The Concept Of Powerlessness In Patient Treatment Nursing Essay

I had a patient in Karwany-e-Hayat, who is 57 years old male with

diagnosis of Drug-induced psychosis. Admitted with aggression, irrelevant
talk, paranoid delusions and insight absent. He is living alone, divorced 30
years back, one daughter who got married 2 years back. He was addicted
of Cannabis (chars) from the age of 20 and continues it till his forties and
then left it and started taking nicotine cigarettes 3-4 per day. Patient stated
that I want my share in property but now I do not have control on situation.
I do not have any support who can help me or can fight for me because of
lack of strength to cope. Physically I also feel powerless as I am getting
older and unable to fight for my rights. I feel lack of control due to which I
could not be able to get my share from step-brothers and their wives
always behave negatively with me. They consider me as a substance
abuser and mentally ill which is actually I am not. Patient further stated
that I am thinking to go in court but I feel that they have power in society
which I do not have thats why I cant get my share by any means.
Anne Lee (2006) defines drug-induced psychosis as Psychotic symptoms
that arise during drug intoxication The reaction may re-exposure to the
drugs occurs (p.353). According to WHO report It is estimated that about
04 million people in Pakistan abusing different substances is heroin)
(para.4). This data predicts, on-going crisis on mental health of the people.
I took the concept of powerlessness on the basis of my patient scenario. It
is important to first understand the concept of power. Larsen and Lubkin
(2009) describe power as A personal resource inherent in all individuals,
and is the ability to influence what happens to ones self (p.256). Eriksons
second stage of psychosocial development, autonomy versus shame can
relate with the feelings of powerlessness as it involves the struggle for
personal control and separation from others. Lacking in this stage, might
lead to feelings of powerlessness in later life also.
Power reflects persons ability to achieve and struggle for desired outcome.
Powerlessness, as defined by Wilkinson (2005) is the perception that
ones own action will not significantly affect an outcome; a perceived (p.
386). Every individual experiences powerlessness in their life in some point
in time. Although people with physical illness experience powerlessness in
their daily life activity but, mentally ill client experience more than others
because of stigma associated with mental illness and not accepted by
society and disturbances in their thoughts process make this feeling worse.
As my patient has no control over his own situation rather control by people
around him.
Concept of hopelessness and powerlessness consider similar but both are
different. Carpenito-Moyet (2004) clarifies theses two concepts as A
hopelessness person sees no solution. A powerless person may
because of perceived lack of control and resources (p.207). Persistent
powerlessness can lead to hopelessness, which is more risk taking
behavior in which person do not see any options and consider self as
worthless and this might lead to self harm.

Powerlessness can be associated with physical, psychological or/and
social lack of control. Feeling of powerless due to any reason, strongly link
with the poor health outcome since it develop fatigue, grief and
hopelessness. People feel powerless due to their chronic physical
illnesses; some feels due to lack of psychosocial control and threatened to
their autonomy. There are factors or resources which lead to power and
lacking in any of these lead to powerlessness. Resources which retain
individual power discussed by Larsen and Lubkin (2009) that Individual
power resources include physical strength and physical reserve,
psychological stamina and social support, positive self-control, energy,
knowledge, motivation, and hope (p.258). If these power resources
affected, individual experience feelings of powerlessness. As my patients
physical endurance decreased, no family support present and less
motivated and positive to deal with situation around him. Failures of these
internal and external resources make him feel more powerless.
Feeling of lack of control over situation is so much personal to individual
and people are consider low when they feel powerless thats why they hide
their actual feeling because of fear of label as powerless. Powerlessness
can be assessing through subjective and objective findings. To assess
patients feeling of powerless and contributing factors, nurse should clearly
assess clients strength, resources and take time to listen and observe
patients objective and subjective feelings which lead to powerlessness. To
identify strengths of a client White and Roberts in (1993) given Personal
Control Model that links personal control with powerlessness. This model is
comprehensive and covers all aspects of powerlessness. It gives four types
of loss of control, associated with powerlessness. One is physiological loss
of control which is associated with biological changes, second is cognitive
loss of control which describe the inability to correctly interpret the effects
of a chronic illness and is categorized as sensory and appraisal loss of
control, third is environmental loss of control when individuals are unable to
control where they are and what they are experiencing and fourth is
decisional loss of control, is when person unable to make decisions for
themselves or for their care. After critically assessing patients feelings, I
come to know that he has loss of biological, environmental and decisional
control because he has no control and power over situation and people
around him and wasnt able to take any decision for himself and his
brothers are imposing their power on him and he cant even argue. My
patient also feels physically powerless whereas, cognitive ability was intact
as assess through mental status examination. From this, I analyze that it
was also observable that people who cant access their power and unable
to show it, develop feeling of frustration and showed their aggression.
Vogel-Scibilia, et al. (2009) talking about Eriksons stage 2 as Anger
externalized or internalized is a prominent feature of this stage and may
lead to the person coming into conflict with others or engaging in self-
damaging behavior (p.408). My patient was also become aggressive when
he felt powerless. By analyzing and integrated scenario and concept of
powerlessness with the model and Eriksons theory, I come to know that
powerlessness can poorly affect individuals overall health.
Braga & Cruz (2009) develop powerlessness assessment tool and stated
that The Powerlessness to assess for the selection and evaluation of
interventions (p.1062). Although it was used in western culture but, we can
also use it in our context with some modifications. As, this tool will help
deepen understanding, identifying and evaluating interventions of
powerlessness. Unfortunately, I was unable to implement this tool on my
patient because he was discharged.
On the basis of assessment findings of powerlessness in my patient,
planning phase come in which my goals are to explore patients feelings of
powerlessness, then motivates him towards developing autonomy to take
decision and sense of control over situation and environment.
Strategies for powerlessness divided into individual, group and institutional
level. Basic aim of all level of interventions is to make patient empower
enough to deal with the own situation and situation around him effectively.
Increase in power makes individual powerful enough to live in environment
with more abundant resources and rewards, able to attain their goals and
feel unrestrained by others.
Client and family level intervention plays crucial role in regaining power.
Diversional activity like music can be used as therapeutic manner for
diversion. This help patient clearly identify their feelings and foster
discussion of feelings. I involved patient in musical play activity with other
patients, through this I also utilized group level strategy. Empowering can
be done through focusing on other supports and resources rather than on
feeling overwhelmed by deficits. In my patient he has no family support but
still I try my best to explore other internal and external resources which can
help him to be independent and enhance empowerment. In second week, I
explore that he can do job if he gets and his uncle who has business and
might help him for job to earn for himself. Through this, I was able to
develop my patients strength to get back to his usual life in society.
Though he previously confesses lack of physical power but now motivated
towards autonomous. Other interventions are listening to individuals;
asking them to describe their experience, displaying kind and helpful
attitude and being approachable, respecting and fostering individualized
decision making. Sense of mastery is important to overcome clients
powerlessness by developing sense of control over threatening situation,
finding new sources of satisfaction and problem solving measures to
prevent similar stressful event. It is also important for individual to analyze
own response at the time of intense feeling of powerlessness and exploring
own positive strength rather only focusing on things which cant be handle.
Taw (2006) stated that For many people, the mutually supported and co-
ordinated exercise of power may have greater potential impact than
isolated and competitive instances of power to (p.38). Interventions for
both institutional and group level can be done by using self-determination
theory. This theory is base on three basic psychological needs; these are
competence, relatedness and autonomy. The need for competence help
individual to adapt new challenges. It stimulates adaptive and flexible
functioning in the context of changing demands. Relatedness is the
integration of the individual with the social world to develop sense of
belonging. For this I involved my patient in all group activities to motivate
towards power. Family should involved, as environment outside hospital
also matter but in my patient I was unable to implemented family level
interventions because nobody involved in his care, nor come to meet him.
Autonomy better helps to regulate own actions according to their needs
and capacities. Autonomous people will not develop powerlessness, which
can be achieved through supporting and acknowledging initiative, providing
choices for treatment and minimizing control environment around patient. I
had worked on this theory to help my patient empower enough in society.
At institutional level, health care team should follow these interventions
which I havent observed there. It is overall lacking in our health sector that
less attention is giving to mental health by government and by health care
settings.

Fewer researches are conducted for mental health in Pakistan; so I have
not found any relevant research on concept of powerlessness. I found a
study done in Israel by Ronel and Claridge (2003) said Violent behavior as
a sign of powerlessness and of being out of control, much resembling the
symptoms of substance abuse (p.62). Further stated that It is accepted
and even expected that men never admit to powerlessness or lack of
control (p.62). These words not only represent the culture addressing in
this article but also applicable to Pakistani culture where showing
powerlessness is not allowed in society and considering it disgraceful so,
feeling of powerlessness must come out in form of aggression, violent
behavior or going towards substance abuse.
Previously, I believed that powerlessness is only link with physical
weaknesses and only faced by patients but after reading this concept in
depth my prejudice become clear. I was able to integrate model and
theories which help in dealing and improving my patient control over
situation and regain their power back in society. I am glad after analyzing
my efforts that my patient realized his feelings of powerlessness and try to
cope with it by taking decision for him as he admitted that he will do work
after discharge. During writing this paper, I realized that most of the
interventions which I already implemented on patient are base on model
and theories.
Power is important aspect of a persons life without which survival become
difficult for individual. Powerlessness can be faced by everyone in any point
in life. Persistent feeling of powerlessness greatly affects not only mental
but also physical health. It should be deal at early level for better mental
health outcome. More researches is needed to assess the peoples
perspective and feeling of power and powerlessness and on evidence
based interventions


Read more: http://www.ukessays.com/essays/nursing/the-concept-of-
powerlessness-in-patient-treatment-nursing-essay.php#ixzz37GkpRICF



Powerlessness of the Chronically Ill Patient

Abstract
The purpose of this paper is to describe the experience of powerlessness,
and identify the nurses role in empowerment and advocacy for those in an
unrelenting ill state. In order to thoroughly comprehend a patients
experience of powerlessness, it is beneficial to gain a more complete
understanding of the situations that can lead to feelings of powerlessness
(Aujoulat, Luminet & Deccache, 2007). It was for this reason that a majority
of this paper was dedicated to describing the experience of 40 interviews of
chronically ill patients. The qualitative study showed that feelings of
powerlessness extended well beyond treatment-related issues. Participants
all conveyed that at some point or another, feelings of insecurity and loss of
social and personal identity intrude in their everyday lives. In the health
field, powerlessness is a result of ill health. Empowerment may therefore
be considered as a health enhancing process. Findings suggest that the
most impacting process of empowerment will occur when a patient comes
to terms with their threatened sense of security and identity, not only in
managing their treatment. Therefore, it was concluded that one of the most
important aspects of an empowering relationship might be to provide
reassurance and opportunities for self-exploration, not merely given
through treatment choice (Aujoulat, 2007). It is proven through the research
presented here that the relationship between a patient and nurse is
foundational to empowering patients in a powerless state.

Powerlessness of the Chronically Ill Patient
At some point in his or her disease progression, a chronically ill patient will
endure perceived or actual powerlessness. Powerlessness is defined as
the inability to affect an outcome; the inability to have agency in ones own
life (Miller, 2000). Chronic illness does not have a predictable course.
Patients are in and out of the hospitals for exacerbation of symptoms, side
effects of drugs, depletion of social support systems, and decline of
physiological stamina. The uncertainty of disease, fatigue, loss of
employment, social contacts, and clients inability to fulfill role expectations
all contribute to a feeling of powerlessness. The purpose of this paper is to
describe the experience of powerlessness, and identify the nurses role in
empowerment and advocacy for those in an unrelenting ill state.
Patient Experience and Reason for this Paper
There is a patient who has been on the cardiac floor at Wentworth
Douglass Hospital for three months. J.F. originally came in with an episode
of syncope due to hypoglycemia. At only 61 years if age, this lady had been
given the works in cardiac and respiratory disease. She was in
Congestive Heart Failure, has Peripheral Artery Disease, Diabetes,
Hypertension, Chronic Obstructive Pulmonary Disease, and Asthma.
Before being brought into the hospital, J.F. was living alone in an
apartment. Her boyfriend of 30 years passed in July, and she was very
distracted and depressed about this loss and not caring for her diabetic
needs the way she usually would. The hospital staff did not feel as though
she was in an adequate mental and emotional state to be on her own, and
was looking into guardianship. The legalities of the issue were taking a
substantial amount of time to sort out, and J.F. was not happy about her
circumstances in the least. She was insistent on going home to her
apartment, and frequently referred to the hospital as a jail in which she
was locked. From our first conversation, she did not seem to understand
why she was still in the hospital. As her nurse for the day, I was told not to
bring up guardianship with her because it caused her an undue amount of
emotional stress. J.F. was frustrated because no one would answer her
questions. To make matters worse, while in the hospital J.Fs Peripheral
Vascular Disease had taken a turn for the worse. Circulation to her feet
was now almost completely obstructed from atherosclerosis, and her toes
were beginning to turn purple. Her feet were killing her, and always cold.
This woman has lost control of her life on every level. Not only was her
chronic illness taking a toll on her physically, but also J.F. had just recently
lost her greatest support system. From what I observed, it did not seem as
though her children were very involved in her life, and were planning to
admit her into a living facility. All J.F. wanted to do was go home and tend
to her garden, one of the few joys she seemed to have left in life, but even
that had been taken away. J.F. was in a complete and utter state of
powerlessness. Throughout my clinical rotation I made sure to check in on
her. I did my best to be present and listen to J.F.s concerns, but it was
difficult not being able to give her the answers to her questions.
The Experience of Powerlessness
In order to thoroughly comprehend a patients experience of
powerlessness, it is beneficial to gain a more complete understanding of
the situations that can lead to feelings of powerlessness (Aujoulat, Luminet
& Deccache, 2007). In a qualitative study titled The Perspective of Patients
on Their Experience of Powerlessness, the authors conducted 40
interviews of patients with various chronic diseases to look for similarities in
their experience of powerlessness. The study showed that feelings of
powerlessness extended well beyond their treatment-related issues.
Participants all conveyed that at some point or another, feelings of
insecurity and loss of social and personal identity intrude in their everyday
lives (Auioulat et al., 2007).
Powerlessness Through Insecurity
While reading through these interviews, it became understandable how
insecurity can be a major factor in causing patient powerlessness.
Chronically ill patients are faced with many life-altering changes that at
times can be very unpredictable, leaving them out of control. When first
diagnosed with a chronic disease, patients are left feeling that they have
lost control of their own body. Fear and horror are experienced when one
first faces unexpectedly the manifestations of an incapacitating chronic
disease. (Auioulat et al., 2007, p. 777). Exacerbation of symptoms will not
always be predicted, and outbursts can catch a patient off his or her guard.
Anxiety and distress can also be an unpredictable result of being
chronically ill. This was certainly present in my patient at Wentworth
Douglass, as she became extremely overwhelmed by tears at the idea of
not being able to return home. Difficulty controlling emotions was evident in
this study as well. Two patients cried while talking about their life
limitations, and one had to take an anxiety relief medication while recalling
difficult events (Aujoulat et al., 2007, p. 777). Emotions present an
uncontrollable mechanism for coping with feelings of powerlessness in the
chronically ill.
Loss of control over time is significantly affected in both day-to-day and
future goals. What will take a healthy person a few minutes to complete in
the morning, may take hours for someone who is chronically ill. Getting
dressed, combing your hair, making breakfast, and even tying your shoes
can become a major feat. Time to focus on priorities is limited because of
the time a disease will drain from each day (Aujoulat et al., p 778).
Perception of time remaining to live is also changed. The prognosis of a
chronic disease may make a patient feel as though they do not have an
adequate amount of time to peruse their long-term dreams. One patient is
quoted saying There is no future. There was a time when I did not even
know what I would do the following day. It was impossible to make any
holiday plan. Life had changed to the extent that it was impossible to talk
with my husband about anything but my illness (Aujoulat et al., 2007, p.
779). The course of a patients disease will make them feel powerless over
the perceived loss of their present and future ambitions.
Many participants in the study discussed how becoming dependent on their
environment and support system made them feel as though they lost their
inner sense of control and confidence (Aujoulat et al., 2007). As I have read
multiple times in my nursing books, an unsafe home environment can
generate concern for patient safety. One patient explained how his disease
made him more dependent on the hospital environment, because his home
was not adapted to his needs. A persons disease will also make them
more dependent on anothers generosity to have access to stores and
facilities that had previously been in reach (Aujoulat et al., 2007). Feelings
of powerlessness are derived from the inability to maintain a normal life
without assisted living.
Powerlessness Through Loss of Identity
The second commonality found in a patients experience of powerlessness
is loss of identity. The findings presented two parts of a persons identity
that are challenged by chronic illness: the social dimension and personal
dimension (Aujoulat et al., 2007).
Patient interviews revealed that powerlessness was felt in the inability to fill
certain social roles that had previously brought a sense of meaning into
ones life. Being able to work appears to be an important part of a persons
social identity. For those who had not accepted their disease, work was
important to a sense of identity, but in a sense that as long as they were
able to work and hide their illness from co-workers, their sense of being
normal was kept. For others, their career was so deeply integrated into
who they were they could not bear to return with their illness. One woman
even explained that she would rather stay home than continue working
because she felt she was no longer the same person I feel I cannot be
100% myself with my colleagues in such conditions I refuse to show up
(Aujoulat et al., 2007, p. 780). Other participants experiences with chronic
illness led to changes in hobbies. Feeling as though they were not the
same was reason enough for them to stop a social activity. However, most
found that the greatest suffering was associated not being able to complete
a family role. One participant felt as though she has not been able to fully
be a grandmother because of the fear that she might drop her new
grandchild while trying to cradle the infant in her arms (Aujoulat et al.,
2007). Chronic disease can strip patients of social identity and sense of
belonging, leaving them powerless to function anymore as they previously
did.
Chronic illness also impedes on a persons self-image. Personal Identity is
attacked by both the perception of others, and ones own self esteem.
Some participants described having conflicting self-representations when
the image reflected by others did not portray their inner perception. Due to
physical changes, patients began to feel insecure about their bodies, which
was also hard to accept. Others struggled with feelings such as guilt,
shame, or jealousy, which are generally associated with low self-esteem
(Aujoulat et al., 2007). Stigmatizing representations, physical appearance,
and feelings of inadequacy all contribute to loss of personal identity and
powerlessness of the chronically ill patient.
Powerlessness vs. Empowerment
Powerlessness is defined by Freire (1973, cited by [Aujoulat]), as
occurring when an individual assumes the role of an object acted upon
by the environment, rather than a subject acting in and on the
environment. In the health field, powerlessness is a result of ill
health. Empowerment may therefore be considered as a health enhancing
process. (Aujoulat, dHoore, & Deccace, 2006).
A literature analysis of the term empowerment revealed that in the past
decade, the word has been poorly defined (Aujoulat et al., 2006). From a
clinical standpoint, the analysis found that there were two dimensions to the
process of patient-empowerment: an inter-personal dimension and an intra-
personal dimension. Inter-personal was reflected through the provider-
patient interaction, and intra-personal from the within the patient. In the
provider-patient interaction, empowerment is considered a process of
communication and education in which knowledge, values and power are
shared (Aujoulat et al., 2007, p. 15). From the patients point of view,
empowerment is a process of personal growth. The first definition,
empowerment through interaction, suggests that power is bestowed upon
someone, and the second definition, empowerment through personal
transformation, suggests that it is generated within the patient alone.
(Aujoulat et al., 2006)
Is appears as though the experience of powerlessness through loss of
security and loss of identity directly correlate to the inter-personal and intra-
personal aspects of patient-empowerment found in this analysis. Findings
from the qualitative interviews suggested that the most impacting process
of empowerment will occur when a patient comes to terms with their
threatened sense of security and identity, not only in managing their
treatment. Therefore, it was concluded that one of the most important
aspects of an empowering relationship might not be found in providing
immediate choice and self-determination, but instead to provide
reassurance and opportunities for self-exploration instead (Aujoulat, 2007).
At the crossroads of these two articles, it seems that combating
powerlessness is facilitated through empowerment within a caring nurse-
patient relationship. It is not merely given through treatment choice, but in
an internal process that may be co-created within a trusting partnership.
Powerlessness and the Healthcare Power
Structure
Powerlessness of a chronically ill patient becomes most evident in
an acute care setting.
Upon arrival, clothes are stripped from a person, and replaced with a
johnny and wristband that displays name, date of birth, and patient
identification number. This alone is very symbolic of a persons experience
of powerlessness within the healthcare power structure.
The healthcare system is described as perpetuating vulnerability of the
chronically ill person. Fragmented care is received in an acute setting,
leaving little time for individual focus on those with chronically ill conditions
that need a more long-term management approach. The patients voice
becomes ignored by healthcare professionals, or quieted by the acute, fast-
paced treatment that is geared towards discharge. Procedures and
language become an issue, leaving patients confused and unable to be
active participants in their care (Hummel, 2009). Not only have they lost
control of their health and self identity, but are dominated by scientific
expertise and technology. It would appear that in such a setting, the
concept of a patient as a powerless individual in his or her care provides a
strong need for patient advocacy.
In a study conducted to gain nurses opinions on patient advocacy,
agreement was found in that patient advocacy was a nurses responsibility
because nurses have the closest physical and physiological contact with a
patient. Nurses provide continuity of care in the acute setting, and know
patients better and in a different, more intimate way than other healthcare
professionals (Davis, Konishi, & Tahiro, 2003). Patients and their families,
who are also vulnerable to the acute hospital setting, need someone to
advocate for them when they cannot speak for themselves or when others
do not hear their voice. The nurse-patient relationship becomes the bridge
between patient powerlessness and the healthcare power structure.
Powerlessness: A Shift in Perspectives
It is evident that a nurse-patient relationship plays a vital role in
empowering chronically ill patients, both in and outside of the hospital
setting. Research has shown that the experience of powerlessness is not
best countered through involving the patient in treatment decisions. Rather,
through facilitating an internal empowerment separate from the physical
limitations that chronic disease produce. Within a caring relationship,
nurses can encourage their patients to take hold of a positive perspective
despite their circumstances.
The Shifting Perspectives Model of Chronic Illness was developed through
metastudy of 292 qualitative research reports pertaining to chronic illness.
This model shows living with chronic illness as an ongoing shifting process
in which people swing between a perspective of powerlessness and control
(Paterson, 2001). They are shifted on the basis of whether their illness or
wellness is the focus or foreground of the illness experience (Paterson,
2001, p. 23). With illness in the foreground, perspective is defined by the
sick, suffering, loss, and burden of living with a chronic disease. It is seen
as destructive to self and others. The wellness in the foreground, the
chronic disease presents a new possibility for meaningful change in
relationships. Attempt is made to separate self-identity and the identity that
is imposed by the illness (Paterson, 2001).
The shift between perspectives can be the result of any number of
physiological or circumstantial interruptions. Some factors that may initiate
a shift from wellness to illness in the foreground may be exacerbations that
cause loss of control, disease-related stigma, and interactions with others
that emphasize dependence. Factors that stimulate a shift from illness to
wellness in the foreground include social support, an invested caregiver,
hope, and humor (Paternson, 2001). This model provides a wonderful
outline for nurses to focus their therapeutic and holistic nursing techniques
in counseling chronically ill patients through their perceived and actual
powerlessness.
Summary and Conclusion
In this paper we have covered the experience of powerless from
patient perspective, and empowerment through relationship centered care.
It seems as though with the technology, nursing shortage, and fast-paced
care settings, the heart of nursing has been stretched over the years.
However, it is proven through the research presented here that the
relationship between a patient and nurse is foundational to empowering
patients in a powerless state.
As I reflect on my experience with J.F., I realize that there must have been
a reason for her current circumstances. Legally, the hospital would not
have been able to keep her as a patient if it was not in her best interest. I
did not however, agree with the way she was left in the dark for months
about her future. Instead of being empowered through nursing care, J.F.
was avoided. She was left powerless in the decision making process, and
emotionally as well. Nurses cannot always change patient circumstances,
but they can encourage a change in perspective that allows for internal
growth and separation of self from disease.
With this information in mind, I feel compelled to bring nursing care back to
the basics. Relationship is the basis of nursing care. The simplicity of a
listening ear, caring touch, smile, and invested advocate will have the
greatest impact on chronically ill patients experience of powerlessness
throughout their disease progression. I hope that the evidence of an
impactful, caring nurse-patient relationship will encourage my colleagues to
change the face of powerlessness in the next generation of nursing care.










COPING WITH CHRONIC ILLNESS
(This is adapted from the book After The Diagnosis by Dr. JoAnn
LeMaistre.
Copyright 1985, 1993, and 1999 by JoAnn LeMaistre.)

JoAnn Le Maistre received her Ph.D. in clinical psychology, delivered a
daughter, and learned she had multiple sclerosis all within the period of a
few months. Dr. LeMaistre has developed a successful practice counseling
patients and their families. She is a sought-after speaker, lecturer, and
teacher. Her books, After The Diagnosis, and the hardbound
edition, Beyond Rage, have helped thousands of chronic illness patients,
their families, and health care providers to cope effectively. Her daughter
has now graduated from college. And Dr. LeMaistre has learned to live a
full life, in spite of the handicaps of her MS. She is an inspirational example
of what it means to be able-hearted when you can no longer be able-
bodied.

Traditionally, the experience of serious illness has been approached in two
ways: (1) a gloomy perspective of resignation, self-denial, and
helplessness, or (2) a Pollyanna approach that denies altogether that there
has been a real trauma. Both of these perspectives distort and disguise the
reality of chronic illness.
The first perspective views the chronically ill person as a failure. This is the
patient who does not respond to the "miracle" of modern medicine, and
somehow the lack of recovery is often perceived as the patient's fault. This
attitude of blame accounts for some of the worst psychological abuses of
patients by health practitioners and caretakers, an attitude typified by the
too-frequently heard statement, "Stop complaining. You simply must
adjust." Unfortunately, the sick person may also adopt this punishing
attitude toward himself or herself. Sadly, the word "adjust" too often means
"resign," "settle for less than a desirable existence," and "surrender." At its
worst, "adjust" is just another way of saying "You are now a nonperson
without the right to experience strong passions, desires, or fierce and
unyielding hope." All the anger and blame inherent in this attitude is
misdirected: the patient rather than the disease becomes the target.
The Pollyanna approach is typified by -- and fueled by -- personal stories or
testimonials of complete recovery from extreme illness or disabling
conditions. These stories tug at the heartstrings and catch the fancy of all
who read them. Besides creating false hope by overplaying the likelihood of
complete recovery, these stories consistently underplay the sadness and
feelings of worthlessness that are part of the legacy of any physical or
emotional trauma.
Sometimes, it is useful in social situations to present yourself as a
Pollyanna. When meeting new people and situations, it may be an
advantage for you to let others think you have mastered your disease. The
anxiety of other people is reduced by not having to confront illness. The
danger is that this Pollyanna image may create a barrier between you and
the people who can offer real help.
The resignation viewpoint holds little hope; the Pollyanna viewpoint holds
little reality.
The approach I propose took shape as my own understanding developed.
My experience as a patient, observer, and psychotherapist has allowed me
to see the many ways in which people creatively adapt and use their
individual internal powers of wholeness (the sense of being emotionally
intact) to reduce the destructive effects of severe physical limitations and
accompanying depression, rage, and fear. The wellness approach I present
stresses both the subjective experiences of loss and your responsibility for
looking outward to reestablish quality in your life.
Central to wellness is the concept of adaptation -- the flexible, creative use
of resources to maximize your choices and experiences of mastery. This is
the key to creating and sustaining a sense of inner tranquility in the face of
difficult realities. There is no need to deny grim facts of existence or to
pretend to others that all is well when inside there is little except torment.
To be psychologically well while physically sick involves the belief that your
personal worth transcends physical limitations; you need positive self-
esteem for true adaptation. This belief in your self-worth rarely emerges
until what you have lost and grieved for stands second in importance to
precious moments of inner peace and joy.
Each stage in the progress toward wellness involves loss, grief, and
acknowledgment of internal pain. During difficult times, emotional pain can
engulf your life. All sense of time and proportion fade. The scope and
intensity of the psychological pain fluctuates day to day. At times, it carries
you closer to invaluable inner resources. At times, like a dangerous
undertow, this pain drags you far from your recognizable self. It may seem
that you have no reason for living or that you are living only to experience
pain. Even so, the reason for living is life. The incentive for becoming
psychologically well is the potential for the future.
Illness is an emotionally as well as physically depriving experience. It can
do lasting harm by threatening a person's sense of well-being,
competence, and feelings of productivity. At their worst, emotional
reactions to illness may culminate in the feeling that life is meaningless. I
do not share this belief; but I recognize how stress can make you feel this
way.
Illness is a process, and like all processes it has different stages with
different characteristics. We will discuss the stages below. The stages can
occur in varying orders; often they are repeated. If a sick person lacks
emotional support or a necessary feistiness, the process can stagnate, and
one may be mired in one or another phase of the emotional transitions
taking place. The emotional process begun by illness is a highly varied and
individual one. Not everyone gets bogged down. Not everyone experiences
all the stages discussed in the following sections. The stages are not part
of a once-through program, but are repeated as symptoms recur or losses
come about.
The level of adaptation is an upward spiral in which coping mechanisms,
learned one at a time, can be combined with strategies learned at other
times to make each bout of illness less emotionally upheaving.
How people react to chronic illness depends on many conditions. Three
deserve note. The first is the severity of the illness. The very sick must put
all their energy into healing and may not have the luxury of energy left over
for emotional growth.
The second is the social support available. If you are willing to ask for help
and you have a wide support network, you'll have an easier time than if you
are isolated.
The third condition is the preillness personality of the person. If you have
always been pretty resilient, you are likely to have resilience in coping with
the illness.
The emotional trauma of chronic physical illness is caused by loss of a
valued level of functioning, such as the ability to drive or dance, for
example. The chronically ill person not only suffers the loss of immediate
competency but is deprived of an expectable future. No one's future is ever
guaranteed, but most people become accustomed to looking at the odds; if
I invest my energies in a particular direction, I can be reasonably certain I'll
reach a desired goal in that direction. When illness intervenes, all past
efforts may seem irrelevant -- and in fact they may be.
In the face of such losses, to experience fear, anger, depression, and
anxiety is normal. It would be abnormal to deny that your health and your
life had changed for the worse. Serious emotional difficulties are more often
the lot of people who do not acknowledge the emotional stress they feel
and thereby bottle up depression or anxiety until these feelings are so
powerful they break through their defenses. By the time an emotion
becomes this powerful, it is much more difficult to survive its impact without
severe scarring.
Is there anything that can help overcome the displacement and depression
caused by physical loss and the loss of goals and dreams? I think the
answer is an unqualified YES!
Goal-oriented striving, any experience of mastery, any outside
acknowledgment of competence, a well-tuned sense of humor, any
experience of joy, and the constant striving toward an inner state of
tranquility are the aids that help overcome the displacement and
depression of chronic physical illness.
These aids are of critical importance in the stages of the ongoing emotional
process. I identify these stages as crisis, isolation, anger, reconstruction,
intermittent depression, and renewal.
These are good summary categories for the whirl of emotions triggered by
illness and we will take up each stage in turn, although in the course of an
individual illness they may not always proceed in this order.
CRISIS
In the crisis stage, the patient is seriously ill and very frightened. Both
psychologically and physically he or she has a decreased ability to respond
to others. The sick person's energies are directed inward toward healing,
and controlling panic. The patient is often too sick to even be frightened.
Events are often confused. Time is distorted. Disorientation is common. At
these times we fall back on our innate biological ability to heal. The support
network, on the other hand, is feeling a highly stressful increase in anxiety,
especially as it must carry the full responsibility for arranging for medical
care, covering finances, and seeing that children's lives, if children are
involved, can go on with a minimum of disruption. The family's anxiety can
be energizing. The family may feel a need, sometimes an obligation, to be
highly supportive of the patient.
By and large, everyone responds well in a crisis. Everyone knows the
patient is terribly ill. And they respond. Unfortunately, those most affected
by the patient's illness do not always receive the support and help they
need at this time.
Friends sometimes respond by showering the sick person with cards,
flowers, and get-well-soon wishes. Unfortunately, much of this is
misdirected. The very ill person often cannot appreciate these signs of
concern and affection. Patients often feel burdened by all the thank-you
notes they cannot send. Friends can often do more by helping the family
and other members of the support network to deal with the medical system,
the incoming phone calls, and to give direct support when it becomes clear
that the idea of "get well soon" has no relevance to chronic illness.
During the crisis stage almost all of the patient's energy and attention are
focused on responding to the physical onslaught of the illness. Surviving is
the primary concern.
In addition, the patient and the family must cope with the fear of an
unknown and unknowable future. It is all too clear that the comfortable
patterns of the past have been shattered. It is not clear at all what may lie
ahead.
ISOLATION
In time, the acute nature of the illness may abate. But total recovery does
not occur, and the illness persists. There is a dawning awareness of
everyone's part that the situation has become a chronic one. There will be
no full recovery. There is so much uncertainty about the future that the
patient may not be able to sleep at night and may seem restless and
distracted during the day. The lack of an expectable future constitutes a
major assault on one's self-image.
The patient's anxiety often produces a stiffness or frozenness in dealings
with others and oneself. There is a belief, usually partially justified, that no
one can understand the devastation of the losses. Isolation most troubles
patients who have been the most independent.
The family has often exhausted itself during the acute crisis stage. Family
members may become aware that they are angry, fearful, and disgusted
about the sick member's situation. Both patient and family members retreat
into themselves and their thoughts, now haunted by the knowledge that life
may never be the same.
Friends also tend to give out at this point -- the idea of chronic illness is
really terrifying to most people. After an initial burst of energy, some friends
may find it too overwhelming a personal struggle to continue having contact
with either patient or family. Some patients have been devastated by an
apparent lack of concern shown by people for whom they care. I say
apparent because often failure to contact the patient means that friends
may care but don't know how to act.
This leads to a thorny question. How comfortable are you in asking for
help? What does it mean to you to have to ask for help?
These questions begin to surface during the isolation stage, but actually
they are part of everyday living for most chronically ill people. To feel really
comfortable allowing others to help you is an art that must be learned and
practiced. It is difficult to understand that relying on other people when it is
necessary does not indicate weakness or failure. One of the emotional
barriers to asking for help is a strong feeling of guilt about having a disease
that makes one need help. During the isolation stage, patients look inward
and experience many negative feelings about themselves.
In the isolation stage open communications are vital. Blame must not play a
part. Talking about feelings is very important. Communication and sharing
are ways to break the isolation.
ANGER
The sick person has been suffering severe upset, terror, anxiety, and
helplessness. Add to this the sense of injustice, unfairness, and
senselessness of being struck down by a disease, and the result may be a
rage reaction of tremendous proportions. Often the target of this rage is the
patient himself or herself. The ultimate, most dangerous, expression of this
rage at self is suicide. The commonly experienced feelings of despair may
result in contemplation of suicide.
There are two reasons why the patient targets himself or herself for these
feelings of anger and despair. First, it is almost impossible to be furious
with fate; there is no external opponent. In order to provide some meaning
for what has happened, many people irrationally conclude they have
bought disease on themselves by being faulty or wicked in some way. It is
difficult to keep clear that it is the disease that introduced the disruption into
one's life.
Another reason for suicidal thoughts is that illness breeds a sense of
helplessness. The chronic disease cannot be wished away. The disabilities
are there to struggle with every day, and the threat of a major recurrence or
increase in symptoms may be a constant anxiety tucked away not far from
consciousness. With the feeling that the underlying problem cannot be
solved and the belief that it is the patient's fault, many patients suffer
intense unhappiness. Sadly, the patient's feeling of self-blame is greatly
reinforced by society. Often families are unable to help because they are
angry at the patient. The changes in their life style are directly attributed to
the patient and not to the patient's illness. Even supposedly neutral medical
personnel may be furious with the patient for having a chronic condition
they cannot cure. This anger directed at the patient from all sides is
psychologically understandable but it is very destructive.
The flirtation with suicide, the patient's worst hazard of the anger stage, is a
statement of the extent of one's rage with oneself and with those one cares
about.
Another serious problem of the anger stage is the strain on the family.
Families who fare better during this stage understand that the sick person
is not the same entity as the disease and they see that the whole family is
in this predicament together and are committed to coming out of it as well
as possible. Family members need to devise ways to nurture and
adequately support each other in order to cope with both the anxiety and
the practical life changes accompanying chronic illness.
Anger is the stage most hazardous to your emotional well-being. It is also
where most people get trapped. Fear and anger are disruptive emotions
egendered by a sense of loss of control. Take back control in small steps.
The basic reasons for the anger, in most cases cannot be avoided. It does
no good to assign blame. The response must become task-oriented.
"Today I will walk the length of my room, or call a friend, or answer one
inquiry." Striving toward a goal, even in small doses, is an antidote to
anger. Patients, family, friends, and helpers should all focus on the
strengths that remain, on the accomplishments that can still be achieved.
This basic rule is a key to dealing with anger.
RECONSTRUCTION
The sick person may now be feeling much stronger physically or may have
had enough time to begin mastering new living skills. Important decisions
or new social contacts may be in the picture. What is common is a growing
sense of safety based on new competencies. Moods are happier and the
difficulties seem a bit further away. The sick person is learning the
possibilities and limits of the new competencies. Friends are selected on
how well they react to the fact of illness. The family establishes new
routines -- or it dissolves.
What exactly has been reconstructed? Certainly it is not life like it was
before. Instead, it is a reconstruction of the sense of oneself as a cohesive,
intact entity. The reconstruction takes on many concrete aspects, such as
the development of new skills, but the most important value is emotional.
When a customary pattern of living has been shattered by illness, the
patient fears that he or she is longer recognizable as a whole being. It is
the reemergence of a positive self-image that constitutes reconstruction.
Often people do well for a few weeks and then are devastated by some
incident. But each experience with trusting and succeeding is a building
block for the next step of reconstruction.
INTERMITTENT DEPRESSION
Now that everything is looking brighter, everyone is tempted to relax and
may, therefore, be caught off guard when a significant depression recurs.
The elation associated with new skills can give way to new feelings of
despair as the patient recalls how much simpler it was to do routine things
the old, preillness way. Nostalgia and grief may combine to produce
sadness and discouragement.
Many people know exactly when they expect to hit these rough spots.
Medical appointments and anniversaries are notable examples. Seeing a
doctor, who confirms your intuition that your condition is not improving or is
worse, often leads to depression. So may the third anniversary of having to
give up the car, the first anniversary of a divorce, the time of the year the
physical problems first occurred -- the list is endless. It may be best to seek
counseling during these difficult times as a way of shortening their duration
and providing new understanding of what all the feelings of loss are
attached to. New understanding brings new resilience; it does not make the
losses go away.
Intermittent depressions seem to combine two feelings. One is the
awareness of loss of function that occurs several times a day in the course
of ordinary living. But clearly, an amputee does not become depressed
each time there is a reminder of the inability to walk normally. There is a
second element involved. If the awareness of loss arouses a distinct image
of what life would be like if the amputation had not occurred, and if this
fantasy has strong emotional meaning for the person, depression is very
likely. This image of how you would be without the illness I call the phantom
psyche.
The phantom psyche is usually not far from consciousness. It is the self-
punishing mechanism whereby the chronically ill person continually erodes
his or her own self of self-worth and competence. "If only I didn't have this
arthritis [or whatever illness] I could still be mountain-climbing [or whatever
activity]." "If only" statements are the bread and butter of the phantom
psyche. They contain harsh judgments of worthlessness. In a happier
mood, you might experience the same feeling of loss, but say to yourself, "I
really miss mountain climbing, but at least I can take a walk today."
When the phantom stalks, the soul is uneasy. Doctors and friends often
mistake the desperate pain of knowing one's hopeful fantasies will not be
realized for self-pity. "Just stop feeling sorry for yourself" so completely
misses the point that it is tragic. It is very difficult to have a sense of self
when you're depressed and are afraid that you'll never again be of value to
yourself and others.
Self-esteem increases proportionately to successful experiences of
independence and purpose, whether the success is remembering what
time to take a certain medication or walking better after months of physical
therapy. The phantom psyche -- those unrealistic expectations you have for
yourself -- cannot compete with the heady gratification of hard-won
success. If family, friends, and medical personnel can appreciate the
triumph in being able to struggle, you feel even more triumphant. Well-
wishers too often make the mistake of praising a sick person for progress
without acknowledging how difficult is the ongoing battle against the inertia
of chronic disease.
We all have periods when we feel overmatched and not up to the struggle.
But as long as we pay attention to the struggle, we will get through the day.
We flounder when we set unrealistic standards, or cannot grieve for what
has been lost, or cannot start each day afresh. Depression can be tackled
despite the physical complications that try to drag us down.
RENEWAL
The losses, and the sadness they cause, never go away entirely. There is a
sense of lingering regret for all the capacities that have been lost. A person
who has mastered the technique of using a wheelchair can feel very proud
of this achievement and know full well that this device is essential for
retaining an active life. But the person does not have to like it.
It is not necessary to like or to resign yourself to the compromises you need
to make to get on with living. It is only necessary to acknowledge that
changes in life style and skills have to be made. Acknowledging that your
skills are different from your preillness days is not the same as "adjusting"
to illness. There is no surrender involved, only growth -- the creation of new
options through new means.
The creation of renewal comes from the experiences that teach us not to
waste the present on fearing the future.
The truly handicapped of the world are those who suffer from emotional
limitations that make it impossible to use the capacities and controls they
possess. If you have a chronic disease, you need not be emotionally
handicapped if you continually strive to be able-hearted. Able-heartedness
is within the grasp of all of us. I don't think of able-heartedness as a
permanent, static state, however. Developing and maintaining this quality is
a process that ebbs and flows, depending on how helpless you feel. Even if
you feel in the grip of hopelessness, you are behaving in an able-hearted
way by any expression of interest in another. Shared interest and
compassion is what establishes meaning and purpose in life.
When you feel discouraged, you feel all alone -- and there is some truth to
this feeling. But in many important ways you are not alone. There are
hundreds of people in your city who have similar feelings at times. If
disturbing thoughts wake you in the night, know there are other struggling
with their pain. No one can share your unique experience, but there is
kinship and a strength among all of us who are no longer able-bodied.
There are some positive coping skills that are required by unavoidable
health changes. These are summarized below.
Make Your Expectations Realistic
The most important aspect of making expectations realistic is the
recognition that they are time-limited. "What can I do now on the basis of
the way I feel at this moment?" If you have two minutes, what are you going
to do? I counsel people to check with themselves to find out what
they want to do. Illness can make you feel that you must surrender all
goals, all wishes. But that is not necessary.
Make your expectations run like this. "Within the limits of my physical ability
I will do whatever it is I want to do for as long as I can."
Approach Problems Actively
A second essential skill is an active approach to problems. What is an
active approach? It consists of defining the problem and determining the
outcome you want. It involves trying to ensure that any energy expended
constitutes a step toward the solution. Rarely does it constitute the
complete solution. The admission "I cannot do something" is often the first
step in solving a problem realistically.
Define what you want and then use every ounce of creativity you possess
to determine how you are going to make it happen. Creativity
is not impaired by illness. When you define the problem you figure out how
many facets there are to achieving some kind of resolution, and then you
expect yourself to make only that part of the effort that is realistic. What this
means is that you need a broader sense of community. There are going to
be a number of things you cannot do alone. Your dreams do not have to
change. How they are realized will probably change. The creative, flexible
use of your energies and creativity to get as much satisfaction as possible
is your mission.
Seek Appropriate Help
The next skill to learn is to ask for appropriate help. It is not a moral
weakness to ask for assistance, but many can probably recognize the
tendency to regard asking for help as shameful. It is a limitation if one does
not know how to determine whether or not assistance makes sense. It is a
limitation if one is harsh or angry with the helper. Asking for help can
become a more and more graceful skill. It is certainly not the first choice for
people who would rather do everything themselves, but it should be your
choice if you are going to pursue what you need and want -- when you
cannot do it alone.
If you have a hard time asking for help, consider what you would do if you
were fully able-bodied and a friend of yours had your particular problem to
solve. What would you do? Do you see yourself denying help as you gear
others might deny you? Would you be upset if your friend asked for the
specific help that was required? Chances are you would feel fine about
helping out if you could. You would just do it. Try to be as kind to yourself
as you would be to another when it comes to asking for help.
Handle Your Anger
The next skill involves learning how to become emotionally efficient and
energy conscious. Energy is a tremendous problem for those with chronic
illness. There is none to waste. Some of the most wasteful expenditures of
energy are for resentment and anger. These emotions are not bad in
themselves, but they do wear you out.
If you are angry, it helps to have some consciousness of what you are
angry about, and whether you want to angry about that. Sometimes you will
want to be angry because that is the appropriate response. Sometimes you
will want to be angry because it is more efficient to be openly angry than to
deal with bitterness or other forms of calcified anger. The better you get at
being direct about anger early, the more energy you save and the more
efficient you are. Surprisingly, many people do not know how to recognize
their own irritation or anger. If you are feeling irritated, it might be helpful to
be assertive, even if in the short run you feel uncomfortable.
Participate
Another skill that is especially restorative for those with illness is to put
positive energy back into the world. You can do this with family, friends,
with self-help groups connected with your illness, or with community
groups. Put your talents, your compassion, your knowledge, and your
experience out there in a way that can benefit others. Be a good friend to
yourself and don't overlook your finer qualities.
If asking for help is a skill you possess, then there is even more
constructive energy available to invest in the world around you. Obviously,
one of the things illness can do is to constrict your social world. Sometimes,
this leads to the perception that there is nothing you can do for others. That
is just flat-out wrong. If you have exhausted your own resources in looking
for ways to participate, you can call organizations that are concerned with
your illness, like the Arthritis Foundation or the National Multiple Sclerosis
Society, as well as other national and local self-help and research
organizations. They can offer suggestions, and may have specific ways
that you can help them. People volunteer because it feels good.
Live In The Present
Another skill, that is a challenge to learn, is to look neither too far backward
or too far forward. If you are only looking backward, you are giving up on
yourself emotionally. Your losses are major issues, but losses do not get
people through one day at a time or one day after another. Losses are not
a good reason for living. If you use all your emotional energy considering
how things were before the illness and comparing it to how things are now,
you are being very self-punishing. If you sense this going on, you need to
be extremely aggressive about rejecting this.
Illness does not diminish one's humanity. Mobility and physical comfort
decrease with illness. Fear and worry increase. But illness does not
diminish humanity. Be humane to yourself. Avoid dwelling on how good
things were I the past compared to now. Also avoid distant future fantasies.
There is no way to know what will happen some years hence. And you
know, there never has been a way to know the future. If you are not stuck
in the past or tormented by distant future images of what should be, you
have the opportunity to manage this day with awareness. Living in the
moment with consciousness, patience, compassion, and appreciation for
yourself and others lets you get on in a creative way, in spite of the pain of
your losses.
Cherish The Good Times
The last skill I would commend to you is to pay attention to the positives.
This can only be done if you have already mastered the skill of living fully in
the present moment. You go through every twenty-four hours with enough
of yourself available to the world that when something positive happens
you let it in. There was a rainbow yesterday. There may have been an
interesting interaction between you and the grocery clerk, or you had a
close, warm exchange with someone you care about. These are the kind of
positive moments I mean.
These are moments that need to be framed and stored to be used on days
that are much harder. If we are in a quagmire of negative emotion, we can
turn anything into proof that there are only painful things in the world. This
final skill is learning how to hold onto the positives, to cherish them
sufficiently that they do not drop out of your repertory of significant life
events.
Once you notice the positives, how do hold on to them? The best way is to
slow down -- to use relaxation, meditation, and your own internal capacity
for joy to feel that moment inside. Let it resonate within. This allows your
emotional commitment to be fully focused on the process of life. Be as
emotionally able-hearted as possible, despite physical limitations.
What all these coping skills have in common is that they are daily
necessities. You don't just get them down pat once and then forget about
them. You need to use these skills frequently. Every day is going to give
you something different to try to manage. You need these well-practiced
skills to succeed.
The circumstances you face may at times be miserable. Nothing can alter
this reality. Trust that you will learn from each stage and from each cycle
through the stages. Learn to trust others enough so that when the situation
seems unbearably stressful, outside counseling and psychotherapy can be
sought. Renewal cannot always be attained without help.
If these ideas have reached you at any level, you have already begun the
process of renewal. You are adapting in the face of great difficulties. There
is no right way to come through the ravages of unavoidable health
changes. But I have tried to show you ways to remain an active agent in
your own life.
You are not alone. None of us is alone. We may not know each other yet,
but there are kindred spirits. A single treasured personal relationship
makes the path bearable.
I wish you a safe and thoughtful journey on what is truly a road of hope. I
travel it with you. You have a companion and you have hope.















Millions of individuals are challenged with debilitating and perhaps long
term illness for which there may not be a cure. Many of these people may
never revisit their previously well state of being; physically, psychologically
and socially. The life of someone with a chronic medical condition is
impacted in ways that a healthy person cannot begin to comprehend.
There is tremendous impact to the social, recreational and occupational
functioning of someone with illness. Relationships are often compromised
and strained as the effects on the family can be as great, but different, than
that of the person who is ill. The emotional toll on someone with the
challenges of an ongoing illness can be overwhelming. Mood-related
symptoms, anxiety, depression, anger, irritability, helplessness and
hopelessness are emotions that all those with illness have experienced. In
addition, the person with the illness is in a constant state of grieving
aspects of themselves that they may not reclaim. Coping with the ongoing
effects of illness requires a constant reorganizing and redefinition of self
based on the changed reality imposed by the illness.

may feel a sense of powerlessness over their life due to the ravages of the
illness. It is imperative that the person with illness recognizes that there
are ways that he/she can regain a sense of mastery over aspects of their
life, in spite of the medical condition that they are facing every day. With
guidance, you can learn ways to attend to the areas of life that still remain
under your conscious control. Learning ways to take charge of that which
you still have power over creates a sense of well-being that transcends the
grasp that the illness has had on you, your attitudes and your approach to
life.
Coping With a Chronic Illness
There are a broad range of chronic medical conditions. Some may be
potentially life-threatening, such as cancer, heart disease and AIDS. Some
chronic conditions are associated with the aging process and though
understood may still have a steady progression. Conditions, like diabetes
or high blood pressure are somewhat predictable and manageable. Other
health conditions that are less understood, intermittent in their
symptomatology and therefore unpredictable are frustrating to the
individual and to the medical professional. It is with this latter group of
illnesses, such as Chronic Fatigue Syndrome and Fibromyalgia that the
bulk of this section on illness is aimed at addressing. With any chronic
illness, the individual is going to have significant psychological reactions
and be challenged to cope in ways that he/she may not have the skills for.
Psychologists can facilitate the process of learning to cope with the various
stages that a person experiences throughout their illness. It is expected
that there will be significant challenges and setbacks along the way;
therefore, adaptation to a disease process is an ongoing journey.
Psychological Impact of Chronic Illness
The way in which an individual is affected psychologically is dependent on
many factors. Some of these include the nature of the illness itself, its
severity and the treatment involved. Other factors impacting an individuals
ability to cope have to do with their personality, circumstances of their life
prior to the illness and the level of social support that they have access to.
Regardless of these factors, all individuals must go through various stages
as they attempt to adjust and cope to the realities of their chronic
condition.
Initially there may be shock, denial and disbelief that something is even
wrong. The persistence of symptoms however makes it difficult to ignore.
Resistance to the real changes occurring in the body cause a person to
push themselves beyond what their body can do, creating more exhaustion
and crashing while they attempt to recover. Feelings of anxiety and fear
occur in response to the uncertainty of the future; and the possible loss of
goals unrealized contributes to sadness, depression and grief. Further
losses come in the form of having to relinquish roles and responsibilities
which lead to feelings of inadequacy and guilt. One becomes sensitive as
well to the potential burden that loved ones now may feel, leading to more
shame and possibly resentment and anger.
Abandoning a sense of prior independence takes a toll on ones self-
esteem, self-worth and self-image; a real identity crisis ensues. As a result
of increased feelings of dependency there are emotions around the loss of
status, power and control that overwhelm a once healthy, capable and
functioning individual. There can be stigma associated with disability and
as a result of others reactions, including friends and family; there can be
an increase in withdrawal and isolation. The individual becomes affected
by feelings of abandonment, rejection and loneliness. Compounding all of
these possible reactions is the blame and self-punishment imposed on the
self for having their condition in the first place. In addition to trying to
manage the actual illness on a daily basis, the profound nature of these
emotional consequences not surprisingly can lead to feelings of
helplessness and hopelessness. Fortunately there are ways that a person
can learn to navigate through all the complex reactions and adjustments
that they are facing as they go through the various stages of the illness.
Support and the Impact on Family & Friends
During the various stages and cycles of the illness, family and friends are
profoundly affected and may end up needing their own support. They too
are trying to adjust to the multitude of changes that have occurred as their
loved one became ill. For some there are significant changes in roles and
responsibilities which can overwhelm the well person and contribute to
feelings of powerless to the one chronically ill. For many, lifestyle and
social functioning is dramatically altered; sometimes creating sadness and
perhaps anger over the loss of the person before they became ill. Intimacy
issues and learning how to maintain friendships and companionship can be
challenging.
There is often fear and anxiety over the chronicity of the changes and the
drain perhaps to resources; emotional, physical and financial. There may
be resentment and the caregiver may feel alone and isolated as most of the
attention goes to meeting the needs of the chronically ill person. The ability
of family and friends to support is affected by their ability to deal with
ongoing stress, their flexibility in the face of uncertainty and being able to
effectively communicate. It is as important for primary caregivers to seek
the support and guidance they need to assist them in their own journey with
the chronically ill.
Coping Strategies for Transcending Illness
At some point in the cycle of your illness you come to recognize the
chronicity of your symptoms and the realization that you must learn to
cope long term with the effects and changes to your self and life overall. A
significant objective in the management of your condition is to regain a
sense of personal control over your self and your life. The following areas
can assist in the achievement of this goal.
Educate yourself: Information is power and educating yourself during
this time is an important way to take charge of your situation. This is
a time to take full responsibility for the management of your health
and it means knowing your choices and making decisions for your
care.
Environmental changes: Learning ways to organize your home and
work setting to make the tasks of daily living easier is a practical way
to feel in charge.
Access resources: Review financial issues, home care, insurance
and disability claims, support groups, educational seminars, books,
audiotapes.
Symptom management: Follow through on recommended treatment,
investigate additional or alternate forms of treatment, be informed
about medication, and decrease overuse of narcotics and self-
medicating (alcohol or substance abuse), proper nutrition,
recommended exercise program.
Body Awareness: Become familiar with activities that trigger
symptoms, learn the art of pacing; that is, discovering what your
body tells you about where its limits are. Be willing to gently
challenge your perceived limitations because there is also a tendency
to protect in an attempt to avoid flare-ups. You will need to regularly
test your own limits to assess where you are at.
Communication: It is important for self-management to have the
skills that effectively communicate your needs to others. These
people may be health care professionals, insurance representatives,
friends, family and significant others.
Re-examine roles and responsibilities: The need to be able to assert
oneself is necessary in order to successfully redefine boundaries and
limits on what you need and what you can do.
Value clarification: Evaluate what is important to you in this moment
and feel good about honoring that. Recognize where and how you
use your energy; emotionally and physically and decide if how you
are doing so supports your well-being.
Goal-setting: Providing structure to your day through some basic
planning and setting realistic goals contributes to a greater sense of
purpose.
Rebuild confidence: As you find ways to empower yourself ensure
that you acknowledge and validate all your successes; big and small.
Reinforce the ways that you are still able versus emphasizing how
you feel dis-abled.
Challenge Negative Thought Patterns and Reframing: We are what
we think. This is perhaps one of the most important coping skills to
learn in order to successfully manage and transcend the impact of
chronic illness. Changing your perspective has profound
consequences to your emotional well-being, which in turn affects your
body in a positive way as well.
Attention-Control: This is a self-management technique that teaches
you to deliberately shift attention from one thing to another. It
includes distraction away from your symptoms by engaging in
alternate and positive activities. Learning to distract yourself
internally is also a successful way to lead your mind away from pain
and other symptoms
Identify Stressors and Relax: Stress worsens the experience of
symptoms and leads to increased tension which negatively impacts
the body. Learning deep breathing methods, full body relaxation,
meditation, yoga, tai chi and other ways to relax the body are good
for your overall state of well-being.
Discover new interests: Finding new activities through which you can
experience pleasure is important to successful coping. Find ways to
make yourself laugh; since humor is healing.
Identify and Resolve Emotions: Emotions from the past and present
may wash over you daily. Getting professional assistance to work
through these complex reactions is imperative to your state of
wellness. Since the mind and body are interconnected, internalizing
emotions has a negative impact on the body. We do not come into
this life prepared to handle the challenges of an illness and yet we
are extremely harsh on ourselves for the emotions that we naturally
feel as a result. It is important to learn to let go of blame, self-
punishment and have compassion for yourself and your body.
Letting Go: The capacity to truly transcend your illness and empower
you toward a feeling of inner peace requires the difficult task of
letting-go. Recognizing where your attitudes and behaviors may be
fostering dependence, resistance and self-sabotage is important to
being able to let go. Acceptance that one must relinquish the old
definition of self and life prior to becoming ill allows an opening to
redefine and create new meaning and purpose beyond your
illness.
Integrate Illness Experience into a new Meaningful Life
You have the opportunity to gain considerable insight into yourself and your
life as you move through and cope with the emotional and physical aspects
of your illness. Having a chronic condition means that you will have
setbacks and move back and forth into times where you cope better than at
other times. Part of the goal of coping well, is to regain compassion and
respect for your self and your life as you redefine, reexamine and
reconstruct aspect of the new you. You will still want to hold on to aspects
of your pre-illness self that you still value, however, will accept that certain
attachments to the past in fact hold you back rather than move you
forward. Clinging to old expectations of your self expends energy that is
much better spent on living in the moment perhaps engaged in positive
activities or simply spending time with people that you care about.
Transcending your illness means that you acknowledge that you are more
than your body and its symptoms; life can have purpose and meaning
beyond the limitations that your body has imposed. There are many
aspects of life and living well that do not involve the body. Exploring these
areas expands your learning and creativity which in turn helps to reinforce
self-esteem and self-respect. Successful integration requires a level of
acceptance of the realities of your illness. It does not require the adoption
of a passive sick role; that is, relinquishing responsibility or giving in. Our
beliefs reinforce our reality. Rather than seeing yourself free of illness,
challenge yourself to see that there is more to your life than your dis-ease.
Perhaps it is time to revisit and have gratitude for those things and people
that you may have unintentionally taken for granted. Living in the moment
allows one to pay attention to simple joys and find value out of everyday
experiences.
The nature of a chronic illness is that it is a process. Arriving at a place of
strength psychologically doesnt mean that it is easy to stay there. You will
constantly be challenged to revisit and incorporate the coping strategies
that assist you in working through particular emotions and issues as they
appear. You will find that you recycle many of the emotions that you
thought you had previously dealt with. The constant adjustments required
and the grieving of losses along the way is part of a journey requiring
ongoing attention. Having strategies to cope however, allow you to return
to the place again where you are committed to living your best life, in spite
of your limitations. Transcending your illness means that it doesnt define
you; rather, you decide how you want to create a life of meaning and
purpose that brings you pride in spite of being ill. It is empowering to
create goals and be self-directed when most aspects of an illness attempt
to disempower you. Establishing a sense of purpose can inspire and move
you forward with passion even while enduring the challenges of an illness.
Just think of Christopher Reeve or people that you know who seem to
paradoxically be living a more meaningful life since having a diagnosis of
an illness.
It takes tremendous courage, persistence, perseverance, determination
and strength to maintain a fighting spirit in the face of so many challenges.
It is important to acknowledge yourself for these qualities. It is equally
important to have compassion and forgiveness toward yourself when you
hit a rough spot. Your personal worth and value extends beyond what you
may feel you can handle during times of incredible struggle. In fact, the
quality of your life is comprised of not only what you do and how you feel,
but strongly by what you think. Recognize that healthy living depends on
your attitude and choices whether you have an illness or not. Creating an
intention to live as meaningful and satisfying a life as you possibly can
awards you a personal sense of self-efficacy and a belief in yourself that
you can get through another day.
Spirituality & Chronic Illness
No one can ever be prepared for the tremendous impact, disruption and
despair that are brought about by a chronic medical condition. For some
people, it creates an inner struggle around beliefs and faith. You may feel
abandoned, angry and confused as you try to search for answers to the
why questions. For others, turning to spiritual practice, meditation or
prayer can offer solace and considerable comfort during times when
nothing else makes sense. Some believe that there is a larger purpose
and meaning behind the illness and look for ways to find gratitude for their
life still. Whatever your beliefs may be it is helpful to know that you are not
alone in the challenges that you face.
Please contact SoulSpring Counselling for information on how you can
receive guidance and support as you move through the various stages of
your health challenge toward a place of inner peace and meaning.
http://www.soulspringcounselling.com/illness.htm
Deborah R. Lain BA, MSC Registered Psychologist