a variety of benefits from supportive partnership. Indeed, much of the earliest research in this field engaged older adults with and without chronic conditions. However, this pioneering literature gave little consideration to relationships in which multiple partners were coping with chronic illness (Nowakowski & Sumerau, 2017). By contrast, the majority of published manuscripts (e.g., Manne & Zautra, 1990) presented a “sick partner/well partner” model in which caregiving flowed only in one direction. This discourse suggested that even in cases where multiple partners within a relationship lived with chronic illness, the overwhelming share of caregiving was still provided by one person (Kuyper & Wester, 1998).

Yet this idea makes little sense in the context of contemporaneous data on population aging and health. During the time frame when many of these earlier pieces were published, a majority of older adults lived with at least one chronic condition (Phelan, Anderson, Lacroix, & Larson, 2004). For example, in the early 2000s 82% or more of Medicare beneficiaries aged 65+ in the United States lived with one or more diagnosed chronic diseases, and more than 75% of those individuals had multiple persistent conditions (Wolff, Starfield, & Anderson, 2002). Nearly two decades later, the fields of social gerontology and illness management still have not delved explicitly into the experiences of the vast population of older relationship partners who are managing chronic conditions simultaneously (Nowakowski & Sumerau, 2017).

We thus welcome Gerontology and Geriatric Medicine readers to this special content collection on Aging Partners Managing Chronic Illness Together. It continues the work we began in 2017 with our own article highlighting some of these gaps in the literature on intimate relationships and health across the life course. In this article, we introduced the concept of collaborative illness management as a phenomenon likely occurring in many partnerships, defining this construct as one of purposive activity in which intimate partners with chronic conditions deliberately and synergistically support one another in managing health. The limited prior research we found even acknowledging the possibility of such activity focused exclusively on heterosexual relationships between cisgender and cissex people and almost entirely on people of White heritage and various European ethnicities. We thus called for intersectional exploration of how intimate partners collaborate in managing their respective health conditions as they age. With this content collection, we seek to answer that call by compiling innovative work by interdisciplinary scholars of health and aging. This special collection will establish a formal literature on collaborative illness management in later life. In doing so, it will promote health equity by amplifying diverse voices from both research inquiry and patient experience.

A combination of professional history and personal experience inspired us to curate this content collection. The first editor, Dr. Alexandra “Xan” Nowakowski, is a medical sociologist and public health program evaluator living with cystic fibrosis. The second editor, Dr. J. Sumerau, is a social psychologist and liberal arts educator living with chronic pain. Both of us have posttraumatic stress disorder stemming from past abuse. We have supported one another in managing our chronic conditions since becoming a couple in 2011 and were married in 2016. The support we have given one another has taken many forms, including but not limited to research collaboration. For example, we noted early on that we shared a passion for creative writing, leading J to publish social fiction novels on trauma survivorship and Xan to publish poems in journals about coping with physical illness. We also quickly discovered that we shared an innate curiosity about the nature of love and how best to nurture it as we age.

Indeed, one of the key experiences that inspired us to propose this special content collection was our frustration with the limitations of terminology and public perceptions concerning openness in relationships, both in general and among older adults specifically. The existing biases in academic literature toward heterosexual, cissex/cisgender, and monogamous individuals are amplified in the limited research published to date on older adult sexuality (Davis, 2012). We have found this to be especially true for research on sexuality among older adults living with chronic conditions (Nowakowski & Sumerau, 2017). Our journey so far as a queer, open, and gender nonbinary couple living with multiple chronic conditions has thus inspired us to champion inclusive research on partners’ collaborative experiences of illness management as they grow older together. We hope that you will join us in this effort!