ambiguous loss from chronic physical illness: clinical interventions with individuals, couples, and...

Ambiguous Loss from Chronic Physical Illness:Clinical Interventions with Individuals,Couples, and Families

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Pauline Boss

University of Minnesota

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Barbara A. Couden

Indiana State University

The theory of ambiguous loss is applied to chronic illness in individuals,couples, and families. Lack of clarity about prognosis, daily physical con-dition, and fluctuating capabilities create relationship confusion, preoccu-pation with the illness, or avoidance of the ill individual. Immobilization,depression, and relationship collapse may occur in response to features ofchronic illness over which there is no control. A case study illustrateshelpful therapeutic interventions for couples and families with chronicallyill members. © 2002 Wiley Periodicals, Inc. J Clin Psychol/In Session58: 1351–1360, 2002.

Keywords: ambiguous loss; chronic illness; couples therapy

This is the paradox. To regain a sense of mastery when there is ambiguity about a loved one’sabsence or presence, we must give up trying to find the perfect solution.

—Boss, 1999, p. 107

Ambiguity about a person’s absence or presence has for centuries been the stuff ofgood theater and real life, but the term ambiguous loss, is recent in the literature ofpsychology and family therapy (Boss, 1999, 2001). Research has supported the idea thatambiguity creates a powerful block to coping and grieving, predicting symptoms such asdepression, anxiety, loss of mastery, hopelessness, and conflict, all of which erode coupleand family relationships (for overview, see Boss, 1999).

Correspondence concerning this article should be addressed to: Pauline Boss, Ph.D., Professor, Department ofFamily Social Science, 290 McNeal Hall, 1985 Buford Ave., St. Paul, MN 55108– 6140; telephone: (612)625-1900, e-mail: [email protected]; and Barbara Couden, M.S., Ph.D. Candidate, Assistant Professor, Depart-ment of Counseling, Indiana State University, Terre Haute, IN 47809; telephone: (812) 237-7762.

JCLP/In Session: Psychotherapy in Practice, Vol. 58(11), 1351–1360 (2002) © 2002 Wiley Periodicals, Inc.

Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/jclp.10083

Ambiguous loss is defined as a situation where a loved one is perceived as physicallypresent while psychologically absent, or physically absent but kept psychologically presentbecause their status as dead or alive, dying, or in remission, remains unclear. Our premiseis that the most stressful losses are those that are ambiguous. When people are unable toobtain clarity about the status of a family member, they are often immobilized: decisionsare put on hold; roles remain unclear; relationship boundaries are confusing; celebrationsand rituals are canceled. Couples and families may remain immobilized until they areable to perceptually reconstruct the meaning of the ambiguity surrounding their lovedone’s absence or presence. The ill person, too, experiences ambiguous loss. They arehere, but no longer as they once were. For example, a husband has so much pain all thetime that he is emotionally unreachable; a wife has her uterus and ovaries removed and isno longer interested in sex; a parent finds out he or she is dying of cancer and no longerwants to talk to the children.

In this article, we explore the effects of ambiguous loss that may be caused byphysical illness. We not only discuss the impact of illness on the family, but also the lackof clarity people with chronic illness experience about their status as either being well orill. While the theory of ambiguous loss has provided therapeutic intervention points for otherpopulations, it has not previously been applied to physical illnesses. We hope that the pre-sentation of our ideas will encourage discussion and further testing of this theory.

Ambiguous Loss

Ambiguous loss is a phenomenon that can affect the patient and caregiver, and also theirmates and families. Illnesses that are difficult to diagnose and have no cure are rife withambiguity. Because genetic factors and personal resilience respond to treatment and bodilyinsult differently, it is difficult to predict. It is not uncommon for patients to wonder ifthey will die prematurely or if the progression of their symptoms will hurt their closerelationships. The deluge of ambiguity often becomes as debilitating as the illness itself.Innumerable diagnostic tests meant to clarify one’s prognosis make people feel as thoughthey’re riding an emotional roller coaster between hope and hopelessness. Individualswith a clear diagnosis face a life of potentially debilitating symptoms that often impingeon their general well-being and their relationships. People with ankylosing spondylitis,rheumatoid arthritis, or multiple sclerosis, for example, can expect increasing musculo-skeletal difficulties and chronic pain over time. Emphysema and asthma prevent othersfrom the level of vigorous activity they may have previously enjoyed. Symptoms asso-ciated with illnesses such as fibromyalgia, lupus erythematosus or sickle cell anemia areeven more vague and unpredictable. Problems that cause acute renal failure may lead toa temporary collapse of health and life-long dialysis (Luckman & Sorensen, 1974).

Many with chronic physical illness look no different than other people, so familymembers and friends may not realize why they are preoccupied with pain or their prog-nosis. They expect them to do more than they can. Getting sick with just a cold becomesa crisis, since it exacerbates their disease symptoms. In addition, the patient’s conditionebbs and flows, some days able to be as they always were before the illness, other times,preoccupied with pain and exhaustion. If they emotionally withdraw, they become increas-ingly psychologically absent.

If ill people become preoccupied with the management of their symptoms, they mayforgo or are left out of work or leisure activities with family and friends. Ambiguity aboutwho is included in family activities increases. This typically happens with more seriousprogressive illnesses such as dementia. On any given day, for example, a woman we sawwith Alzheimer’s treated her son alternately as a stranger, parent, or son. He also shifted

1352 JCLP/In Session, November 2002

his perceptions of her from day to day. The rules, roles and boundaries governing theirrelationship and especially the son’s behavior toward his mother were always in flux.Some days he was directive with her; other days he honored her requests as a dutiful son.He was unsure about continuing their Saturday ritual of walking in the park. Seeing howconfused she was, he decided to give up all hope of ever being able to relate to her againas his mother. Then the next day she scolded him for speaking to her in an imperative toneof voice. He felt confused and unable to make sense out of what was happening. When wesaw him, he was preoccupied with trying to figure out their ambiguous relationship at theexpense of his own personal relationships and work obligations. His stress-level was high.

Such cases are not unusual. As we apply ambiguous loss theory to chronic physicalillness, we use the family-stress perspective, since it provides windows for prevention aswell as treatment. The premise is that human beings have the motivation and capacity toactively cope with stressful life situations, provided they can understand their situation inways that open up rather than immobilize opportunities for reorganization. The challengefor coping is how to proceed when ambiguity blocks understanding. Nothing makessense when a loved one is psychologically absent while physically present, often the casewhen a partner has chronic pain or serious illness. When illness cannot be cured, peoplemust simultaneously hold two opposing ideas in their minds: “The person as she or hewas is gone; but that person is still here and in my life.”

From this perspective, the freezing of family process is less likely the result of illnessthan from the ambiguity. What Freud labeled as melancholia and modern diagnosticmanuals label as pathology are often normal reactions to untenable situations of ambigu-ity: we have lost something, a person as they once were, but because of the ambiguity, wecan’t move on. Coping is blocked: behavioral adaptations become non-existent or dys-functional as the family waits and wishes for a miracle to put things right again.

From the family-stress perspective (Boss, 1999, 2001), there are five reasons whythe ambiguity surrounding an illness can make people feel helpless and thus more proneto depression, anxiety, and relationship conflicts. First, the ambiguity surrounding theillness keeps people confused, so they don’t know what to do or what decisions to make.Cognitively immobilized, many choose irrational responses; they close out the ill person,and act as if he or she is already dead and gone. Or they deny the illness exists, andinteract with the ill person as if nothing were wrong. Second, the ambiguity surroundingthe prognosis prevents reorganization of family roles, rules and rituals. Everyone stays asthey were, waiting for the illness to go away. Third, without the customary markers ofloss, the family’s distress remains unverified. With no validation, any changes or adap-tations are considered premature, so the system is frozen in place. Fourth, the ambiguitysurrounding the illness causes even the strongest of individuals and families to questiontheir view of the world as fair and just; the search for meaning requires family discus-sions as well as personal contemplation. Fifth, an ambiguous loss of long duration becomesphysically and psychologically exhausting for even the strongest of individuals, couplesand families. Symptoms may be a result of fatigue more than psychological weakness.

From this contextual perspective, we propose a more systemic view of patients andtheir family members to see more than their individual illness symptoms. Therapists andhealth providers should take into account a couple’s or family’s unique ways of copingwith ambiguity and how they make sense out of it, rather than focusing only on theillness. Regardless of gender, generation, race, ethnicity or sexual orientation, ideas aboutambiguous loss provide a more general lens for understanding symptoms of depression,anxiety, somatization, and relationship conflict. It is not surprising, for example, thatambivalence results when there is ambiguity about one’s absence or presence. A husbandwith diabetes may shun his wife because the illness has impaired his sexuality, and she is

Ambiguous Loss and Chronic Physical Illness 1353

confused by his emotional withdrawal and because he no longer touches her. Therapistswho address only intrapsychic symptoms may miss the external sources of ambivalenceinherent in situations of ambiguous loss which remain unsolvable, through no fault of thecouple.

Chronic situations of partial absence and presence are frequently a reality for fami-lies where there is a loved one with organic brain syndromes and terminal illnesses suchas cancer or HIV/AIDS. When healing is impossible, work with such families is oftendeemed less valuable. The assumption is that since a state of ambiguity remains, workwith such patients and families who are “in limbo” is of lower status in the hierarchy oftreatment. If clinicians hang on to the belief that only a cure and clarity are the positiveoutcomes, then we too reinforce the all-too-common perceptions of chronic physicalillness as hopeless and helpless situations to merely endure.

We believe a more realistic clinical goal is to help the family learn how to live wellwith the stress of long-term ambiguity, when pain has become the “other” in a couple’srelationship, when a disease has become an unwelcome interloper. Even with a physicalillness that is physically paralyzing or terminal, a kind of healing is possible if interven-tions are constructed using a family-stress-management model rather than a medical model.When a family member has a physical condition that won’t get better, the only windowfor change lies in the family’s perception of the ambiguity. The clinical goal is to enablefamily members—the patient and family caregivers—to remain as self-determined aspossible in spite of progressive debilitation and ambiguity of status.

One intervention is to arrange family meetings (which include the ill person if pos-sible) to set the stage for conversations among family members of several generationsuntil the group reaches some measure of consensus about what has been irretrievablylost, as well as how to enjoy the capabilities the ill person still has. Take the example ofa husband whose wife has chronic fatigue syndrome. Both must be helped to recognizethat the assumption of perfect health is gone and that some days are a wipeout because ofexhaustion. But they must also be helped to see that they can have many good daystogether once they learn how to best reduce the impact of illness on their everyday lives.In the case of parents of a child with muscular dystrophy, they must come to realize thatthey still have their child to love and touch and interact with, but they have to let go oftheir dream that their child has robust health. Meeting with other families experiencing asimilar ambiguous loss often helps in this process.

While all of the guidelines for dealing with ambiguous losses cannot be recountedhere, an important intervention is to label what people are experiencing. Those sufferingfrom ambiguous loss are often surprised and visibly relieved to hear that their distress hasa name. With this cognitive awareness, they can more easily begin the coping and griev-ing processes, and ultimately come to some level of understanding about their situation.Spouses of dementia patients or brain injury survivors are often told by well-meaningprofessionals or friends that they’re lucky because a mate is still alive and with them.This does not help when they feel they no longer know the person with whom they areliving. Labeling their loss as “ambiguous” allows them to recognize the real source oftheir distress, begin the process of coping and grieving, and move on with their lives inspite of the ambiguity (Boss, 1999).

Case Illustration

The complexity of ambiguous loss and difficulty detecting its presence when there ischronic physical illness is illustrated by the following case treated by a marriage and


family therapist with a medical background (Couden). A wide range of therapeutic ori-entations could also effectively address the issues raised in this case study. Our choiceto use ambiguous loss as a therapeutic focal point offers a new approach to augmenttherapists’ repertoire of interventions.

Presenting Problem

Doug presented to therapy with the complaint that his wife, Shirley, had given him anultimatum to put an end to his workaholism or she would file for a divorce. Shirley hadrecently stopped drinking and realized that her husband was emotionally unavailable toher. In her newfound sobriety, she was interested in a greater level of emotional intimacywith him than he was. Doug admitted to working 12-hour days in his graphic arts studio.That he loved his job was evident by the large number of contracts he received for hiswork. It was not unusual for him to spend Friday evenings and Saturdays creating newdesigns either at work or in his home office.

As we discussed his relationship with Shirley, Doug revealed that he had been involvedin several extramarital affairs and had just ended a 3-year relationship with a woman hehad met at a convention. Shirley knew about her because the woman had been followinghim home and watching them from her car, parked in front of their house. Shirley wasfurious, but she knew of at least two other affairs, and Doug did not think she would leavehim on account of yet another indiscretion.

Shirley and Doug had two sons. The eldest was married but recently separated afterhe became involved with a woman over the Internet. The youngest son was a collegestudent who had several live-in girlfriends over the last two years and had been recentlyjailed for partner abuse.

After Doug and his wife got married, they immediately moved to another state wherehe had been stationed in the military. Shirley’s mother was so angry at them for movingaway that she all but cut off communication with them, not even wishing to see hergrandchildren when they were born. This had not come as a surprise, since Shirley’smother was an alcoholic whom Doug described as “very weird” when she was sober.Shirley’s father called from time to time, but since he knew his calls would anger hiswife, contact was infrequent and unsatisfying. After Doug’s military obligations werefulfilled, Doug and Shirley moved to their present home in 1971.

After explaining these events, Doug sat back and looked expectantly at me as thoughthere was nothing else to say. I still had not heard anything about their relationshipduring the last 30 years. With more prompting, Doug explained that Shirley had starteddrinking heavily when she turned 27. Now that she was finally sober, she wanted morefrom him, and quite frankly, he admitted, he didn’t feel like sharing more time withher or being close to her. I asked when they last had sexual contact. “Twelve yearsago,” he replied. Doug stated that it had been such a terrible experience that he tookgreat pains to avoid the possibility of having sex with her again. Typically, he’d awakenearly and get out of bed before she did. Then he would go to bed after she was asleep,even though he fell asleep in front of the television every night. Yet, he wanted toremain married to Shirley, and said he loved her deeply. They enjoyed their grandchil-dren together and maintained the weekly ritual of going out for Sunday brunch afterchurch.

I was clearly missing something. Continued discussion of their relationship providedlittle additional information, except the fact that their sexual relationship suddenly stoppedwhen Shirley turned 40. Doug looked uncomfortable and mumbled something about


Shirley’s “awful digestion problems.” I found the missing piece to the puzzle. Shirley hadbeen diagnosed with acute-onset Crohn’s disease when she turned 27 years old. Thisprogressive, inflammatory condition affects the intestines, producing bloating, chronicdiarrhea, and initial weight loss. Her alcoholism also dated to that same year. Dougdescribed numerous trips to the hospital because of her episodes of rectal bleeding andmedical management. At some point Shirley started taking anti-inflammatory steroids,which caused her to gain 80 pounds over one year. The prescribed antibiotics gave herrecurring yeast infections.

Twelve years ago, Shirley’s digestive tract became so inflamed after years of illnessthat she underwent surgery to remove a large portion of her intestines and create a per-manent colostomy. Doug had only been able to look at her naked once since then. Hedescribed his horror at seeing the plastic bag with fecal stains, dangling from her abdo-men. Without discussing his shock and fear, he engaged in intercourse with her for whatwould be the last time. He had been acutely aware of an unfamiliar, slightly acrid odor,and was afraid the colostomy bag would come off. Sensing his hesitance, Shirley tried toexplain that it was securely attached and asked to show it to him. He could not look at itand did not think he could hide his disgust enough to talk about it.

Doug cried while he recalled this incident. He had made a conscious decision toavoid intimate situations with her again, while providing a comfortable life for her. Hedared not become too emotionally vulnerable with her because he feared that she woulddie from her illness, leaving him devastated. He was also caught between being terrifiedof losing her and acting as though nothing was different.

During the last year, Shirley had developed severe arthritis, prompting her to seektreatment for her alcoholism. After being sober for 6 months, she wanted a strongerrelationship with Doug but also needed his support. Shirley had joined a support groupfor people with Crohn’s disease, and the members had encouraged her to talk more openlywith her husband about her illness, needs, and their relationship. While she seemed to beable to come to terms with her disease, Doug could not. Even though her arthritis was aconstant reminder that she was no longer the healthy woman he had married, there wereperiods of time during which she was free of abdominal pain.

Doug believed he would either have to view Shirley as dying, or perfectly healthy.He could not find the in-between possibility—that he was living with a woman whoselimitations required adaptability, but whose degree of general health allowed her to bemuch more involved in life than was currently assumed. Doug’s affairs had not beenmerely a need for a sexual outlet. These relationships kept him out of the house andpreoccupied so he did not have to actively think about Shirley. Doug had become anemotional fugitive instead of living with the ambiguity of his wife’s status. In addition,their sons may have tried to deal with their anxiety and stress by relationship involve-ments: one through an affair, the other, by emotional preoccupation and abuse.

Course of Treatment

Doug and Shirley agreed to address their relationship concerns in couples therapy. Nei-ther of them had realized how Shirley’s illness had affected their relationship. Shirleythought Doug’s emotional aloofness had been prompted by her drinking, a perceptionwhich served to protect her from the impact of her diagnosis and resulting surgery. Dougassumed that Shirley was embarrassed of her colostomy, so his avoidance of her bodywas perceived as a way to protect her from feelings of shame and inadequacy. Theyanticipated further exploration of these patterns with dread. But when Shirley’s drinkingand Doug’s affairs were reframed as efforts to avoid dealing with the ambiguous losses


inherent in Shirley’s illness, both became less defensive and eager to discuss their indi-vidual behaviors.

We discussed family of origin issues that influenced how well Shirley and Dougwere able to tolerate living with ambiguous loss. Doug’s 11-year-old sister had died ofcystic fibrosis after a hard battle with the disease, but her name was never again men-tioned in the family. When his father’s business failed, there simply had been no discus-sion of what the family would do to get along. These two family nodal events sentpowerful messages to him that painful losses were not to be talked about, so he did notknow how to discuss what was happening within his marital relationship. In additionto having never come to terms with his sister’s death, illness signaled certain death tohim, contrary to the reality of Crohn’s disease. Shirley had never known how to deal withthe ambiguity of having parents who were alive but physically and emotionally unavail-able. Alcohol had protected her from this painful dynamic. Therefore, Doug’s emotionalabsence, which mirrored her parents’ estrangement, was especially emotionally chargedfor Shirley.

Doug was so frightened that she would die that he had never become informed aboutCrohn’s disease. I referred him to an ostomy nurse specialist who explained the physiol-ogy and required care of a colostomy. Through online resources and medical articles, hebecame informed about treatment options, prognosis, and concerns of people with Crohn’sdisease. This information provided him with a greater sense of control and predictabilitywhen he discussed Shirley’s symptoms and health needs with her. Because of my medicalbackground, I was able to answer his questions about the illness and explain how othercouples were able to enjoy sexual activity. I suggested that Shirley place a hand towelover her abdomen during intercourse until Doug could feel more comfortable and wasreassured that the bag wouldn’t come off during lovemaking. Shirley became creativeand bought a lacy dresser scarf, which she used for this purpose.

Because Shirley’s level of energy was good, she did not need any special care fromthe family because of her illness. But since there had never been open discussion about it,one family session was arranged. To Doug and Shirley’s surprise, the two sons and daughter-in-law accurately described how their parents had emotionally avoided each other overthe years. However, neither of their children realized how their relationships containedsimilar avoidance tactics. The sons had taken sides with Shirley, despising their fatherbecause of his affairs. This was the first time Doug and his sons discussed how difficultit was to be in relationships with women they loved without the ability to express theirfeelings of tenderness or concern for them. Shirley explained her fear that if she were toask the family for help occasionally, they would treat her as if she were an invalid,incapable of doing anything for herself. This session brought a stronger sense of herpresence into the family in spite of her illness.

Neither the sons nor the daughter-in-law were informed about Crohn’s disease andfelt it was a death sentence. I referred them to the same online resources I had givenDoug, and encouraged them to ask Shirley directly about her experience with the illness.This began ongoing family conversation at home about what it was like to have theillness, what her needs were, what the family was concerned about, and how to maintaina cohesive family unit.

Doug and Shirley spent 6 months in couples therapy for 18 sessions, and participatedin two more family sessions to discuss the meaning of Shirley’s illness and how eachfamily member was learning to live with the ambiguity of Crohn’s disease. Although theywere sometimes frightened by their increasing emotional vulnerability, Doug and Shirleywere able to resume satisfying sexual contact and establish a deeper level of commitmentto each other. The family session not only helped the family openly recognize the impact


of Shirley’s illness on the family, but it also motivated the sons to learn how to commu-nicate with the women in their lives in more effective ways.

Treatment Considerations

In order to better understand how families construct their realities as they cope withambiguity from chronic illness, we link several theoretical constructs with ambiguousloss: Seligman’s learned helplessness (1975), Lerner’s theory of a just and orderly world(1971), and Pearlin’s ideas about mastery (1981) (Boss, 1999). In the case of a chronicphysical illness that is incurable, a more optimistic perceptual shift provides the onlypoint of entry for intervention. For example, even though Shirley has fairly goodhealth now, her life may easily be cut short by several years because of complicationsfrom Crohn’s disease. Continual focus on the pessimistic outcome would immobilizethe family.

Using the lens of ambiguous loss, clinicians can ask new questions which enable thefamily to begin reconstructing their perceptions and find ways to master their situation inspite of the ambiguity from illness. Is this person absent or present in your view? Basedon available information, is it likely he or she will ever be as you would like them to beagain? How can you as a couple or family construct new ways to be together, to haverituals, celebrations, and everyday interactions? How do family roles have to shift inorder to get the emotional and physical work done? Other questions may surface fromfamily members: Am I married or not if my wife can no longer have sex? Now that I amcaring for my mother, is she still my mother, or am I now her mother? Who is there forme? Who am I now that my partner, due to his illness, is so different?

If therapists validate the family’s ambiguous loss by labeling it for them, familieswill be better able to construct a new meaning of their situation and move on with theirlives in spite of the partial presence of a chronically ill family member. As they beginseeing the ill person as still in the family, but in a new way, the family boundaries androles become clearer. As perceptions are shared, the immobilized system begins to shiftand adapt.

Our overall challenge is to increase the family’s tolerance for ambiguity. We do thiswith a series of steps (Boss, 1999). Some are structural, some are psychodynamic, but alllead to mobilization and beginning the coping and grieving processes. After naming theambiguous loss, members are encouraged to work as a team to manage the situation whena person is so ill or in pain that they are emotionally absent and unable to perform in theirusual role, physically or expressively. If, for example, an elderly parent is ill, their spouseand adult children form a team for making decisions and providing care. Everyone sharesthe work, not just the women in the family or those who happen to live nearby. Even intraditional families, a husband cooks and does housework if his wife is ill; a wife drivesand manages money if her husband is ill. Younger family members teach and model thisrole flexibility for older family members. Males are encouraged to be nurturing andcaring because mothers, wives, daughters, and daughters-in-law are overloaded whenthey are the only nurturers and caretakers for ill family members.

As managed-care restrictions increasingly demand that family members care for theirill relatives at home, the theory of ambiguous loss can be helpful to better understand thestress family members must manage when caring for an ill family member. The fre-quently noted depression in caregivers may have more to do with the ambiguity of theirloved one’s absence or presence than with their heavy workload according to researchconducted by the University of Minnesota at the Minneapolis Veteran’s Hospital (Boss,Caron, Horbal and Mortimer, 1990). A caregiver’s perception of the patient as psycho-


logically absent while physically present predicts depressive and somatic symptoms infamily caregivers, more than the burden of caregiving. Thus, when ambiguity is added toa family caregiver’s load, their task is even more daunting.

For situations where the ambiguous loss is unrelenting and stress-levels high, weencourage the regular use of respite care as well as community and extended familysupport. Getting out and connecting with other people will minimize feelings of entrap-ment and helplessness for members of the caregiving family and thus have indirect ben-efit for the patient as well.

In the case of Doug and Shirley, Doug’s work required him to attend numerousconventions. Shirley did not always feel well enough to travel with him. Until theirtherapy sessions, Doug had used these trips away from home to meet other women. Henow focused on networking with men and women whose influence could assist in hiscareer advancement. Doug had never explained his excitement and sense of fulfillmentthat came from his work to Shirley. Doug continued traveling, but his housebound wifewas now part of his experience as he recounted his experiences and Shirley responded ina supportive manner.

The most difficult step in resolving an ambiguous loss is finally to make sense of it.Gaining meaning is difficult because a partial loss remains incoherent and irrational.Patients and family members tend to make sense of the illness situation on the basis offour characteristics: (1) their family of origin and early social experiences; (2) spiritualbeliefs and values; (3) habits of thinking optimistically versus pessimistically; and (4)their beliefs about mastery and how the world works (Boss, 1999). While this list is notstill tentative, it begins to help clinicians and researchers explore and test the process offinding meaning in ambiguous loss. Many people succeed. Shirley and Doug did. Withsurprising ingenuity, people reconstruct what looks like an untenable situation so thatthere is hope and even some fun in their lives. They avoid depression and somatic symp-toms by giving up on the wish for total presence or total absence. They learn to live withthe paradox.

Summary

In this article we have discussed the ambiguous loss that results from chronic physicalillness. While ambiguity also emanates from the lack of diagnosis or prognosis, our focusin this article has been on the phenomenon of ambiguous loss as perceived relationally bypatients and their family members. Chronic or terminal illnesses that cause people to beonly partially present causes high stress in the system. For this reason, clinicians shouldnot limit their assessment to the internal dynamics of the patient. Working more system-ically will provide opportunities for intervention that will ease the stress of all who mustlive with a physical illness. Psychotherapists will gain diagnostic and therapeutic data bylistening to patients’ and family caregivers’ unique stories concerning their history andexperiences with unclear loss.

Chronic illnesses are physiological conditions that occur most often because of geneticpredisposition, something that cannot be controlled. They are largely long-term and incur-able, so patient and family must learn to live with them with as little distress as possible.Learning to tolerate ambiguity by making sense of the ambiguity surrounding chronicphysical illnesses is a paradox: to regain mastery when there is no cure requires that wegive up on finding a perfect solution. Understanding that distress is caused by living withsomeone who is there, but not there, begins the process of prevention or therapeuticintervention for patients and families. While ill people may be preoccupied with pain,depression, or self-care, the healthy family members with more resilience and leeway


must take the lead in adapting to fluctuating absence and presence, a situation that maynot go away.

Living with ambiguous loss, while stressful, also has some advantages; it bringssurprises, it challenges, it rewards creativity for thinking up new ways to handle thework, leisure, intimacies, and rituals of family life (Boss, 1999). Those not insistent onmastery and finding perfect solutions to every problem can live with ambiguous losseswithout negative effects to themselves or the patient. This is the hope that sustains us aschronic physical illnesses continue to challenge couples and families with ambiguousloss.

Select References/Recommended Readings

Boss, P. (1992). Primacy of perception in family stress theory and measurement. Journal of FamilyPsychology, 6, 113–119.

Boss, P. (1999). Ambiguous Loss. Cambridge, MA: Harvard University Press.

Boss, P. (2001). Family stress management (2nd ed.). Newbury Park, CA: Sage.

Boss, P., Caron, W., Horbal, J., & Mortimer, J. (1990). Predictors of depression in caregivers ofdementia patients: Boundary ambiguity and mastery. Family Process, 29, 245–254.

Lerner, M. (1971). Justice, guilt, and veridical perception. Journal of Personality and Social Psy-chology, 20, 126–135.

Luckman, J., & Sorensen, K.C. (1974). Medical-surgical nursing: A psychophysiologic approach.Philadelphia: Saunders.

Pearlin, L.I., Menaghan, E.G., Lieberman, M.A., & Mullam, J.T. (1981). The stress process. Journalof Health and Social Behavior, 22, 337–356.

Seligman, M. (1975). Helplessness: On development, depression & death. New York: Freeman.


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