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R. Lanier Britsch and Terrance
D. Olson, eds., Counseling: A Guide to Helping Others, 2 vols. [Salt Lake
City: Deseret Book Co., 1983-1985], Volume 2 © 2001, Deseret Book, GospeLink
2001, Used by permission
21
Chronic Illness
William G. Dyer
Remember in things the poor and the needy, the sick and the afflicted, for he
that doeth not these things, the same is not my disciple." (D&C 52:40.)
A central part of the message of the Savior has always been to look after the
sick and afflicted. The parable of the Good Samaritan examined the response of
the hated Samaritan who attended to the wounds of an afflicted Jew. For such
service, the good Samaritan has become the embodiment of the person who truly
loves his neighbor as himself.
Most members of the Church and most bishoprics, Relief Society presidencies,
home and visiting teachers, and neighbors probably feel with some justification
that they respond immediately and generously whenever there is illness in the
ward or branch. Whenever a mother has a new baby, someone has an operation, or
serious illness or injury strikes a member, the other members rally around and
attend to the needs of the sick person and his family. However, a number of sick
people are neglected, ignored, mistreated, and misunderstood. These are those
who suffer from chronic illness, who have illness or disabilities that persist,
that do not get better. A chronic illness is a great trial for the sufferer, who
often feels great emotional stress, for the debilitating condition goes on and
on without an apparent end. The chronially ill person, his family, his
neighbors, and his church leaders often need to learn how to cope with this type
of situation so they may all be able to bear their infirmities.
Normal and Chronic Cycles of Illness
Illness or injury come to all of us, and we usually expect to follow a
pattern that is characteristic of most illness. Figure 1 shows this pattern. The
person has an illness and falls from the path of normal health. Then comes a
period of diagnosis and treatment followed by a period of convalescence.
Finally, the person returns to good health again.
The person who is ill and his family, friends, and neighbors are used to this
cycle and generally move in to help during the illness, treatment, and
convalescence, assuming that at some point the person will return to normal
health and that their assistance will no longer be needed. However, in the case
of the chronically ill, this cycle does not occur. Figure 2 shows the pattern of
chronic illness. The person becomes ill and loses his normal health. He too goes
through a period of treatment and sometimes a form of convalescence, but for a
number of reasons, depending on the illness, the person does not return to a
condition of normal health but continues in a fluctuating pattern of chronic ill
health. The person may have periods when he feels better or worse, but at no
time does he ever return to complete good health.
Unfortunately, family members, friends, and neighbors do not know how to
respond to this unfamiliar pattern, and usually they shift their attention away
from the chronically ill person as others with the more normal cycle of sickness
occupy their attention. It is at this point that the person with the chronic
illness feels that he no longer gets the support, understanding, and assistance
he needs to help him endure his continuing pain, depression, and anxiety.
The Patient
The person who finds himself in persistent poor health must make adjustments.
Since he, too, is used to the normal cycle of illness, he often cannot accept
his illness but, in an increasing state of anxiety, frantically turns from one
doctor, treatment, or proposed cure to another. This may be interspersed with
periods of depression and apathy where the patient feels completely hopeless and
wants to "give up." It is at these times that the patient especially
needs support and encouragement from family, friends, and Church leaders.
The patient may also fluctuate between two opposing ways of handling his
illness. He may say, "I'm not going to let this get me down; I'm going to
try to live my normal life." He may then try to assume normal duties in the
home, community, or Church, but he really is not well. People surrounding him
are, in a sense, relieved that the person seems to be well and they then ease
their support, let the patient take over his former duties, and are glad he has
returned to "normal." But the person is not back to normal. He still
feels sick. He feels a need to have people understand him and be sensitive to
his struggle to live a normal life, but he is distressed to find that others now
assume he is well and let him take over all the old responsibilities he really
is not capable of handling.
Or, the chronically ill person may find that the only way to keep from being
reburdened with all the old duties is to make his illness seem worse than it
really is. If he stays in bed and appears to suffer, then others can accept the
person as being ill and will move in to help.
One chronically ill mother reported that her teenage children would help
wonderfully around the house if she stayed in bed, but if she got up and tried
to work, the children expected her to assume all her duties again. It is as
though people think that one is either sick or well. But, there are intermediate
degrees of sickness and health, and the person in that twilight zone, along with
his family, friends, and others, needs to learn how to live in that intermediate
state.
As a person lives with illness from year to year, regaining his health
naturally becomes a major preoccupation. His treatment and symptoms become the
center of his thoughts and actions. Others often cannot understand this
single-mindedness and may begin to avoid the patient. The patient himself may
need to try to plan other interests and activities that broaden his world and
allow for a wider range of discussion and interaction with others.
Something as ordinary as everyday greetings may create a problem for someone
who is chronically ill. Someone greeting him may naturally ask, "How are
you doing?" The sick person doesn't want to complain, so he responds with
something like "I'm all right" or "I'm feeling better." This
seems to satisfy the inquirer and is also what he may went to hear, for most
people want to hear that people who are ill are improving. A more honest
response from the patient would be, "I'm about the same, but I appreciate
your concern."
Also, a patient may appear well, and may even feel well for a time, but his
appearance may be at variance with his actual feelings. One bishop remarked that
a man in his ward worked five days a week but never came to church or filled an
assignment. The bishop felt for a long time that the man, who claimed to be a
faithful Church member, was really something of a hypocrite. This bishop,
however, spent time finding out more about this man and discovered that he was
chronically ill but mustered all of his strength to go to work to make a living
for his family and then used the weekend to recoup his meager energies. What
this man needed was understanding and support, not condemnation, and when the
bishop finally understood the situation, he was able to give the man and his
family the help they needed.
Many chronically ill people find it difficult to live with their illness.
They fight it, hate it, and give in to it; they feel abused and picked on,
abandoned, and rejected by everyone, including the Lord. Learning to cope with
their condition is a major challenge. It is possible to learn from long-term
illness, to grow with the burden rather than be diminished by it. However, only
a person who has had such an affliction can really appreciate the struggle of
another.
The Family of the Chronically Ill
When illness strikes a person, the other family members move in, and,
expecting the normal cycle of illness to occur, plan rather unconsciously to
handle an illness of limited duration. They assume the extra duties, wait on the
sick person, and see this as a challenge and a responsibility that they are
willing to handle. If the illness becomes chronic, however, the family is often
not prepared. Strains and disturbances may occur. Sometimes there are subtle and
hidden feelings of resentment toward the sick person, a kind of blaming him for
not getting better and allowing the whole family to return to normal. The sick
person often senses this resentment and tries to reduce that by struggling to
resume a normal role, which often results in even worse health. Sometimes family
members slip into a pattern of isolating and ignoring the chronically ill
person. They cope with the problem by blocking it out of their minds and even
gear their activities to avoid and ignore the ill person in hopes of reducing
some of their distress and strain. This may leave the sick person feeling
unwanted, rejected, and alienated from the family. This, in turn, contributes to
the stress in the family.
This is a difficult situation, for with the loss of the normal functioning of
any family member, role relationships are disturbed and a new balance must be
established in the family. If the mother or father is ill, someone else must
pick up their duties in addition to providing care for the sick person. When a
son or daughter is ill, the family loses whatever their contribution was to the
family activity and work pattern. This shifts the person's responsibilities to
other family members.
The family needs to establish a new set of duties and expectations about what
each family member will need to do to accommodate the illness of the sick
person. A daughter may have to prepare family meals; a son may have to do the
washing; and the father may have to be the family chauffeur and shopper—all in
addition to their regular activities and with the expectation that this will
continue indefinitely. This is a great deal to ask of family members, and it
takes a great deal of understanding, discipline, discussion, love, and faith to
accept this new way of life. Chronic illness can disrupt and divide a family, or
it can provide the family with an opportunity to grow in understanding,
patience, sacrifice, and love for one another.
Friends, Neighbors, and Church Leaders and Members
Surrounding the chronically ill person and his family is the social world of
friends, neighbors, and the Church. These can either be a source of support and
help or a source of feelings of neglect, rejection, misunderstanding, and
frustration. Most people help at the beginning of the illness. But when the
person does not get better, they become confused and slowly begin to shift their
attention away from the person. This loss of support often makes the sufferer
feel neglected and rejected. Many chronically ill people who suddenly develop a
more visible health problem like a heart attack or have an operation find that
other people begin to respond with warmth and support that had been denied
during the chronic period.
Since chronic illnesses are foreign to the experience of most people, it is
often unclear to them how to respond. Many chronic sufferers have emotional
illness that others find upsetting or difficult to respond to.
People in a ward or branch who wish to help bear the infirmities of those who
are ill might consider the following ideas:
1. Survey the ward through home teachers and visiting teachers and identify
all those who have a chronic illness
any physical, mental, or emotional condition that leaves the person at a
level of health below what could be called normal.
2. Discuss in some detail with the person how his illness is affecting him
and his family and find out what his needs are.
Don't just thoughtlessly ask, "Is there anything I can do for you?"
Some people do not like organized branch or ward assistance—they prefer only
spontaneous support. Others welcome an organized and sustained support program.
3. Make short visits. Many patients get tired or overstimulated from long
visits. A cheery visit for twenty to thirty minutes is best.
4. Send a card or note or make a short phone call to the sick person. These
remembrances are always appreciated.
5. Look for ways to help with young children. Take them to your home to bake
cookies or make candy, and send the goodies home with them. Take them to church
activities or provide transportation to various functions.
6. Send a cake, a loaf of bread, a bowl of cherries, or some tomatoes. The
feeling of being remembered is more important than the gift.
7. Tape record a sacrament meeting or Sunday School class and take it to the
patient.
8. Under the direction of the bishop, take the person the sacrament.
9. When the patient does get out to a Church function, visit with them
pleasantly. Avoid saying things that will make the person feel pressured, such
as "We hope you can come every time now."
10. Older people who have a rather constant state of lowered health and
energy might like young people to visit and share their fun and spirit.
11. Drop off an article, clipping, or book that you find uplifting, or stop
and share a special experience you have had.
12. Don't brag or recount to the patient all of your accomplishments,
travels, and so on. Illness tends to reduce the patient's feelings of competence
and self-worth, and he isn't helped by hearing how good, important, or busy you
are.
13. It is important that the bishop or branch president visit the patient and
acknowledge and accept the illness. One bishop was heard to brush off the
condition of a chronically ill person by saying, "It's all in your
head." That may be true, but illness in "the head" can result in
as much or even more suffering than physical pain. Mental illness is not exempt
from our compassionate response.
14. Don't ask, "What can I do to help?" People do not like to have
to ask for support. Be sensitive and imaginative and go ahead and do
something rather than just ask.
There is Hope with Endurance
One sister who was afflicted with multiple sclerosis reported how being
remembered by others and being treated "normally" was important to
her. When asked what her greatest source of strength was, she said it had come
from the gospel, either from spoken words of leaders or from the scriptures. She
noted two very comforting and strengthening articles: "Sweet Are the Uses
of Adversity," by A. Theodore Tuttle (Improvement Era, December
1967, p. 47), and "The Crucible of Adversity and Affliction," by
Marion G. Romney (Improvement Era, December 1969, p. 66). Once when she
was feeling low, President Joseph Fielding Smith had given a talk in dune
Conference on the MIA theme for that year: "Search diligently, pray always,
and be believing, and all things shall work together for your good, if ye walk
uprightly." (D&C 90:24.) She noted, "President Smith said this
doesn't mean that we'll necessarily be free from trials and difficulties, but
that if we do what is right the Lord will turn our trials and difficulties into
blessings. The Lord has done just that for me. Sometimes I see it more clearly
than at other times, but I do believe he makes all things work together for our
good."
Chronic illness may be difficult to bear, but it can be used as a source of
strength. At a time when many of the Brethren who have counseled us regarding
adversity are now suffering from it, we might redouble our efforts toward our
neighbors who are similarly suffering. We can help the chronically ill endure to
the end of their adversity. We thus become a part of those things that will work
together for their good.
About the Author
Dr. William G. Dyer, past dean of the School of Management at Brigham Young
University, received his bachelor's and master's degrees from BYU and his Ph.D.
from the University of Wisconsin. He is a noted authority on behavior change,
having been consultant or trainer for numerous large corporations. Dr. Dyer is
the author of thirteen books and monographs and over sixty-five articles.
In the Church he has served on the general board of the Sunday School, as a
bishop, a high councilor, and a missionary, and in many teaching positions.
He and his wife, Bonnie, are the parents of five children.
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