Janice M. Morse
TOWARD A THEORY OF ILLNESS: THE ILLNESS-CONSTELLATION MODEL1
Get the habit of analysis—analysis will in time enable synthesis to become your habit of mind.
—Frank Lloyd Wright
Wellness is a state of optimal comfort that is disrupted by the occurrence of an illness episode. Although illness physiologically generally affects one individual, the experience of illness can affect and involve the entire family and other significant people in the experience of suffering, pain, and threats to life. Consequently, illness may be viewed as a distressing and disruptive period during which the minimization of suffering and the attainment of comfort become paramount. Because the ramifications of illness extend suffering beyond the individual to the family and others, attaining comfort takes the form of any number of strategies used by the ill individual, by those who are close to the ill individual and who share the suffering, or as an interactive process negotiated by any number of individuals involved in the illness experience. The goal of those involved in the illness experience is to decrease the suffering of the ill person or the shared suffering, thereby increasing well-being.
In the literature there are two major conceptualizations of the illness experience. First, illness has been conceptualized as the individual’s experience of symptoms, which has been extensively described as the medical model (Figure 33.1). From this perspective the practitioner focuses on the individual and is primarily interested in the patient’s report of physical symptoms as cues to underlying disease processes. A second view focuses on the person and considers illness behavior as the ability of the ill person to cope with or to respond to the disease process. For example, Lazarus (1966) viewed illness as a cultural, mental, and somatic stressor that threatens bodily harm and disrupts motivational behavior. More recently, researchers who use the phenomenological method have viewed illness from this perspective (e.g., see Kaufman, 1988). Thus this second conceptualization of the illness experience is more complex because it incorporates not only the physical symptoms, but it also incorporates the human responses to these symptoms.
A more comprehensive view of illness, called the Illness-Constellation Model, was developed. This model viewed illness as an experience that affects the sick person and his or her significant others. From this perspective, the ramifications of the individual’s illness experience cause profound changes in the interactions, roles, and relationships of those involved in the illness experience and result in a loss of normalcy. Particularly in the case of serious illness there is interplay of compensatory relationships between the sick person and his or her family and friends. The task of regaining normalcy, of regaining former roles and relationships with others, is a legitimate task that must be resolved before the person regains a high level of wellness.
In the Illness-Constellation Model, the illness experience is defined as a four-stage process. Stage I is the Stage of Uncertainty, and in this stage the individual detects or suspects signs of illness and attempts to make sense of these symptoms by determining their severity and meaning. Those closest to the ill person (usually family members and friends) observe that the sick person is unwell, but these observations may lag behind the experience of the ill person—or alternatively the ill person may have to inform others of the illness, for example in the case of a woman discovering a breast lump.
Stage II, the Stage of Disruption, begins when the individual makes a decision that the illness is real, is serious, and decides to seek help. This stage may also be initiated by the confirmation of a medical diagnosis or by the person suddenly becoming so ill that the decision to seek help is taken out of his or her hands by another person, for example taking the ill person to the doctor or calling an ambulance. This is a stage of crisis, a stage in which the individual relinquishes control and withdraws by distancing him or herself from the situation. At this point the individual becomes totally dependent on health care professionals and family members. Significant others become aware of the illness and the threat it poses, and they may hover, be vigilant, and, as concerned friends or relatives, suffer with the individual. In the case of serious illness, relatives and friends assume the day-to-day responsibilities of the ill person, such as taking care of the ill person’s children.
Stage III is the Stage of Striving to Regain Self, and in this stage the ill person strives to make sense of the illness. During this stage the ill person examines the past for reasons that explain the illness, and he or she tries to predict the future ramifications of the illness. Significant others find themselves committing to the fight, working and assisting with treatments and day-to-day tasks, and supporting and encouraging the individual. Preserving self, which involves conserving and focusing energy, becomes a priority for the sick person, while significant others engage in buffering behaviors; that is, behaviors that reduce stimuli and protect the sick person from undue stressors. As the ill person is placed in a passive role, he or she must constantly negotiate and renegotiate with others in order to preserve his or her self-identity, control, and roles, and as he or she regains wellness, he or she must negotiate and prove to him or herself and to others that he or she is well enough to resume tasks and responsibilities that have been assumed by others. Significant others who permit the ill person to be dependent and provide assistance with day-to-day tasks are hesitant to force the ill person to resume activities, yet they realize that although it is necessary for the sick person to relinquish some of his or her responsibilities and become dependent, total relinquishment on occasion may be harmful. The skill is to attain a balance or a reciprocal relationship in which the needs of both individuals are respected.
Frequently, this balance is attained by the sick person setting goals, and the attainment of these goals may indicate physiological improvement or a return to social functioning. While setting these goals, family and friends endure the illness process, policing and modifying the ill person’s goals to ensure that they are realistic and attainable and providing necessary, realistic support and encouragement.
The last stage, Stage IV, the Stage of Regaining Wellness, is the stage in which the ill person attains mastery by regaining former relationships and the control of self. During this stage, the ill person determines when he or she is “better” or adjusts to and accepts a changed level of functioning. Family and friends assist the ill person in making it through, providing support and allowing the ill person to gradually regain control of his or her life. The ill person focuses on taking charge, learning to trust his or her body, to recognize and monitor symptoms closely, and to live within the new limits set by the illness.
Table 33.1 summarizes the five studies included in this text and identifies the major strategies that were used by families and individuals in the various stages of illness. From the stages and strategies of the Illness-Constellation Model (see Table 33.2), developed by synthesizing the findings of these five studies, we elicited the commonalities of each stage and compared the main characteristics of each of the models.
In the following sections, the Illness-Constellation Model is discussed in detail in order to show how it affects both individuals and their significant others. As each strategy describes the ill person’s response, the equivalent strategy that describes the response of the family or friends is also discussed. For example, in the Stage of Uncertainty, both the ill person and the significant others engage in suspecting, and this is listed as “Suspecting ↔ Suspecting.” Next, the ill individual engages in Reading the Body, and the significant others engage in Monitoring. These strategies are listed in tandem as “Reading the Body ↔ Monitoring.”
The Stages of Illness and Focus of the Illness-Constellation Model as Described in Five Grounded Theories
Stage 1: The Stage of Uncertainty
• Reading the Body
• Being Overwhelmed
• Being Overwhelmed
Stage 2: The Stage of Disruption
• Relinquishing Control
• Distancing Oneself
• Accepting Responsibility
• Being Vigilant
Stage 3: Striving to Regain Self
• Making Sense
• Preserving Self
• Renegotiating Roles
• Setting Goals
• Seeking Reassurance
• Committing to the Struggle
• Renegotiating Roles
• Monitoring Activities
Stage 4: Regaining Wellness
• Taking Charge
• Attaining Mastery
• Seeking Closure
• Relinquishing Control
• Making It Through
STAGE I: THE STAGE OF UNCERTAINTY
Suspecting ↔ Suspecting
The illness experience commences as the individual begins to suspect that something is wrong. They note that things are not quite right—their periods are irregular, they seem more stressed, a “funny feeling” of nausea overtakes them, they lose their appetite, or they find a lump in their breast—and confronted with these symptoms, the individual begins to suspect that something is wrong:
I thought, “Gee, should I stop for lunch or shouldn’t I?… I didn’t have any breakfast today, maybe I’m feeling a bit hungry.” So 1 made myself a half a sandwich. I normally make a whole sandwich, and I thought, “I wonder why.”
Family and friends may also note behavioral changes in the ill individual or they may be directly told by the ill individual about suspicious symptoms. In turn, family and friends also are drawn into the process of suspecting. Doubts begin to creep into the minds of the individual and family members as they grapple with the idea that something serious may be happening.
Reading the Body ↔ Monitoring
The symptoms experienced by the ill individual may begin insidiously and slowly, and the question the person asks about each subtle change is: Is this normal? For example, in Chasse’s hysterectomy study, women tolerated increasingly severe dysmenorrhea, watching their periods to see if this one would be heavier than the last, to see if the pain was increasing in severity, or if the menstrual flow was normal or heavy. People begin reading their body by using their own past experiences to evaluate the present symptoms and, when the uncertainty continues, by comparing their own symptoms with their friends’ experiences with menstruation. Chasse referred to this process as establishing the boundaries of normalcy. Similarly, in Johnson’s study of women heart attack victims, although the illness onset was necessarily more acute, all of the informants tried to evaluate the seriousness of the symptoms and to place the symptoms within the boundaries of known, familiar, and more common but less serious illnesses. At the onset of the heart attack these individuals tried to explain their symptoms as “the flu” or “something they ate.” One informant, who had the classical signs of heart attack listed on a bookmark, still did not interpret his symptoms correctly. Yet all of Johnson’s informants were surprised at the fuss, speed, and sense of urgency their symptoms created when they finally consulted a doctor or reported to the emergency room. Were these people expecting heart attack symptoms to be more painful or more dramatic? Or did they not seek help, as Johnson suggests, because they preferred to remain in control and to regard their symptoms as trivial? The flu or the upset stomach was considered such a trivial complaint that these individuals would rather avoid the embarrassment of “troubling the doctor” than have their fears alleviated:
I only had a slight idea what might be happening, but I thought the standard, “Hey it can’t be me.” So I got up and threw up once. I was getting weaker all the time. But I stayed at work for the day.
In order to accurately read their bodies, ill individuals begin to identify triggers or situations that stimulate an attack or worsen or alleviate the symptoms. Again, in Chasse’s study, this occurred frequently and over a long period of time before the women accepted the fact that their periods were abnormal and that they should seek medical help.
This process of normalizing symptoms is not limited to physical symptoms; emotional states are evaluated as well. For example, in Lorencz’s study, the informants in the psychiatric hospital complained about increasing loneliness, problems with interpersonal relationships, and problems remaining employed, but again, one thing was clear: they saw themselves as “not making it” and needing some help.
It is important to note that others also observed the sick person: monitoring the ill person for symptoms or assessing their level of wellness. In Norris’s study, the mothers did this as soon as they suspected their daughters were involved in sexual relations, observing their daughters for signs of pregnancy:
I’ve kept this to myself, but being a mother who washes her daughters’ clothes, I do know when they have their monthlies. And I noticed that [daughter!] didn’t have anything on her clothes. It flashed through my mind (that she was pregnant) … I certainly didn’t want to believe it.
Similarly, Wilson reported that husbands of women undergoing chemotherapy monitored their wives over an extended period of time in order to determine what was happening to them.
Being Overwhelmed ↔ Becoming Overwhelmed
Eventually, the symptoms develop to a point where the individual is overwhelmed, both physically and emotionally, by a sense of uncertainty. Perhaps the process of deciding when you are sick enough to need a doctor is easiest when the symptoms are so severe that there is no question that medical help should be obtained immediately or when the situation is taken “out of the sick person’s hands.” The state of limbo, of the patient not feeling well and yet not being sick, may be so stressful that receiving an actual diagnosis, the confirmation of being sick and the respite from an intolerably ambiguous situation, may be almost a relief:
It’s the unknown, the not knowing, which is the most stressful. It’s fear of the unknown; fear of your mind starting to go off in all directions. You imagine all kinds of things.
On the other hand, the confirmation of malignancy (e.g., finding a breast lump) may be devastating. The way the diagnosis is received by the patient depends on the severity of symptoms, the type of disease and prognosis, and the course of the illness.
If physicians dismiss the reported symptoms and do not provide the expected care or if they suggest unacceptable treatments or surgery the patient begins to “doctor hop,” consulting one doctor after another. Chasse notes that her informants said many physicians did not give them information when requested, and in many encounters her informants were not treated with empathy and respect. Despite the fact that they were reporting severe and quite disabling symptoms they felt the physicians treated their complaints as “all in their head,” and because they felt that they were not being taken seriously they were not in a position to negotiate treatments. If the patient’s spouse is supportive during this time, this support adds weight or credence to the suspicion that something is really wrong, and the process of seeking medical help is eased considerably for the individual.
As family and friends witness the ill individual seeking medical assistance the fact that their relative or friend is ill becomes a reality. Often the friends and relatives become overwhelmed by worry and concern, particularly if they detect that the individual concerned is worried. Apprehension begins to grow during this waiting period, particularly if it is necessary for the ill person to undergo tests to rule out serious complaints. They vacillate, one moment considering the possibility of a devastating disease and the next moment reassuring themselves that such bad news is unlikely:
Waiting for results from the lab was really a torture situation. It was extremely stressful when you suspected very strongly, and yet nobody [will] come out and [say] this is what it is. When you’re waiting for the phone to ring, you’re wondering. It was very stressful waiting to hear. You felt so damn helpless. Phoning didn’t seem to help. Nothing seemed to help.
STAGE II: STAGE OF DISRUPTION
The Stage of Disruption begins when the individuals realize that medical intervention is required and they no longer have a choice about whether or not they can manage their symptoms alone: either the symptoms are too severe or the uncertainty is unbearable. A critical point is reached whereby either the person (or if they are unable, their relatives) transfers the responsibility for decision making to the physician.
Relinquishing Control ↔ Accepting Responsibility
Once the sick person enters the medical system, he or she no longer really makes decisions: choices become a medical prerogative. Rather than presenting alternatives for the patient to select or allowing the patient to decide whether or not treatment will even be instigated, the physician presents the selected course of treatment. Several factors contribute to the relinquishing of control on the part of the patient. First, in the physician–patient relationship the physician is often viewed as the expert and the patient as the follower of expert advice. Second, urgent situations often necessitate the relinquishment of control, either because immediate action on the part of the physician is necessary or because the patient is not considered competent enough to make an informed decision. This lack of competence is exacerbated because of symptoms such as pain and the patient is not considered knowledgeable enough to make an informed decision, and perhaps because the patient is seen as a “case” rather than as a person.
This sense of lack of control is also felt by family members. For example, although the mothers and daughters in Norris’s study had received permission from the Therapeutic Abortion Committee to have an abortion, they had difficulty grasping the fact that the abortions were actually going to take place, that the nightmare would soon be over. Similarly, Wilson notes that following the diagnosis for cancer her informants “were overwhelmed by the speed with which things happened.” Once told about the diagnosis, these informants were pushed “from the frying pan to the fire, pretty quick,” and they felt the necessity to receive immediate treatment. They felt thrust into a new situation, and there was “nothing they could do about it.” This sense of immediacy was accelerated because they had an image of the cancer cells multiplying exponentially on a daily basis. Patients in this situation feel they have no choice but to trust the decisions of the physician. When a suspected heart attack victim experiences emergency care, the speedy response of health professionals is legendary. The patients are not active participants in their treatments; rather, they are viewed as objects that “have things done to them.” Perhaps the most extraordinary description of this phase is from the psychiatric patients in Lorencz’s study:
And the, all of a sudden, wham, I’m stuck in the hospital, and I was changed … and then the doctors got at me, and I was changed. I was—I didn’t—I didn’t give a damn for a while, eh? And the, and then, it got harder, even harder. And then the doctors got at me, and that’s where I’m at. The doctors are talking about me, eh? What they think I am, and what they think, feel I want, and what I—do, and what I think, and stuff like that.