The Cruel Radiance of What Is: Helping Couples Live With Chronic Illness

KAETHE WEINGARTEN*

The threat of no longer being the person one wants to be hovers over each ill person and plays out relationally. The dynamic interplay of this experience of self-loss and other-loss (Roos, 2002; Weingarten, 2012) has a significant impact on couples, both of whom may come to have both experiences. In this article, I focus on the couples experience of self- and other-loss in the context of chronic illness, in which one persons experience flows into and informs the others. In particular, I describe how asymmetric acknowledgment of self-loss and other-loss adds to the misery of couples who are already challenged by poor health. Physical pain also makes dealing with self- and other-loss harder. Therapists can serve couples better if they take a fully collaborative stance; appreciate the dilemmas of witnessing; help couples distinguish new trauma from retraumatization and fear; work with the weavers dilemma and the boatmans plight (Weingarten, 2012); and are comfortable with discussion of end of life issues. Keywords: Chronic physical illness; Couples; Self-loss; Other-loss; Relationship Fam Proc 52:83101, 2013

ne way of understanding what is so challenging, draining, confusing, and distressing about living with someone with a chronic illness is that there are so many factors that can create slippage between who we think we are and how the other person experiences us. For couples, who am I is always also who are you? In couples with a chronically ill member, what is being negotiated is simultaneously who is this ill person now and in the future as well as how competent and compassionate is the partner, how have they been and how are they going to be? This dilemma may also pertain to couples dealing with disability issues, but is beyond the scope of this article. Although we live in singular bodies, illness makes visible that we become intelligible through continuous processes of social negotiation. Couples are a particularly intense and intimate arena of social negotiation. As everyone knows, some negotiations are more in alignment than others with who we think we are and who we want to be. In 2010, over 144 million Americans had a chronic illness, over half of whom were in middle age or older (Wu & Green, 2000). While end of life will certainly face many of these couples, there is very little literature to guide our work with them (McLean & Jones, 2007). This study concerns itself with couples in medias res, as it were, contending not with the furthest shores of illness but the expansive watery depths of the murky present. Anatole Broyard (1993) elegantly expresses one half of the dilemma that is at the heart of this article. In his moving collection of essays, Intoxicated by My Illness, he writes that since illness diminishes the self, how does one keep from falling out of love with oneself

*Director, The Witnessing Project, Newton, MA.

Correspondence concerning this article should be addressed to Kaethe Weingarten, Ph.D., Director, The Witnessing Project, 82 Homer St., Newton, MA 02459. E-mail: kaethew@gmail.com 83

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(p. 25)? This threat hovers over each ill person and plays out relationally, the other half of the dilemma.

REVIEW OF THE LITERATURE Family Research

In the last 20 years, theory and research have extended ideas about stress and coping from a primary focus on individual processes to a focus on interpersonal ones. Dyadic coping refers to how one person reacts to the stress signals of another. In mutual or common dyadic coping, couples think of themselves in terms of a we, with both people seeing themselves as responsible for maintaining the relationship and managing their shared stress. As family therapists would expect, this approach is associated with greater well-being for the relationship despite the strains of coping with illness (Acitelli & Badr, 2005; Skerrett, 2003). There are many factors that make up the experience of feeling like one is in a couple in which the we approach predominates. Researchers have studied communication, values, beliefs, and coping styles among other factors. A few examples include congruence of fit between spouses coping styles (Revenson, Abra do-Lanza, Majerovitz, & Jordan, 2005), relationship awareness, defined as viewing oneself as part of a couple and talking about the relationship (Badr & Acitelli, 2005), relationship maintenance (Badr & Carmack Taylor, 2008), and patient/partner disclosure (Manne et al., 2004). When couples experience the we, marital quality is rated as more satisfactory. Marital quality has an impact on health for both the ill person and the well partner across a wide number of common chronic conditions (Martire, Schulz, Helgeson, Small, & Saghafi, 2010; Schmaling & Sher, 2000).1 Studies repeatedly show that people have poorer physical and psychological outcomes when they are in distressed marriages (Coyne, Rohrbaugh, Shoham, Sonnega, & Nicklas, 2001; Groth, Fehm-Wolfsdorf, & Hahlweg, 2000; Yang & Schuler, 2009). Of interest, studies show that marital functioning may be more crucial to the survival of women (Coyne et al., 2001). These studies assume heterosexual marriages. However, it is by no means established what the mechanisms are by which marital quality impacts outcomes. Tracking alongside this lack of certainty, a comprehensive review of randomized clinical trials of couple and family interventions found that while there was potential for family interventions to reduce patient and caregiver distress, to improve patient functioning through greater adherence to medical regimens, and to strengthen family and couple relationships, the mechanisms by which change occurs and the circumstances most likely to be conducive to positive outcomes were unclear (Shields, Finley, Chawla, & Meadors, 2012, p. 273). Perceived support is a likely candidate for a factor in marriage that has an impact on marital quality. Partners of people with chronic illness are called upon to offer instrumental as well as emotional support. While positive support decreases stress, negative interactions decrease patients ability to cope (Mohr et al., 2003). Another factor, supportive communication, is associated with better physical outcomes in the chronically ill and negative communication with poorer outcomes (Fekete, Stephens, Mickelson, & Druley, 2007). However, studies show that over time partners get worn out and it is precisely the kinds of communications that are problematic for well-being that increase: critical and controlling ones
1 Associations between marital quality and health are a subset of the broader class of findings that have established the relationship between survival and social relationships. By some estimates, individuals with adequate social relationships have a 50% greater likelihood of surviving that those with poor or insufficient relationships (Holt-Lunstad, Smith, & Layton, 2010).

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(Martire et al., 2010; Walker & Dickson, 2004). Furthermore, there are significant gender differences. Women as patients and partners report more distress (Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008), consistent, perhaps, with a willingness to self-report more vulnerability. Anyone working with couples needs to think carefully about the impact of gender on the ways couples manage illness. (Likewise, therapists need to consider cultural factors, a comprehensive review of which can be found in Gurung [2010].) In a meta-analysis and critical review of gender and role in heterosexual couples distress in coping with cancer, researchers found that women experienced more distress regardless of whether they were the patient or the partner (Hagedoorn et al., 2008). It will be important to extend these findings to other illnesses and to same-sex couples. Pennebaker and colleagues have undertaken a long research program establishing a relationship between better physical health and disclosure of difficult, even traumatic, experience by putting this into language (Pennebaker, 1995; Smyth, Hockemeyer, Heron, Wonderlich, & Pennebaker, 2008). In the area of couple studies, taking an interactional perspective, Reis and Shaver proposed that disclosure of information, thoughts, and feelings followed by the perception of partner responsiveness produces the experience of intimacy2 (Laurenceau, Barrett, & Pietromonaco, 1998; Reis & Shaver, 1988). In one study with breast cancer patients, Manne and colleagues tested the Reis and Shaver model and found that partner self-disclosure was more important to patients as an indicator of intimacy than their own disclosure (Manne et al., 2004). Since the patients were all women, it is impossible to disentangle gender effects from patient status, but one might consider the possibility that patients are already disclosing a great deal and it is the mutuality of disclosure that produces the feeling of intimacy in the context of a serious illness. This would fit with other work that suggests that mutuality is an important component of perceived support (Cutrona, 1996; Cutrona, Russell, & Gardner, 2005). However, mutuality is difficult for many couples to achieve. Empirical and research studies have homed in on a paradox: while couples do better when both share feelings, partners of people living with chronic illness may inhibit themselves or even keep secrets under the mistaken idea that they are protecting their loved one (Badr, Carmack, Kashy, Cristofanilli, & Revenson, 2010; Coyne & Smith, 1991; Penn, 2001; Skerrett, 2003).

Biographical Disruption
Much has been written about chronic illness as a disruption to an individuals biographical flow, focusing on the difficulties of meaning making in the context of illness (Bury, 1982). Work by Reeve and associates (2010) emphasizes embodied experience and emotion as variables that assist in the maintenance of biographical flow, suggesting that the emphasis on meaning making may come from theory and not clinical practice. Implicit within both accounts is the idea that it is an individuals responsibility to maintain a coherent self-narrative. Both accounts make narrative continuity an individual not an interpersonal experience and both accounts assume that a coherent self-narrative is desirable. An emphasis on the salutary effects of a coherent narrative is widely accepted (Antonovsky, 1979; McAdams, 2006), even in the context of chronic illness (Fiese & Wamboldt, 2003). Studies are few that explore the interpersonal experience of one persons ability to maintain or not maintain biographical flow and narrative coherence, which is one major factor at stake in negotiating the couple relationship as chronic illness transforms both peoples lives. We know very little as to whether it is desirable for partners to help each
2 In my own work, I have preferred to focus on the co-creation or sharing of meaning more broadly than just verbalizing as a path toward intimacy (Weingarten, 1991).

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other maintain narrative coherence, to act as if there is narrative coherence when life feels substantially altered, to help the partner work toward narrative coherence or to help the partner accept incoherence. These are all important considerations for which clinical case reports and empirical work have contributions to make.

Family Therapists Contributions

Family therapists have made impressive contributions to our understanding of the impact of illness on couples and families. Books by Cole and Reiss (1993), Griffith and Elliott (1994), McDaniel, Hepworth, and Doherty (1992, 1997), Rolland (1994), and Wright, Watson, and Bell (1996) continue to provide rich maps to orient our thinking about the impact of illness on families, therapists, and the work they do together. More recent books by Atwood and Gallo (2010), Wright and Bell (2009), and Schmaling and Sher (2000) build on and extend this rich tradition. As Rolland (1987) has pointed out, illness unfolds along a dimension of time, within a particular relational and social context, with parameters set by the characteristics of the illness itselfdoes it have low or high cultural resonance, for exampleand demographic features of each person, such as age, gender, and place of residence. In his panoramic overview of the impact of chronic illness on couples, Rolland (1994) identifies skews that can develop as couples add the management of a chronic illness into their ongoing lives. The skews he identifies create disorders of power and control, distort intimacy, and make it difficult to put the illness in its place. Preventing skews before they arise is ideal. When not possible, Rolland believes, identifying and normalizing these skews, then developing ways of coping with them, is the best approach. Young and Rosenthal (1999), working from Rollands conceptual map, studied the daily lives of four couples dealing with chronic illness for 1 week using Experience Sampling Method. Randomly paging the couple seven to ten times a day yielded snapshots of mood and activity. The graphs, with their zigzagging lines across pages labeled at the top negative, neutral, and positive mood, give vivid visual testimony to the range of emotion that coping with illness provokes. This kind of fine-grain research dovetails with what clinicians working with couples observe in their offices. Skerretts (2003) intervention approach for couples dealing with physical illness aims to strengthen the couples sense of the we. By helping couples practice dialogue skills, she helps each of them tell his or her illness story (Frank, 1998), enhancing their sense of intimate connection with each other through acknowledgingnot changingeach persons experience. In writing about families coping with a family member with mild traumatic brain injury, Landau and Hissett (2008) write that there is clear evidence that the symptoms of chronic illness or pain change the way people relate to themselves and those closest to them. While this may be a truism, it is also accurate at a profoundly existential level. Boss and Couden (2002) write about this phenomenon as ambiguous loss, stating that the most stressful losses are those that are ambiguous (p. 1352). In their important study, they note that the ambiguity of the loss of a family member as they once were may be more responsible for family dysfunction than the symptoms of the physical illness or condition itself. Applying a familystress perspective, they write that coping requires understanding that ambiguity may block. Thus, families are hampered from adapting to the changes brought on by chronic physical illness precisely because of the attendant ambiguity of predicting an illnesss course. In a previous article, Sorrow (Weingarten, 2012), I explored the experience of self-loss from the patients perspective when it is not experienced as ambiguousalthough it may bebut as clear and definitive. Using the construct chronic sorrow and focusing on
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self-loss as the central experience of that normal, non-pathological state of pervasive, continuing, periodic and resurgent sadness related to the ongoing losses associated with illness and disability (Weingarten, 2012, based on Roos, 2002), I applied the concept of self-loss to myself and four patients of mine, two of whom also make an appearance in this article. Whereas in the Sorrow article I focused on the patients experience, here I focus on the couples experience of self- and other-loss in the context of chronic physical illness, what I call the the fallen figure eight, conjuring that symbol to connote one persons experience flowing into and informing the others. Boss and Couden (2002) highlight ambiguity; I am highlighting asymmetric acknowledgment of loss as problematic to relationship, prompting conflict in couples.

SELF-LOSS, OTHER-LOSS
The stress of living with, and living with someone who is besieged by, the physical, psychological, and logistical demands and discomforts of chronic illness is a draining experience. It can shatter expectations and dreams of self and other. Self experience derives from a socially constructed process. The fact that (most) chronically ill people negotiate their views of self with fewer and fewer people, and partners views of the ill person and themselves focus on narrower and narrower domains, creates the potential for a distorting hall of mirrors. Self-loss is an excruciating experience. It is not just, as one client has expressed it, that one lives a pea-sized life, but also that one drags ones partner into this diminishment too. While some couples find themselves more loving in these circumstances, many others experience terrible strain as the qualities that made each other lovable fade and falter (Eriksson & Svedlund, 2006). At stake is maintaining a sense of oneself as having value even as one can do less and less of what one has always valued. The apprehension of limitsthat one is not who one wasis as painful as any physical pain. It is suffering. Kahn and Steeves (1986) describe the experience of suffering as occurring not necessarily when one feels intense pain but instead when the meaning of pain is perceived as a threat to the self. Partners of people with chronic illness have a corresponding experience of self-loss, their own part of the fallen figure eight. They not only perceive the diminishment of their loved ones, and must cope with feelings of loss of the beloved other, but they too endure self-loss. There are distinct familial and cultural expectations of a loyal, compassionate partner; a few do, most do not, meet their internalized ideals of performance. Thus, partners must cope with their own sense of failure. Furthermore, as the person with chronic illness shrinks his or her life, the partners life also becomes more circumscribed. Desired outlets for expressing oneself decrease, creating more loss. If a partner refuses to accede to these restrictions, it often becomes an emotion-laden topic that loops between the couple. To experience self-loss one must have an implicit epistemology of the self, as it were. To be sensitive to diminishment, one must have a firm sense of who one is and what has been lost. People who are ill often become vigilant about statements that reflect back to them a view of themselves they find unbearable. A well-meaning partner may block a previously strong partner from lifting a suitcase, infuriating the person with the chronic condition. Charmaz (1983), in her important work on the self and chronic illness, calls this a sensitivity to discreditation. There are moving accounts of caretaker partners living with people with diminished cognitive capacity in both the memoir literature (Ackerman, 2011; Hoblitzelle, 2008) and the professional literature (Landau & Hissett, 2008). But self- and other-loss occur in the context of illnesses and conditions that do not primarily alter cognition. I have seen
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couples in which the person who is ill denies the extent to which he or she is altered and it is the partner who explicitly struggles with self- and other-loss as well as the opposite, when it is the partner who cannot accept what the ill person so painfully feels as self-loss. Asymmetric acknowledgment of self- and other-loss can be an added layer of misery for couples coping with chronic physical illness.

Asymmetric Acceptance of Self-/Other-Loss

Isabelle was in denial about the impact of her chronic illness on her husband, Thomas. They came to see me on the recommendation of Isabelles individual therapist, who feared that the marriage was on shaky ground. Both arrived slinging backpacks off their shoulders, dressed in jeans and work boots. The couple was in their late twenties and had been married for 6 years. Isabelle had developed an atypical seizure disorder soon after they were married. Despite a valiant effort on her part, Isabelle had been unable to sustain either studying or employment and she was financially dependent on Thomass support. Thomas had had his own IT business but the demands of caring for Isabelle as well as the weak economy had led him to abandon it and hire himself out as a technician on a per diem basis. Consequently, their income had become smaller and less predictable. In one early session the couples dilemma was made starkly visible. Isabelle came in looking sour and glum. She started off by saying she needed to confront Thomas. I cannot do this anymore, she said, while looking daggers at Thomas. I wont be put in the position of dealing with creditors and juggling bills anymore. What are you doing? What are you not doing, I should say?3 Thomas looked down and away from us both. There was a long pause while Isabelle audibly fumed. Then Thomas murmured, I am doing the best that I can. How can you say that, Isabelle went on, when you dont use your networks to get work, you dont follow up on jobs you hear about, you dont do anything as far as I can see to bring in the money we need? Are you going to let us get thrown out of our apartment, have no heat, eat from a food pantry? Indeed, Thomas had become paralyzed by worry and anxiety about Isabelle. He feared leaving her alone. When he was away from her, he feared he would get a call from an EMT informing him that he needed to come home or to the emergency room because Isabelle had injured herself during a seizure. Thomas was depressed about their situation. Although loving and loyal, he hated the life they currently lived and he was in constant fear of another seizure. In addition, Isabelle was so defensive about the impact of her condition on their lives that she was unable to talk with Thomas about it. She blamed Thomas for their predicament, as if his failure to find satisfactory employment was a consequence of personal dereliction. Thomas feared that Isabelle was so fragile that a frank conversation would shatter her. They were locked into dueling ineffective self- and other-protective strategies, both of which compromised the couples relationship. Isabelle was unwilling and unable to face the implications of self-loss for the couple and Thomas was terrified of making her do so. Although her castigations hurt him, he felt it was his duty to endure them rather than connect the dots for Isabelle that her condition was the reason he was not fully employed. Isabelle and Thomas struggled with the interconnected ways that self- and other-loss can play out. Whereas Isabelle could bemoan the ways her life was restricted, she refused to acknowledge how her condition affected Thomas or their relationship. Thomas believed he had to shield Isabelle from this awareness.
3 Spoken text is taken from session notes and is a recreation of dialogue. Identifying information has been altered for all of the clinical material.

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Coffey (2004) writes about how self- and other-loss played out in her first marriage. Her husband was diagnosed with ALS in 1985 at age 42. Fourteen months later, he went on a ventilator and was cared for in their home. She writes, From the beginning of Rons illness I was acutely aware of the changes in Ron and the changes in our relationship. In order to feel close to Ron, I needed to be able to talk to him about this part of my experience. Ron often focused on what was the same, especially his internal thoughts and feelings, and he wanted me to pay attention to how we could still be the same with each other. These different perceptions and priorities often stood between us (p. 51). Unlike Isabelle, Ron was not in denial about the impact of his losses but his ability to sustain a sense of continuity of self interfered, at times, with his wifes need to share her experience of other-loss. His focusing on what was the same about him blocked an intimate connection around what they both could no longer enjoy together. Psychotherapist Judy Rathbone shared with me her experience of self- and other-loss in relation to her husbands becoming increasingly disabled from ALS. Here is yet another variation on the theme of interconnected self- and other-loss. In some parts of her reflections she notes that her husband, Jim, was more able than she to tolerate the losses he lived with and it was she whose speed of acceptance was delayed. She writes: I had gone from being able to share everything with Jim to having to restrain myself, always trying to judge whether expressing my feelings would undermine him and add to his sense of burden or forge a connection. He was ahead of me as the changes were happening in his body. I must have seemed like I was dragging my feet at timesnot thinking about it enough not being on the same page. Eventually we held committee meetings as a way of trying to plan ahead so Jim wasnt left with all the thinking. In truth I wanted to be a team with him all the way and also I didnt want to think about ithis body didnt give him the choice. Of note, for Rathbone and her husband the asymmetry was not a manifestation of a power struggle between them, but rather a representation of the different ways the ALS positioned them. They were able to address the asymmetry and maintain their desired collaborative stance, that sense of we.

Self-Loss/Other-Loss and Pain

Connie (see Weingarten, 2012) is keenly aware of self-loss. It is she who laments having a pea-sized life. A vivacious, intense, curious woman before she had to go out on disability in her late forties due to a congenital heart condition, she had piloted herself from a classroom for mentally disabled youngsters to a top executive position. A lifelong goal of Connies has been to be a mother. Ten years ago, she and her wife, Alice, adopted a daughter, who has developed beautifully in their care despite having arrived with some significant developmental delays. Unfortunately, Connie has had to endure a number of frightening medical crises in the last few years, requiring hospitalizations for varying lengths of time. Although Connie and Alice have turned themselves inside out to support their daughter during these times, inevitably the external resources and the childs internal ones have been insufficient to adequately contain the intensity of her reaction to Connies situation. Thus, their daughters suffering becomes part of what the couple suffers. As one would expect, there is a parenting dimension to the couples self-loss/other-loss dynamic. First, both women are overwhelmed by the logistical demands of their lives when the pragmatics of medical crises occur. Second, in a household in which social networks have already shrunk by attrition, the support resources are fewer. Third, parenting decisions about limit-setting versus empathic acceptance, always a moving target anyway, become exceedingly confusing when neither parent is a reliable evaluator.
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Finally, Connie is in pain; Alice finds it difficult to tell whether Connies parenting is coming out of her usual thoughtful consideration of a multitude of situational variables or is an expression of her depleted reserves. Alice sometimes intervenes in ways that turn out to be problematic for all of them. If a child can turn a couples dyadic dynamics into a complicated triad at the best of times, chronic pain adds further complexities. Coping with chronic pain has been described as repeatedly switching between pain and other demands in the environment (Eccleston & Crombez, 1999, p. 363), a challenging proposition in and of itself. But pain holds sway in other crucial ways by its intrinsic ability to change self (Aldrich & Eccleston, 2000, p. 1640). It is fundamentally threatening to the self and others as it tends to make people fold in on themselves almost as a form of social implosion (Aldrich & Eccleston, 2000, p. 1640). Even ill, Connie is unable to retreat to her bedroom and no longer parent their child; Alice has evening meetings and even when Alice is home, parenting responsibilities still fall on Connie. Their daughter, meanwhile, acts up, challenging both parents, but especially Connie. With her patience thinned, Connie can get too angry even to her own ears. However, it does not help if Alice anticipates that this will happen and either criticizes Connie or sides with their daughter in what looks like protection from Connie. Connie experiences this as intolerably discrediting while Alice experiences herself in an empathic bind between her wife and daughter (see Dale & Altschuler, 1999). The intertwined dynamics of self- and other-loss play out in a myriad of ways as unique as each couple. What is common to all is that the dynamic interjects a shared sorrow into the relationship. The awareness of this sorrow may be acknowledged or not, separately or together. While sharing it together may reduce the felt sense of isolation and loneliness so common to couples struggling with chronic illness, it hardly compensates for the sorrow itself. Considering the numbers of people living with chronic illness, it is clear that only a small percentage of them turn to therapists. But those who do, hopefully, find comfort, understanding, and a way forward.

A CLINICAL APPROACH TO WORKING WITH COUPLES DEALING WITH CHRONIC PHYSICAL ILLNESS AND SELF- AND OTHER-LOSS General Orientation to Couples Dealing with Chronic Physical Illness
Working with people with chronic physical illness is demanding and draining work. To work effectively with the relational dynamics of self- and other-loss, there are first some general foundational clinical practices that can be of use. Without these in place, the work that is targeted specifically to self- and other-loss is likely to be difficult for couples to integrate into their understanding of self and other. Withness A key foundational practice is what others have called withness, by which they mean a way of being with clients that facilitates collaborative relationship and dialogical conversations that inspire new ways of thinking and acting (Anderson, 2012; Hoffman, 2007; Shotter, 2012). Anderson is clear that each person who applies withness does so idiosyncratically; there is no one size fits all. I suspect that the hallmark feature of my way of manifesting withness is that I place myself alongside people: I am with them, and my clients tell me that they feel this. My way covers a lot of territory. As I wrote in the essay Sorrow (Weingarten, 2012), I may need to be a container, a mirror, a sounding board, a researcher, an educator, an advocate, a rest stop, a sidekick, and a comic in addition to being a conversational partner.
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FIGURE 1. Partner Witnessing Positions.

Perhaps the essential point is that when working with the chronically ill, one has to practice with considerable flexibility, comfortable with a kind of slalom movement between conversation that encourages self-reflection and conversation that accomplishes tasks.4 It is important, for instance, to know when to unpack issues and when to encourage advocacy. If one has started seeing a couple, the clinical decisions will include whether there are times it makes sense to see either person alone. The reverse, adding a partner to work that started with one individual, is a more delicate matter, but I have done it many times. Individuals seem to be able to share the relationship with me when they clearly know that I am not shifting alliances but rather maintaining my alliance with the persons objectives and we are working together to create the conversational context within which these goals are likely to be met. During medical crises, Alice has attended Connies sessions and we function as a team to address medical, practical, and existential concerns. Witnessing violence and violation Much of my work has centered on the impact of witnessing violence and violation and witnessing in the context of medical illness (Weingarten, 2003; Weingarten & Worthen, 1997). As I have demonstrated in previous work, there is not just one witness position but (at least) four. Like people in occupational categories who are over-exposed to violence and violation, for example, police or health care professionals, couples dealing with chronic illness are over-exposed to violence and violation. In some instances, the violations occur in the context of managing a flawed health care system and some violations are much more intimate, and therefore more painful, that is, those that occur between the couple. Witnessing a loved one struggle with self-loss, truly taking in the magnitude of suffering, can be excruciating and people handle this in (at least) four different ways. If a partner uses denial and avoidance, seemingly feeling nothing and withdrawing to manage that which is overwhelming, the partner is enacting an unaware and disempowered position [see Figure 1, Square 3]. Alternatively, a partner can stay fully aware of the
4

For an excellent overview of collaborative therapy with couples see Vasquez (2011).

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persons situation but feel overwhelmed by it, leading to fear, despondency, helplessness, loneliness, and demoralization. While empathically in touch with the person, the partner cannot mobilize an effective response [see Square 4]. By contrast, a partner may protect him- or herself by emotionally distancing, not allowing the impact of the persons situation to come into focus, yet give advice or make suggestions, thus behaving in ways that are misguided, clumsy, intrusive, and likely hurtful [see Square 2]. At the very least this partners behavior will be experienced as unsupportive when support is so very necessary. The only witness position that works for couples is if the partner is able to stay aware of the persons experience and act in ways that are attuned, aligned, and useful [see Square 1]. Witness positions are not static or stable. In one phase of an illness, a partner may feel unable to cope; in another quite able. In one phase of an illness, a partner may feel compassion; in another, nothing but frustration. The movement across these different witness positions is another layer that couples must learn to recognize and deal with. While asymmetries of witness position are problematic for couples, the bigger problem is finding oneself in any position other than aware and empowered. In the session with Isabelle and Thomas described above, Isabelles tirade was fueled by her inability to accept that Thomas was paralyzed by her illness. Overwhelmed by her own losses, she was unable to manage her guilt and shame, denying the effect of her illness on Thomas, thus acting from the unaware but empowered witness position. Her power was ineffective, of course, and consisted in berating Thomas. Thomas was keenly aware of Isabelles vulnerabilities but felt overwhelmed by them, unable even to defend himself from her attacks. The only response he could imagine was a confrontation and this he would not do, fearing its devastating consequences to his fragile wife. My work with them included helping them understand how hard it was to witness, to bear, each others pain. To help couples feel more able to take in each others experience and feel (some) clarity about what actions they can take, therapists first need to provide some information about witnessing itself. Although the experience may be pervasive, people often have no frame, concepts, or language for it. It is a relief to identify such a central experience and to realize that both people are faced daily with witnessing that their partner experiences self-loss. Awareness of this is hard to bear; witnessing compounds ones own experience of self-loss. However, appreciating that this is their existential situation, recognizing how wounding it is when a partner fails to recognize ones plight, hopefully motivates couples to face what is so. In addition, people do feel better when they can identify actions to take to ameliorate suffering, even if they are small and temporary. It is especially helpful if couples can perceive the illness as a relationship issue, as our illness. Both clinical (Skerrett, 2003) and empirical research (Acitelli & Badr, 2005) has found that couples handle the stress of illness better if they perceive it as a mutual problem. For some couples this is an easy extension of their prior relationship; for others it is a stretch. Unless illness befalls couples with whom one has already been engaged in treatment, it is crucial to get a good sense of the preexisting dynamics and arrangements between the couple. Otherwise, their strains and strengths are difficult to understand fully. Part of the work is getting filled in, as we would under any circumstance. The press of illness concerns, however, sometimes short-circuits the necessary background inquiry, creating difficulties down the line. For instance, had I understood better how Isabelles childhood trauma history had showed up in her relationship with Thomas prior to her developing her seizure disorder, we all would have been better prepared for some of what unfolded between them. Managing trauma Expertise in trauma is essential for anyone working with the physically ill. Illness itself can be traumatic as can pain. Recent meta-analyses of heart attack patients suggest that
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one in eight suffer PTSD as a consequence of their fear of death (Edmondson et al., 2012). The relationship to ones body is susceptible to becoming traumatized. For example, as the body malfunctions, a curious paradox occurs. Awareness of the body becomes more acute simultaneous to the offending body part being experienced as no longer part of the self (or a bastard relation to the self). A properly working kidney, for instance, is not usually in consciousness but is self. Once it requires dialysis, there is hyper-awareness of it but exclusion from self (Osborn & Smith, 2006). This is a significant way that the relationship to ones body can become traumatized. So too a person with chronic health problems may become traumatized by the health care system as it tries to care for the patient. This can happen during procedures, routine care, and even in dealing with a billing problem! Clinically, a therapist must be able to help both the person with the physical problem and the partner distinguish new traumatic experiences from retraumatization (from past experiences in or out of the health care system) and intense fear since either person may be suffering from any or all of these experiences. It is crucial to know how to manage hyperarousal and its manifestations (e.g., irritability) as research shows that this is particularly destructive to relationships (Swan & Scott, 2009). Following a seizure in which Isabelles hand was badly burned when she tipped over a scalding cup of coffee, Thomas and Isabelle had a volatile session in which Isabelle was triggered into a trauma response in the office when she perceived me as paying more attention to Thomas than to her. Having previously gotten permission from her to place my hands on her knees should she become acutely traumatized, I pulled my chair up close to where she was sitting on the couch and began working with dearousal techniques by slowing my breath and encouraging her to do the same, tapping alternately on her knees, and speaking about what was happening to her in a slow, even voice, suggesting how she could use her observing ego to let herself know she was safe. After about 20 minutes, Isabelle recovered and then, exhausted, was able to talk about how her childhood experiences of being neglected had triggered a feeling of abandonment when she saw me turn my chair to face Thomas. He needed to talk about his horror in the emergency room when he saw Isabelles hand for the first time after her accident. With great care, Isabelle and I discussed how we could talk in the session with Thomas about his own trauma experiences in the ER without triggering a trauma response in her. By drawing up a chair next to mine and acting as a cointerviewer, Isabelle was able safely to listen to Thomas experience and respond empathically. Demoralization, spirituality, and reasonable hope Demoralization, which is a normal reaction to overwhelming circumstances when a way forward seems blocked, is a major problem for couples dealing with illness (deFigueiredo, 2007). Demoralization can be distinguished from depression by the fact that when the adversity passeswhether pain, uncertainty, helplessness, or lonelinessnormal mood variation is restored (Griffith & Gaby, 2005). Griffith and Gaby (2005) write, [D]emoralization is best countered by either (1) ameliorating physical or emotional stressors or (2) strengthening a patients resilience to stress. Acknowledging suffering and restoring dignity are potent in strengthening a patients resilience to stress (p. 110). There are many ways that spirituality can assist in countering demoralization (Griffith, 2010; Hoblitzelle, 2008; Rinpoche, 1994; Wright, 2005). Spiritual practice often involves acknowledgment of suffering. Yet, as Anne Morrow Lindbergh so accurately observes, sheer suffering teaches us nothing: If suffering alone taught, the entire world would be wise, since everyone suffers (Lindbergh, 1973, p. 124). Many other experiences must intertwine with suffering for it to be productive. Griffith (2010) has written a superb book
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on the ways religion and spirituality can heal and can harm in the context of illness, with extensive suggestions for clinicians. In my own work with couples, I ally ideas about reasonable hope (Weingarten, 2010) to conversations about suffering as one way of creating a container for the intense sorrow that these couples bear. I deliberately work so that more often than not couples leave a session believing that there are actions to takehowever smallthat will lead to a preferred outcome. We do hope together, as a relational practice; couples will come to appreciate that sorrow and great suffering can coexist with reasonable hope. In my own life, dealing with issues of self- and other-loss similar to the couples with whom I work, the belief that the future is uncertain gives me great comfort. I believe I convey that living with reasonable hope is a realistic possibility.

Working Directly with Issues of Self-Loss and Other-Loss

Biographical and narrative disruption Self-narratives are internal structures that organize the experiences of everyday life into themes that connect to historical biographical events such that there is a meaningful flow of a plot over time (Neimeyer, 2004). Virtually every part of the brain contributes to the creation of self-narratives that must then work personally, relationally, and (multi) culturally. Our self-narratives are laden with images and ideas of what is reflected back to us about ourselves from others. Self-narratives also represent the cultural possibilities available to us. The self-narrative can be disrupted at all three levels, personal, relational, and (multi)cultural, leading to a loss of narrative coherence, which, in any event, is probably best understood as a system principle that is never achieved (Neimeyer, Herrero, & Botella, 2006, p. 130). Illness is an experience that has the power to disrupt the self-narrative at all three levels. Neurologically, illness can assault the brain, either directly or indirectly through medications used to treat disease or pain. Either can alter our ability to access words and even to think. Anyone with chronic migraine, for instance, knows the unsettling challenge of deciding whether to lose language fluency due to the migraine itself or due to the effects of the medications for migraine and/or pain. Relationally, it is common that ill persons will see reflected back to themselves a person that they do not wish to be, whether this version is projected through compassionate or hostile eyes. (Multi)culturally, as Gramsci famously wrote, our subjective experience is determined by an infinity of traces left by the cultures with which we come into contact without leaving an inventory (Gramsci, 1971, p. 324). There are good and bad, acceptable and unacceptable, ways of being sick that all of us have internalized, oblivious to the fact that there are invisible (as well as recognized) standards to which we hold ourselves. Lapses can produce dismay or derogation, as well as behaviors that seem incomprehensible to others equally unaware of the traces influencing the person. These disruptions of the self-narrative can take several forms. Narrative disorganization occurs when events or experiences, like sudden or chronic illness, make it difficult to sustain a stable sense of oneself. Narrative dissociation, a second form of narrative disruption, results in a thinning of the self-narrative. At times the loss is not named or put into words even to the self. As a consequence, the self-narrative lacks both voice and audience. The third form of narrative disruption is almost the inverse of the second. In the case of narrative dominance, one narrative takes over and in effect colonizes the self-narrative, crowding out all other versions (Roos & Neimeyer, 2007, pp. 9192). As therapists we need to understand how all three forms of narrative disruption operate relationally, contribute to experiences of self- and other-loss, and can shift. In one particular incident that was related to me by a client, Taniaa vibrant, 60-year-old
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entrepreneur, married to a physical therapist with whom she has grown childrenshe acted as if all three forms of disruption were influencing her choices. The background to the situation was that Tania had had an episode of acute muscle weakness that had left her paralyzed for several days. The episode had begun over a period of weeks and Tania had ignored the symptoms until she could no longer walk. At that point she told her husband, who was flabbergasted, hurt, and frantic with worry until Tania was evaluated, diagnosed, and treated effectively. The episode was short-lived. Eight months later, however, Tania was attending an art opening in a distant city. Again, she noticed symptoms but refused to admit it to herself, her husband, or her physician. The daughter of a father who had survived the Armenian genocide as a child, Tania was the selected child to go it alone, succeed, and take care of others.5 In our first session, she quoted her father to me, If everyone gets on the caravan, get off. Tania developed an extraverted exterior but a profoundly solo interior life and, when the going got tough, she closed herself off to help. Following the second episode in which she only revealed her symptoms to her husband and physician when she could again no longer walk, both were nonplussed, but Tanias husband was angry as well. I saw Tania shortly after this second episode and one question was whether I should work with the couple or just with Tania. Precisely because of the presence of the three forms of narrative disruption, I decided to work with Tania individually until she could better understand the reasons for her failure of self-care. I wanted her to experience less internal chaos before deciding whether to invite her husband to the sessions. My framework was always a couples framework, a systems framework, but the choice of treatment modality was based on my assessment of the sequence of work that needed to happen. First, Tania needed to understand her motives better, then we needed to see how she could work to repair the breach of trust with her husband. Her medical condition had created profound narrative disruption. For a woman who had never relied on anyone and who was the go to person for several separate large networks of people, it was unthinkable and unacceptable to need help, even from her devoted husband. She pushed aside her awareness of the problem, denying it when asymptomatic and minimizing when symptoms occurred. The sway of her genocide legacy was so profound that it dominated a healthy self-care motive and led her to take major risks with her health. If anyone with symptoms of paralysis would go to the doctor, she would get off the caravan, dissociating so she could ignore the warnings. These strategies were ways Tania pushed away feelings of self-loss, which were indeed overwhelming to her when she finally faced them. Her strategies, however, had the unintended side effect of alienating her from her husband who felt hurt, devalued, and lonely as Tania isolated herself to deny her terror and to maintain her central position among family, friends, and colleagues. Our work initially was to make her risky behavior not getting medical help in a timely mannercomprehensible by lessening all three forms of narrative disruption. In dialogue, Tania came to realize the degree to which the genocide legacy she carried prevented her from acknowledging her physical frailty. She understood that that one narrative of her lifekeeper of the legacyso dominated her that now, in the context of a medical condition, she needed to dissociate from crucial information her body was providing to continue to live out the legacy. She understood the danger to her and to her marriage and was motivated to change: to pay attention to early warning symptoms. I chose to relax an emphasis on narrative coherence but decrease her narrative dissociation and dominance. Work with Tania shows that while sudden paralysis may produce narrative disorganization in anyone, narrative dissociation and dominance can be mitigated.
5

For a more complete discussion of Tanias history see Weingarten (2012).

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The weavers dilemma

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Part of the mitigation is helping someone bear looking at what is so. When there is physical illness, what I have called the weavers dilemma is often present (Weingarten, 2012). The weavers dilemma occurs when the invisible weaving we all do moment to moment no longer works. That is the practice of repairing small tears that happen continuouslyways we act and feel inconsistently with the primary experience of who we believe we areand repairing larger ones as best as we can becomes overwhelming. Certain life experiences are just too large, the rends too great and too many, for invisible weaving to suffice. In these situations, we become aware of the places no weaving will close. It is hard enough to look at this oneself but to face it relationally is agony. I find that an inchoate recognition of the weavers dilemma shows up in therapy at moments when language fails but communication between my client(s) and me feels strong. Narrative coherence may still be impossible but self-compassion is not. If the partner is present, a moment of intimacy may occur that allows the couple to shift from thinking that doing is the signifier of worth to recognizing that being can be. As Tania worked in therapy, she understood better the impact of the genocide legacy on her choices. She noticed how jumbled her speaking was and how often she dribbled off into wordlessness. She became aware of how frightened she was of her life making no sense to her if she fully took in the possibility of living with a significantly disabling condition. As she trusted me to care for her, she relaxed more, pushed herself less, and was able even to laugh with me when I once joked with her and said, Coherence isnt really all that its cracked up to be. She was able to admit how deeply she longed to be alone, to have time to rest and to heal. She took in her husbands feelings of rejection and his loneliness. Outside of therapy, but influenced by the work she did in therapy, they were able to reconcile. They restored parts of the relationship that had been lost to them while acknowledging the uncertainties of self- and other-loss that they now had to face. They realized that they could let go together. Letting go: The boatmans plight So much of what the chronically ill do is let go. It can be done with and without discernment, clumsily, or subtly knowing what and when to let go. I have called this the boatmans plight. My image is that of waking up each morning with a full boat and finding that the day consists of jettisoning overboard all but the most essential items so that one can stay afloat in the rough seas one sails. Each days losses recapitulate at the micro level the macro level dilemma: how to care for a self that longs to be other than it is? How to care for a self that cannot be what it might be were illness not a factor? How to tolerate a self that cannot relate to ones partner in the ways that one has always counted on? How to stay in love with oneself and ones partner as both face relentless diminishment? Sadly, there is no magic wand to wave over these conundra. There is no short cut or fancy solution. Letting go is the path toward acceptance, and resignation may be the best people can do. Letting go requires powers of discrimination that are hard to muster, much less master. People may let go too slow or too fast, of too little or too much. It is a Goldilocks problem. When a couple must both let go, inevitably there will be asynchronies. Mark and Lea are in their late seventies, both with cardiac issues. Lea has also had cancer. Older, frailer than Mark, Lea alternates between overdoing in her life and listening to her body telling her to rest. Mark pushes himself but overprotects Lea, according to her. Engaged in numerous pursuits, vital, long-married, Mark and Lea are experiencing rare tension and conflict as they find that they are often not on the same page regarding
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choices they must make in dealing with this stage of their lives, both aging and failing health. Watching ones beloved shrink is indeed challenging. During one session, Mark cried out, Yes, Im upset. I told you that. How many times do I have to say it? Nothing is going to change. Nothing is going to get better. OK? Ive said it. Im upset. Im angry. Now what? Had they been at home, his outburst would have ended the conversation but in the office, we could continue. Having worked with them for about 20 sessions at the time of this exchange, I could sit with them in the intensity of Marks reaction, offering engagement in the face of Marks expression of futility and pain. So often disengagement follows uncertainty; an uncomfortable silence follows shared awareness that there is not anything much anyone can do. But the way forward is in perceiving the spacious possibilities in the not anything much; the tremendous opening out that comes with just being with what is so. End of life It is precisely at that place, in that moment, that Suellen and I last met and then, because she committed suicide, we could never be there again. (For a discussion of my consultative relationship to Suellen and additional discussion of end of life issues see Weingarten, 2012.) Our conversation unilaterally ended. Connie, Alice, and I linger there. If a therapist works with those who are acutely or chronically physically ill, staying engaged to the bitter end, even to death, is a skill that must be honed. My own comfort was forged from experiences I had too young, the inability of my family to talk together about my mothers death and my fathers and my mothers oncologists prohibition against my talking to her myself. Perhaps in the thousands of conversations I had with her in my head over the 30 months of her illness, I created my own exposure therapy, desensitizing me to the inherent pain of such talks and binding my anguished longing to the possibilities latent in them. I not only have ease I have eagerness in relation to talk about death. I would not recommend my path to anyone. No one gains ease without experience, of one kind or another. Practice, observing mentors, role-play can develop skill; life experience is necessary to project ease, to bear pain, to feel compassion, to take care of all participants in the talk. Talking about death, about dying, about no longer being on the earth is part of the specific work that may be called forth when helping those coping with self- and other-loss.

CONCLUSION
Over the last 30 years there has been extensive work done on issues confronted by couples with chronic physical illness. Illness memoirs, a genre that did not really begin until the late 1970s, have also made an important contribution to what we understand about the experience of persons who are chronically ill or disabled. The concepts of selfloss/other-loss and the complex interrelationships between them are two more ideas to add to the therapists understanding of what couples face. I write couples face because I do believe that facing illness together is preferable to facing it as silos. However, it is likely unrealistic to imagine that both people will feel similarly at the same time. Moments of intimacythat is moments of shared understanding of each others experienceare the goal, not sharing the same experience at the same time, although this may happen. In this study I have offered several ideas that therapists may offer couples to help frame their experience for them, believing as I do that awareness and acknowledgment of the contours of ones suffering provides support for it. Among the ideas are that of self- and other-loss, witnessing positions, narrative disruption, the weavers dilemma, and the boatmans plight. For many couples, acknowledging the experiences to which these concepts
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refer provides enormous relief. The clinical paths that then follow from simple awareness and acknowledgment can go anywhere. As Boss and Couden (2002) so affectingly write, illness is indeed an unwelcome interloper in a couples relationship (p. 1354). Without preparation, experience, and self-care, working with couples coping with chronic illness can become an unwelcome interloper in our professional lives as well. As therapists, we work extensively with helping our clients take better care of themselves; this must be a deliberate and considered part of our professional practice as well. It is axiomatic now that family or professional caregivers can suffer from empathic stress disorders (Weingarten, 2003; Wilson & Lindy, 1994) or compassion fatigue (Figley, 1995). Without good self-care, we too can suffer diminishment, our own versions of self-loss. Self-loss/other-loss is just one more angle that can be usefully explored by couples and their therapists to an already well-described area of clinical work (Kowal, Johnson, & Lee, 2003; Ruddy & McDaniel, 2008). But it is one that is seldom noted and discussed. As someone who lives in a couple in which issues of self-loss and other-loss are profound, the opportunity to move them from out of sight to the center on occasion provides significant relief, even though their consideration is sad and painful. Still, looking together at what is so confers strength from the intimacy of knowing that one knows what the other knows, even if what one knows is not what one would ever want to know. It adds to the foundation of connection, like planks over a turbulent stream. It provides a place from which to look at what is truly there, at the cruel radiance of what is (Agee & Walker, 1941, p. 9). It is doing reasonable hope together (Weingarten, 2010). REFERENCES
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Gehart (Eds.), Collaborative therapy: Relationships and conversations that make a difference (pp. 6379). New York, NY: Taylor & Francis Group. Holt-Lunstad, J., Smith, T.B., & Layton, J.B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316. doi: 10.1371/journal.pmed.1000316 Kahn, D.L., & Steeves, R.H. (1986). The experience of suffering: Conceptual clarification and theoretical definition. Journal of Advanced Nursing, 11, 623631. Kowal, J., Johnson, S.M., & Lee, A. (2003). Chronic illness in couples: A case for emotionally focused therapy. Journal of Marital and Family Therapy, 29(3), 299310. Landau, J., & Hissett, J. (2008). Mild traumatic brain injury: Impact on identity and ambiguous loss in the family. Families, Systems, & Health, 26(1), 6985. Laurenceau, J., Barrett, L., & Pietromonaco, P. (1998). 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