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 that’s why I can’t 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 one’s self” (p.256). Erikson’s

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 person’s ability to achieve and struggle for desired outcome.

Powerlessness, as defined by Wilkinson (2005) is “the perception that

one’s 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 patient’s

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 that’s why they hide

their actual feeling because of fear of label as ‘powerless’. Powerlessness

can be assessing through subjective and objective findings. To assess

patient’s feeling of powerless and contributing factors, nurse should clearly

assess client’s strength, resources and take time to listen and observe

patient’s 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 patient’s 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 wasn’t able to take any decision for himself and his

brothers are imposing their power on him and he can’t 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 can’t access their power and unable

to show it, develop feeling of frustration and showed their aggression.

Vogel-Scibilia, et al. (2009) talking about Erikson’s 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 Erikson’s theory, I come to know that

powerlessness can poorly affect individual’s 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 patient’s 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 patient’s 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 client’s

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 can’t 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 haven’t 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 person’s 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

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Powerlessness of the Chronically Ill Patient

 

Abstract

The purpose of this paper is to describe the experience of powerlessness, and identify the nurse’s role in empowerment and advocacy for those in an unrelenting ill state. In order to thoroughly comprehend a patient’s 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 client’s 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 nurse’s 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.F’s 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 patient’s 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 patient’s 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 person’s disease will also make them more dependent on another’s 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 patient’s experience of powerlessness is loss of identity. The findings presented two parts of a person’s 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 person’s 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 person’s 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, d’Hoore, & 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 patient’s 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 person’s 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 patient’s 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 nurse’s 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 Ó 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 one’s 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 doesn’t 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 doesn’t 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