ADJUSTING TO CHRONIC ILLNESSES:Shock, Encounter, Retreat

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Health Psychology PSY408

Lesson 27

ADJUSTING TO CHRONIC ILLNESSES

"It's not fair" 12-year-old Joe complained. Why can't I eat the stuff I like? Other kids can. Why do I have to

check my blood everyday and take shots? Nobody else has to do that," He voiced these complaints as he

left the emergency room after suffering severe stomach cramps because he was not adhering to his medical

regimen. Hospital tests recently determined that Joe has diabetes, and he was not adjusting well to the

regimen his physician instructed him to follow.

His parents tried to explain that not following the regimen could have serious health consequences, but he

thought, `I'll do some of the things they say I should do, and that'll be enough. I feel fine--so those

problems won't happen to me." When his noncompliance led to his being rushed to the hospital with

severe abdominal pain and difficulty breathing, he finally believed the warnings he received, and he began to

adhere closely to his regimen.

Different individuals react differently to developing a chronic illness. Their reactions depend on many

factors, such as their coping skills and personalities, the social support they have, the nature and

consequences of their illnesses, and the impact of the illnesses on their daily functioning. At the very least,

having a chronic condition entails frequent impositions on the patients and their families. Chronically ill

people may suffer periodic episodes of feeling poorly and need to have regular medical checkups, restrict

their diets or other aspects of their life styles, or administer daily treatment, for instance. Many chronic

conditions entail more than just impositions-- they produce frequent pain or lead to disability or even

death.

This and the next coming lectures focus mainly on tertiary prevention for chronic illness-- to retard its

progression, prevent disability, and rehabilitate the person, physically and psychologically. We will examine

how people react to and cope with chronic health problems and what can be done to help these people

cope effectively.

The present lecture concentrates on health problems that are less likely to result in death but often lead to

disability. We will begin by discussing people's reactions to having a chronic condition, then we will

examine the experiences and needs of individuals living with various health problems, and then we will

consider psychosocial interventions to enhance patients' long-term adaptation to their conditions.

Our discussion in these lectures will address many questions that are of great concern to patients, to their

families and friends, and probably to you. How do individuals react after their initial shock of learning that

they have a chronic illness? What kinds of health problems usually involve the most difficult adjustments

for people? How do patients' chronic conditions impact on their families? What can families, friends, and

therapists do to help chronically ill people adapt effectively to their conditions?

Adjusting To a Chronic Illness

I felt like I'd been hit in the stomach by a sledgehammer--this is how many patients describe their first

reaction upon learning that they have a disabling or life-threatening illness. Questions without immediate

answers flash through their minds: Is the diagnosis right and, if so, what can we do about it? Will I be

disabled, disfigured, or in pain? Will I die? How soon will these consequences happen? What will happen to

my family? Do I have adequate medical and life insurance? Learning of a chronic health problem usually

comes as a great shock, and this is often the first reaction individuals experience when the physician tells

them the diagnosis.

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Initial Reactions on Having a Chronic Condition

By observing patients in rehabilitation and health settings, Franklin Shontz (1975) has described a sequence

of reactions people tend to exhibit following the diagnosis of a serious illness. This sequence of reactions is:

1. Shock--an emergency response, marked by three characteristics: {a) being stunned or bewildered, (b)

behaving in an automatic fashion, and (c) feeling detached from the situation, that is, feeling like being an

observer rather than a participant in the events that occur. The shock may last only a short while or may

continue for weeks, occurs to some degree in any crisis situation people experience, and it is likely to be

most pronounced when the crisis comes without warning.

2. Encounter--a phase that is marked by disorganized thinking and feelings of loss, grief, helplessness,

despair, and being overwhelmed by reality.

3. Retreat--a phase in which people tends to use avoidance strategies, such as denying either the existence

of the health problem or its implications. But then reality begins to intrude: the symptoms remain or get

worse, additional diagnoses confirm the original one, and it becomes clear that adjustments need to be

made. Using retreat as a "base of operation," patients tend to contact reality a little at a time until they reach

some form of adjustment to the health problem and its implications.

Do all individuals react in the ways Shontz has described when they are faced with such crises as being

diagnosed with a serious illness? No, but probably most do. For instance, when faced with a crisis, most

people react with shock initially, but other individuals may be "cool and collected, while others may be

"paralyzed" with anxiety or may become hysterical". Similarly, although many people with serious illnesses

feel extremely helpless and overwhelmed after the initial shock, others do dot. And many patients do not

rely heavily on avoidance strategies to cope with the stress caused by having a health problem.

People who use denial and other avoidance strategies do so to control their emotional responses to a

stressor, especially when they believe they can do nothing to change the situation. But the usefulness of this

approach has limits. Although using avoidance strategies often provides psychological benefits early in the

process of coping with health problems, excessive avoidance can soon become maladaptive to patients'

physical and psychological well-being.

For example, when hospitalized people receive information about their conditions and future risk factors,

those individuals who use avoidance strategies heavily, gain less information about their conditions than

those who use these strategies to a lesser degree. Patients often need to make major decisions about their

immediate treatment. How can they make these decisions rationally if they fail to take in the information

that the practitioners present to them? Later, they may need to take action to promote their recovery,

reduce the likelihood of future health problems, and adjust their lifestyles, social relationships, and means of

employment. What factors influence how people cope with their health problems? The next section

provides some answers to this question.

Influences on Coping with Health Crisis

Healthy people tend to take their health for granted. They expect to be able to carry out their daily activities

and social roles from one day to the next without substantial disruptions due to illness. When a serious

illness or injury occurs, their everyday life activities are disrupted. Regardless of whether the condition is

temporary or chronic, the first phases in coping with it are similar. But there is an important difference: in

contrast to the short-term disruptions that temporary illnesses cause, chronic health problems usually

require that patients and their families make permanent behavioral, social, and emotional adjustments.

When people learn that they have a serious chronic illness, the diagnosis quickly changes the way they view

themselves and their lives. The plans they had for tomorrow and for the next days, weeks, and year may be

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affected. Major plans and minor ones may change: Did they plan to go on a trip this weekend? They may

change their minds now. Did they plan to complete a college education, or enter a specific career field, or

get married and have children, or move to a new community when they retire? Some of these ideas for the

future may evaporate after the diagnosis.

As psychologists Richard Lazarus and Cohen have noted, because the idea of being healthy, able, and

having a normal physique is central to most people's image and evaluation, becoming ill can be a shock to a

persons sense of security and to his or her self-image. Not only does it threaten the customary view of

oneself, but it further underscores that one is indeed vulnerable; and that one's life may be changed in major

respects. As a result adjustment to an illness or injury which is life-threatening or potentially disabling may

require considerable coping effort. Potentially disabling or life-threatening conditions leave patients and

their families with many uncertainties, Often no one can tell for certain exactly what the course of the illness

will be.

The Crisis Theory

Why do some individuals cope differently from others after learning they have a chronic health problem?

Rudolf Moos (1986) has proposed the crisis theory, which describes factors that influence how people

adjust during a crisis, such as having an illness.

The diagram presents his conceptual model, showing that the outcome of the crisis-- or the adjustment the

person makes--depends on the coping process, which depends on three contributing influences: illness-

related factors, background and personal factors, and physical and social environmental factors. We will

look at these contributing influences, and then see how they affect the coping process the patient uses.

a) Illness-Related Factors

Some health problems present a greater threat to the person than others do--they may be more disabling,

disfiguring, painful, or life-threatening, for example. As you might expect, the greater the threats patients

perceive for any of these factors, the more difficulty they are likely to have coping with their conditions.

Adjusting to being disfigured can be extremely difficult, particularly when it involves the person's face.

Many individuals whose faces are badly scarred withdraw from social encounters, sometimes completely.

Often people who see the disfigurement react awkwardly, and some show feelings of revulsion. Even

children react more negatively to people's facial disfigurements than to injuries to other parts of the body,

such as when people are crippled or missing a limb.

Patients also have difficulty coping with illness- related factors that involve annoying or embarrassing

changes in bodily functioning or that draw attention to their conditions. People with some illnesses, for

instance, may need artificial devices for excreting fecal or urinary wastes. These devices may be noticeable

either visibly or by their odors, and many patients have exaggerated impressions of the social impact such

devices have.

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Other chronically ill people must treat their conditions with ointments that may have odors or equipment

that is visible or makes noise. Still others may experience periodic seizures or muscle spasms that can be

embarrassing. Many people with chronic illnesses feel self-conscious about their health problems--or even

stigmatized by them--and want to hide them from others.

Various other aspects of treatment regimens can make adjustment very difficult, too. Some treatments are

painful or involve medications that produce serious side effects--either by leading to additional health

problems or by interfering with the patient's daily functioning, such as by making the person immobile or

drowsy. Other regimens may have treatment schedules and time commitments that make it difficult for the

person to find or hold a job. Some regimens require patients and their families to make substantial changes

in their lifestyles, which they might resent and fail to carry out. Each of these factors can impair people's

adjustment to chronic health problems.

b) Background and Personal Factors

People who cope well with chronic health problems have the psychological and behavioral resources to

resolve the chronicity or `long-termness' of the situation, balance hope against despair and find purpose and

quality in life. Often, these people have hardy or resilient personalities that allow them to see a good side in

difficult situations.

People with chronic diseases who are resilient can often find purpose and quality in their lives, maintain

their self-esteem, and resist feeling helpless and hopeless.

The ways individuals cope with chronic health problems also depend on many other background and

personal factors, such as their age, gender, social class, philosophical or religious commitments, emotional

maturity and self-esteem.

With respect to gender differences, for instance, men are more likely than women to be "threatened by the

decreases in ambition, vigor, and physical prowess that often result from serious illness because, by

comparison with women, they are confident in the stability of their physical abilities and bodily functioning.

Having a chronic illness often means that the individual must take on a dependent and passive role for a

long period of time. For men, this can be especially difficult since it is inconsistent with the assertive and

independent roles they generally occupy in most societies of the world.

The timing of a health problem in the person's life span also affects the impact on him or her. In the case of

very young children, their limited cognitive abilities prevent them from understanding fully the nature of

their illnesses, the treatment regimens they must follow, and the long-term implications of their conditions.

Their concerns are likely to focus on any restrictions that are imposed on their lifestyles and activities, the

frightening medical procedures they experience, and possible separations from their parents. As children get

older and their comprehension improves they may be able to participate in making some decisions about

their treatment.

c) Physical and Social Environmental Factors

Many physical and social features of our environments can affect the way we adjust to chronic health

problems. The physical aspects of a hospital environment for instance, are usually very dull and confining

for patients, thereby depressing their general morale and mood. For some individuals, the home

environment may not be much better. Many patients have difficulty getting around their houses or

performing self-help tasks; such as buttoning clothes or opening food containers, and lack special

equipment or tools that can help them do these tasks and be more self-sufficient. These people's adjustment

to their health problems can be impaired as long as these situations persist.

The patient's social environment functions as a system, with the behavior of each person affecting the

others. The presence of social support, for example, generally helps patients and their families and friends

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cope with their illnesses. Individuals who live alone and have few friends or who have poor relationships

with the people they live with tend to adjust poorly to chronic health conditions. But it is also true that

sometimes people in a patient's social network may undermine effective coping by providing bad examples

or poor advice. The degree to which each member of the social system adjusts in constructive ways to the

illness affects the adjustment of the others.

The primary source of social support for children and most adults who are ill typically comes from their

immediate families. People in old age whose spouses are either deceased or unable to help are likely to

receive support mainly from their children, but also from siblings, friends, and neighbors. At almost any

age, patients may join support groups for people with specific medical problems. These groups can provide

informational and emotional support.

As the above given diagram depicts, crisis theory's three contributing influences are interrelated and can

modify each other. The patient's social class or cultural background, for instance, may affect his or her self-

consciousness about or access to special devices and equipment to promote self-sufficiency. These

contributing factors combine to influence the coping process the person uses to deal with the crisis.

We will talk about the coping process in adjusting to chronic illnesses in our next lecture. We will also talk

about the different chronic illnesses and their biopsychosocial impacts on patients.

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