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LYMPHEDEMA PSYCHOLOGICAL COPING

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Your Emotions and Self Image with Lymphedema

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The Emotional Impact

Little is said about the psychological affects of lymphedema, despite its profound impact on the person dealing with it.

Lymphedema can cause pronounced social inhibitions because of being self conscious, it can cause depression, embarrassment, disfigurement, feelings of hopelessness and helplessness. You often go through tremendous life style changes and feel worthless and useless. It can cause sexual dysfunction as both male and female lymphedema patients can acquire genital lymphedema.

You go through periods of struggling with feeling humiliation, despair and you can experience terrific pain.

You also go through a lot of anger. Anger at why you have this, why the medical world knows so little about this condition and sometimes seems to care little either.

For cancer patients, its a double impact. While you are dealing with cancer, its side affects, whether or not you are going to live,
the affects of radiation and chemo... now all of a sudden your body starts swelling out of control. What is going on???

If you are going through these emotions, please don't be afraid to let your doctor know. You may need professional help to get through this. You may also find a lot of comfort and encouragement in joining a support group. Contact the National Lymphedema Foundation to see if there is one in your area.

You may also wish to join an online support group. There are several mentioned in our site. As a member, myself, I have found a wonderful and supportive family of fellow lymphedema people. I cannot tell you just how much my new family has come to mean to me and how much I have gained by being a part of these groups.

THERE IS HOPE........AND YOU ARE NOT ALONE!!

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Psychosocial Considerations

There are multiple psychosocial and adjustment issues faced by cancer patients and survivors with lymphedema. Because lymphedema is disfiguring and sometimes painful and disabling, it can create problems in many aspects of functioning, e.g., psychological, physical, and sexual. Until relatively recently, however, inadequate attention has been directed toward its psychosocial impact. Several articles have noted that women who develop lymphedema following treatment for breast cancer encounter more difficulties in each of these aspects than women who do not develop the condition after such treatment.[19-21] Additionally, because the treatments for upper extremity lymphedema can be uncomfortable, arduous, and time-consuming, the presence of psychological difficulties can significantly interfere with treatment efforts. Upper extremity pain in women following breast cancer can have a highly complex differential diagnosis. One study has highlighted the deleterious impact of pain on quality of life and coping in patients with upper extremity lymphedema.[22]

Another study highlighted the factors associated with psychological distress within a group of patients who developed upper extremity lymphedema after breast cancer treatment. Risk factors for poor adjustment to the condition include poor social support, use of an avoidant and reclusive style of coping (some women seek to avoid social situations in which their lymphedema causes a constant reminder of their cancer experience), and the presence of pain of any intensity.[19] Group and individual counseling that provides specific information about preventive measures, the role of diet and exercise, advice for selecting comfortable and flattering clothing, and emotional support can be helpful to women coping with lymphedema.

http://www.cancer.gov/cancerinfo/pdq/supportivecare/lymphedema/healthprofessional/

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Coping With A 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.

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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.

http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html

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Coping with Long Term Physical Illness and Pain

http://www.brandeis.edu/pcc/coping.html

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Coping with Illness and Disability

We have put together a collection of links to bring you hope and help. Knowing that we are not alone in our suffering and have someone to share it with, can make a very big difference

http://www.soon.org.uk/problems/disability.htm

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Coping with Illness

Notes from a lecture by Dr. K.J. McKee

http://www.shef.ac.uk/~smtw/2000/bs/bs0426e.htm

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How Do We Feel About Our Bodies

http://www.disabledsex.org/articles/monthly/bodyimage.php

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Who Me? Self-Esteem For People With Disabilities

University of Wisconsin Counseling Services

http://www.uwec.edu/counsel/pubs/disabilities.htm

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Body Beautiful/Body Perfect - Challenging the Status Quo

Where Do Women With Disabilities Fit In?

http://www.beautyworlds.com/beautydisability.htm

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Acceptance of Illness

http://www.cwru.edu/pubs/cwrumag/winter2001/departments/explorations/acceptance.shtml
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Acceptance of an Illness is Not a Surrender

Vijai P. Sharma, Ph.D 
 
Replace negative thoughts with acceptance thoughts such as, "I don't like being sick, but I can live with it."  We wrongly fear that acceptance of our illness amounts to surrendering to it.  Acceptance does not mean that we have given up fighting or that we are inviting the illness to stick with us for ever.  On the contrary, when you accept your  illness, it frees your powers to work on recovery and rehabilitation that were earlier being used to protest and fight against the disease.  An acceptance of the disease may even release the powers that were dormant which you had no idea you had.  It is the the freed up powers and the dormant powers that enable a person to "ride the tiger."  

 What we regard as limitations and restrictions caused by an illness may lie, to a great extent, in our belief system, rather than in our body.  Our beliefs create our reality, and the mind and body take that to be the truth without further questioning.  We act as if that is true.  Our actions provide confirmation of our beliefs.  Take for example a man with a severe heart condition who is unable to hold down the job he had previously handled for years.  Physical tasks, such as chopping the wood in the winter or tilling the yard in spring have become not only arduous, but tortuous.  In addition to this his sexual drive plummets to zero.  He begins to think about himself in such terms as, "I am not a man anymore," which then results in chronic depression.  

 The man in the above example now has depression to deal with, in addition to his heart condition.  Such a man is heading for total disability.  However, if he alters his belief about himself by affirming, "I am not able to do some things just now, but I am going to build from ground up and do what I can."   In this way he may be able to ride that proverbial tiger, called long-term or life-long illness.  

 Accept that you are 100% responsible for what happens to you.  Freeze the blame at point zero.  However, accept help from others with a gracious "thank you."  You don't have to do it alone.  Give others a chance to help you.  Learn practical tips on how to manage your symptoms and emotions on a daily basis.  Grow a plant.  Marvel at a sunset.  Such enjoyments are offered to all of us by  Mother Nature free of charge.  Seek out things that you can enjoy.  Find your "heroes," that is, people who are coping successfully from disabling and painful conditions.    Appreciate your assets and realize that it could be worse.  Look at those with compassion who have it worse than you and look for opportunities to help them cope with their illness.        

 Lack of acceptance leads to out of control emotions.  Some people who are chronically ill begin to take their anger out on their spouse and children.  In many cases, it is men who refuse to accept help for their out-of-control emotions.  Their spouses are compelled to seek help for themselves so that they can somehow cope with the situation at home.  It is unfortunate that for some, accepting help equals defeat.  For some medical patients who are going through an emotional turmoil, the suggestion of psychological help amounts to adding insult to injury.  A physician is hard put to recommend psychological help lest it should offend the patient.   Perhaps, patients in such a situation feel that the control of their body is already taken away from them by their illness, and "now my doctor is telling me that I have also lost my mind."  

 Unfortunately, many of us still view psychological help as a threat rather than a help.  According to them, psychological help is only for the people who are losing their mind or are already "crazy."   A lady who was losing her sight due to diabetic complications was having a difficult time in dealing with the fact that she was at the verge of total blindness.  She became severely anxious, depressed, and angry.  She didn't care whether she lived or died.  She overdosed on her medication.  At this point her doctor recommended psychological help.  The lady declined the suggestion saying, "I am almost blind but I am not crazy."  

 This lady was having nightmares which consisted of getting lost, stumbling in the dark and being mugged and beaten up on the street.  She didn't want to get out of her house or go to a store even with an escort.  She was afraid of stumbling over something and falling down, and thus "make a fool of myself."  She was obsessed that her escort would make a mistake in navigating her or not support her firmly enough to help her walk steadily.  These are all very normal concerns when a person must make a major shift from a "seeing" person to a "sensing" person--from being self-reliant to other-dependent. However, the dependence on others may be only a temporary phase.  When you accept help from others, you can concentrate your powers in learning how to use other senses and resources.  Agrippa in 1510 said, "So great a power is there of the soul upon the body, that whichever way the soul imagines and dreams that it goes, thither doth it lead the body." 

http://www.mindpub.com/art193.htm

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The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

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Chronic illness - questions and answers

http://www.irishhealth.com/?level=4&id=455

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Disability, Body Image and Self-Esteem

Some further links

http://sexsupport.org/BodyImageResources.html

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Depression Caused by Chronic Illness

A chronic illness is an illness that lasts for a very long time and usually cannot be cured completely. However, chronic illnesses can often be controlled through diet, exercise, and certain medicines. Examples of chronic illnesses include diabetes, heart disease, arthritis, kidney disease, HIV/AIDS, lupus, and multiple sclerosis.

Why is Depression Common in People With a Chronic Illness?

People diagnosed with chronic illnesses must adjust to the demands of the illness itself, as well as to the treatments for their condition. The illness may affect a person's mobility and independence, and change the way a person lives, sees him or herself, and/or relates to others. For these reasons, a certain amount of despair and sadness is normal. In some cases, a chronic illness may actually cause depression.

Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression. Depression and illness may occur together because the physical changes associated with the illness trigger the depression, the individual has a psychological reaction to the hardships posed by the illness, or simply as a coincidence.

Which Long-Term Illnesses Can Lead to Depression?

Any chronic condition can trigger depression, but the risk increases with the severity of the illness and the level of life disruption it causes. The risk of getting depression is generally 10-25% for women and 5-12% for men. However, those with chronic illnesses face a much higher risk -- between 25-33%.

Depression caused by chronic illness often aggravates the illness, especially if the illness causes pain, fatigue, or disrupts your social life. Depression can intensify pain. It causes fatigue and sluggishness that can worsen the loss of energy associated with these conditions. Depression also tends to make people withdraw into social isolation.

The rate for depression occurring with other medical illnesses is quite high:

What Are the Symptoms of Depression in People with Chronic Illness?

Patients and their family members often overlook the symptoms of depression, assuming that feeling depressed is normal for someone struggling with a serious, chronic illness. Symptoms of depression are also frequently masked by the other medical conditions, resulting in treatment for the symptoms -- but not the underlying cause of the symptoms -- the depression. It is extremely important to treat both forms of illness at the same time.

What Can Be Done to Treat Depression in People With Chronic Disease?

Treatment of depression in people with chronic disease is similar to that offered to other people with depression. Early diagnosis and treatment for depression can reduce distress, as well as the risk of complications and suicide. People who get treatment for depression that occurs at the same time as a chronic disease often experience an improvement in their overall medical condition, a better quality of life, and are more easily able to stick to their treatment plans.

If the depressive symptoms are related to the physical illness or side effects of medicine, treatment may just need to be adjusted or changed. If the depression is a separate problem, it can be treated on its own. More than 80% of people with depression can be treated successfully with medicine, psychotherapy, or a combination of both. Treatment with antidepressant drugs can start to work within a few weeks.

Tips For Coping With Chronic Illness

Depression, disability, and chronic illness form a vicious cycle. Chronic illness can bring on bouts of depression, which, in turn, can lead to a run-down physical condition that interferes with successful treatment of the chronic condition.

Following are some tips to help you better cope with a chronic illness:

Next: Diagnosing Depression >

Reviewed by the doctors at The Cleveland Clinic Department of Psychiatry and Psychology.

Edited by Charlotte E. Grayson, MD, Jan. 2004.

Portions of this page copyright The Cleveland Clinic 2000-2004

http://my.webmd.com/content/article/45/1663_51215.htm?z=2946_00000_5022_pe_02

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Body Image: The Inner Mirror

James W. Breakey, PhD, CP

ABSTRACT

Each individual holds an idealized mental picture of his or her physical self; he or she uses this image to measure concepts related to body image. Once an individual's percepts or concepts of this body image are altered, emotional, perceptual and psychosocial reactions can result.

Psychosocial well-being often is affected by such factors as anxiety and depression, concerns with self-esteem, and satisfaction with life. In the general population, a person's positive or negative feelings toward his or her body have been found to affect his or her well-being.

Living in a society of mostly able-bodied persons, individuals who have disabilities must contend with comparing the appearance of their bodies and functional capabilities to those of others around them. Mental health practitioners often see physical deviation from the norm as central to people's behavior and personality.

The following article strives to provide prosthetists and orthotists with insight into the relationship between body image and psychosocial well-being.

Key words: Amputee; Psychosocial; Body Image; Self-esteem.

Introduction

American society is preoccupied with the perfect human form. Anyone who deviates from this ideal image is labeled different. Many relatively normal individuals have difficulty dealing with this issue of body appearance. In essence, whether a person is overweight or underweight or has a large nose by society's standards is not the determining factor in psychological health; instead, how a person perceives his or her physical uniqueness influences his or her subjective well-being.

Knowledge about the self is established primarily through sensory experience and perceived viewpoints of others. As a result, the body may become invested with significance well beyond its functional capabilities. Because a person's physical appearance is his or her calling card, it is reasonable to hypothesize a significant relationship would exist between our evaluations of our bodies and our subjective well-being.

Body image is the mental picture a person forms of his or her physical self. According to Kolb (1), each individual holds an image of the body that he or she considers the ideal in relation to his or her own body. An alteration in a person's body image sets up a series of emotional, perceptual and psychosocial reactions (2). Loss of a limb through amputation will, Kolb suggests, probably lead to a long-term disorder in body experience (2).

The perceived discrepancy between the altered physical state (e.g., caused by a mutilating injury) and the former physical state produces emotional tension (3). This tension is experienced as anxiety, which becomes chronic as long as the discrepancy continues (3).

Results have led to a better understanding of ill-being--specifically, anxiety, depression and unpleasant emotions. Research has been conducted on the construct of subjective well-being (4,5). Two broad aspects of subjective well-being have been identified: an affective component, including pleasant affect and unpleasant affect (6); and a cognitive component (7), referred to as life satisfaction.

In their extensive body-image survey, Cash et al. (8) included several items they identified as comprising psychosocial well-being. The items addressed self-esteem, life satisfaction, depression, loneliness and feelings of social acceptance. Persons with positive evaluations about their body image reported favorable psychological adjustment. In contract, those with negative feelings presented lower levels of psychosocial adjustment (8).

Single characteristics have the power to evoke a wide range of feelings and impressions about a person (9). This concept, called spread, suggests physical deviation from the norm is frequently the key to a person's behavior and personality. Furthermore, such deviation can be largely responsible for many important developments in the life of a person with a physical disability (10). The concept of spread is valid both for someone who has a disability and for those evaluating that individual. Some may view the disabled individual as less worthy and less capable. The individual also may take this view. Thus, physical form may affect self-perception of an individual's capability as well as his or her acceptability to others.

Those who have disabilities often must contend with the effects of stigmatization. Stigma refers to an attribute, either physical or psychological, that makes a person different from others and therefore less desirable (11). Considering the stimulus that a person presents and the feedback received purely on the basis of physical appearance, it is conceivable that others' reactions to a newly disabled individual may influence how the individual perceives him- or herself. For instance, if the response is negative, the person may begin to view him- or herself as deformed, incompetent and inferior. A comparison of his or her body appearance and capability with those of others, combined with the potential effects of spread and stigmatization, may lead him to a negative body image, which also may affect his or her subjective well-being.

A person who has lost a limb through amputation tends to compare his or her appearance and functional capabilities to others', the majority of whom are able-bodied. Based on these comparisons, one could speculate it would be difficult for an individual who has a disability to develop a positive attitude with respect to his or her body.

Review of the Literature

Body Image

Body image is one's psychological picture of the physical self. The noted neurologist Sir Henry Head was the first to describe the concept of body image. This image, or body schema, is a unity of experiences of the past, coupled with present body sensations, which are organized in the sensory cortex of the cerebrum (12). Each individual develops this body schema: a model or self-picture that can be compared to others in terms of body postures and body motions (13). Body experience is important to normal psychological development and behavior (12).

Body image is more than a reference model; it also has emotional and symbolic significance (14). Schilder defines body image as the picture of our own body which we form in our mind (14). Practicing as a psychiatrist, he realized distortions in body experience attributed to brain pathology needed to be studied not only from the perspective of brain physiology but also from the psychological viewpoint. The many variables associated with body image have principal relevance in both the pathological aspects of daily life and in ordinary everyday events. Because body image lies at the center of personality, body experience is the nucleus of psychological life (14).

Further, body-image development is influenced by several factors:

Body image is capable of extending beyond the physical boundary to envelop external objects such as clothing or a walking stick. The more rigid the connection of the body with the object, the more easily it becomes part of the body image (14). In summary, body image as defined by Schilder is the picture of our body we form in our minds as tridimensional units, including interpersonal, environmental and temporal factors (1).

According to Fisher and Cleveland (15), Freud considered body image instrumental to ego development; Fisher and Cleveland agree with Schilder that personal symbolic significance can be attributed to body regions. Sensations from body regions to which an individual is especially sensitive arouse attitudes proportional to the psychological significance placed on the body part.

Similarly, the more a person accepted his body, or liked it, the more secure and free from anxiety he felt (16). Therefore, Jourard postulates, a high degree of body cathexis [ratings of body parts] would contribute to an individual's acceptance and approval of his or her own overall personality. Evaluative feelings about the body affect the individual's psychosocial, social and physical exchanges with the environment (17). The degree and direction of one's feelings toward the body are related to anxiety, insecurity and stability. There is a high correlation between body cathexis and self-cathexis (ratings of aspects of self).

A relationship exists between the body's personal security, mitigation of anxiety and positive feelings of self-esteem. Personal appearance is a means to many highly valued ends in our society, and, if a person is not physically attractive or perceives him- or herself as unattractive, his or her access to these goals is diminished, leading to anxiety and a general self-devaluation (17).

The concept of body-image boundaries is an important dimension of the body image (15). In normal perceptions, an individual's body limit or boundary is unconscious and allows a sense of a fixed separation from the external environment. Using projective tests, such as Rorschach or Holtzman ink blots, perceived body boundaries may be studied (15). More specifically, Fisher and Cleveland report on a method they developed to sense perceived boundaries using ink blots. Their method assessed two separate responses: the barrier response (which stresses finiteness of boundaries, called barrier scores) and the penetration response (expressing indefiniteness and penetration of the boundaries, called penetration scores). Fisher and Cleveland gathered a good deal of evidence that revealed the way people picture the boundaries of their ink blot responses mirrors how they feel about their own body boundaries. The ink blot responses closely linked with body events, specifically with the psychological and physiological contrast between interior and exterior body regions (18).

Barrier scores have been found to be correlated with effectiveness in coping with the ability to adapt to insults of the body integrity. For example, barrier scores have correlated positively and significantly with effective adjustment to amputation (19).

Body awareness is another dimension of the body image. Fisher (20) describes his body prominence measure, which he has used to quantify body awareness. Subjects are instructed to list 20 things they are aware of at the moment. All references to the body or body functions are scored. The rationale for this measure is simple: The greater the focus an individual places on his or her body, the greater the number of references to the body he or she will make in the 20 things. Some people disregard body perceptions while others are tuned into their body messages. Meanwhile, hypochondriacal individuals tend to demonstrate heightened body awareness and view these sensations as threatening.

Fisher also uses another investigative tool, the body focus questionnaire, which consists of 108 pairs of body parts divided into eight scales. Subjects are asked to choose the one pair of body parts of which they are most aware. A score is derived for each of the eight scales equal to the number of times a particular pair of body parts is picked (e.g., heart or stomach). According to Fisher, an individual places a special value and symbolic meaning on body parts that tend to be unconscious and may reflect intrapsychic defenses and conflicts (20).

The disturbance of a normal body image, as occurs with an amputation, sets up a series of emotional, perceptual and psychological reactions in the individual (1). Individuals who have undergone amputation of a limb may experience anxiety and depression (1). Psychological dysfunction can result when body image changes (21) because body parts carry conscious and unconscious symbolic meaning for an individual (22). If the body image is altered, such as through limb loss, psychological and psychopathological responses can occur. Patients, including amputees, manifest body-image disturbance (3). The types of problems Henker most frequently observed were anxiety, depression, guilt, projection and scapegoating. He concluded the value placed on the lost anatomical part influences the reaction to the altered body appearance. The discrepancy between the perceived altered physical state and the former physical state produces emotional tension. This tension is experienced as anxiety, which becomes chronic as long as the discrepancy continues (3).

Body dysfunction has personal meaning for the individual who places value on the body part(s) and function(s) (21). This subjective value is the result of 1) past learning experiences about body dysfunction, either personally or from others; 2) how successful one is in coping with these experiences; 3) positive or negative reinforcement received from others about one's body appearance, skills and behavior; and 4) cultural agreement on attitudes held toward body parts.

Individuals value certain body parts or functions for several reasons: They provide a source of self-esteem or sense of competence; help contend with the environment; enhance self-concept and stability of body image; and allow the individual to continue social, sexual and vocational functioning. Sometimes the value has unconscious symbolic meaning which imparts of it a vital value. Any disability that disrupts any of these personal values will have a deep psychological effect on the individual (21).

The degree of emotional reactions to body dysfunction correlates with the subjective value and meaning placed on the body part--both conscious and unconscious--and not the severity of the pathology or lost function (23). Mitchell's study supports Shontz's position. The relationship was studied between the barrier score and the ability to adapt to spinal cord injury (24). Using Rorschach ink blots, Mitchell determined barrier scores from 50 male paraplegics and 52 male quadriplegics. Barrier scores were significantly higher in the high-adjustment paraplegic subjects than in the low-adjustment group. In contrast, the barrier score did not present any significant distinction in the quadriplegic sample between the high- and low-adjustment subjects. When the impact of a disability is so destructive, as in quadriplegia, adjustment may be a function of variables outside of self, such as outside support systems (25).

Can a value be put on different body parts? Plutchik, Conte and Weiner (26) addressed this question by asking 203 subjects to determine a dollar value that would be acceptable if a body part were lost in an accident and an insurance claim were to pay off. The largest compensations were asked for the leg, eye and arm as contrasted with lower compensations for the finger and toe. The researchers have interpreted these responses as relating to an individual's ability to function and to interact with the environment. Other findings in this study indicate no significant relationship between the dollar value placed on a body part and the age of the individual. This appears to be consistent with the earlier findings of Fisher (27), who reported older people do not differ from younger people in the properties they assign to their body boundaries.

An analysis was made of a 2,000-person sample of a 30,000-person survey of the general public on body image (8). In the general population the authors found a relationship between psychosocial well-being and body image. Seventy-three percent of women and 62 percent of men who had a negative body image were well-adjusted whereas 97 percent of women and 95 percent of men with positive images of their physical appearance were well-adjusted. The authors included several items in their survey to tap what they believed constituted psychosocial well-being. These items asked about self-esteem, life satisfaction, loneliness, depression and feelings of social acceptance (8). Persons with disabilities or disfigurement exhibited a negative reaction on perceived appearance, fitness and health. Their increase in negative body image was 12 percent in men and 20 percent in women as compared to the rest of the group.

Based on the preceding literature review, body image appears to be a construct that is a product of pertinent experiences and that can exert regulating influences on behavior. Any significant change in experience relevant to the body would be expected to produce a change in perception and evaluation of an individual's body image.

Personality and Physical Disability

Three important psychological maneuvers act on body experience (20). The first is magnification and dampening of body experience. For example, people can focus on their bodies to the point of developing hypochondriasis, or, by contrast, become celibate (as demanded by some religious groups). A second maneuver is setting up a division between self and the environment. For some people, this differentiation between the body and the external world is necessary for development of a concept of self. The third maneuver is applying attention to dominant body areas. In short, patterns of body awareness provide the groundwork for the expression of personality (14,20).

Personality cannot exist without the body image any more than a house can exist without walls (27, p. 467). In an earlier discussion on personality and the disabled, Shontz (28), p. 36) states, The term personality refers to the way in which the person with a disability integrates the behavioral facts of his disability into his total life pattern. The reaction to disability is individualized, and a person's individuality overshadows all other variables, including those of etiology and magnitude of the somatic involvement (30). In an extensive review of the literature, Shontz (23,29) found no data to support a relationship between disability and degree of adjustment--that is, there was no convincing support or the proposition that disability produces or is correlated with personality maladjustment (29, p. 49).

In support of Shontz, Wright (10, p. 240), after a review and discussion of the literature in her book Physical Disability--A Psychosocial Approach, concludes, There is no substantial evidence to indicate that persons with an impaired physique differ as a group in overall adjustment from their able-bodied counterparts. She asserts, There is no clear evidence of an association between type of physical disability and particular personality characteristics (10, p. 241).

Earlier studies indicate similar findings. For example, Fishman (31) found no reason for identifying unique personality characteristics in amputees. Tizard (32) drew the same conclusion from a literature review on the personality of epileptics. Other authors have reached essentially the same conclusion: Harrower and Kraus (33) and Cohen (34) in multiple sclerosis and Moos (35) in rheumatoid arthritis. Later, Pringle (36) reports on his extensive review of the literature written between 1928 and 1962 on the emotional and social adjustment of children with physical disabilities. He found no evidence of an association between disability and behavior characteristics or that physical disability leads to maladjustment. Another study, Weinberg-Asher's comparison of able-bodied and disabled college students (37), found no difference in the way they viewed themselves.

In contrast, a number of studies dispute the above findings. Barker et al. (38) studied severity of the disability and found significant differences in self-esteem in groups of mildly, moderately and severely disabled. Ware, Fisher and Cleveland (39) noted a significant relationship between adjustment to poliomyelitis and body image. Cowen and Brobrove (40), in a study comparing partially and totally blind children, reported marginally impaired subjects display greater personality disturbance than severely impaired subjects. In a study of amputees, Weiss et al. (41) found severity of disability did affect the personality as well as physical functioning. Matulay and Pauloukin (42) studied epileptics and found them, as a group, to show increased anxiety, low frustration tolerance and depressive mood swings.

The following conclusions may be drawn about personality and the physically disabled:

  1. There is little evidence that particular personality characteristics are associated with particular disabilities.
  2. There is little evidence that the age of onset of a disability and the severity are correlated with psychological adjustment.
  3. People who have disabilities, in general, manifest different personality factors than the non-disabled. These factors include increased anxiety, increased depression and impaired self-concept.

Psychological Levels and Functions of Body Experience

In his book The Psychological Aspects of Physical Illness and Disability, Shontz (23) suggests body experience occurs at four levels: body schemeta, body self, body fantasy and body concept. His observations are summarized below.

Seven normal functions of body experiences are described by Shontz (23,28):

  1. Acting as a sensory register, the body realizes incoming sensation, interprets and integrates the information, and files the data for retention.
  2. In response to stimuli, the body can respond as an instrument for action. This action can be as simple as a primitive reflex or as involved as jumping out of the way of an oncoming vehicle.
  3. Humans come equipped with a source of drives adequate to assist survival. Additional needs are generated by learning. Bodily drives usually are automatic, such as hunger or thirst, whereas social drives are learned.
  4. As a stimulus to the self, the body serves as a reference for self-identity. The body is heavily endowed with significance to be evaluated in relation to others.
  5. Because the body self is greatly influenced by social values, it acts as a stimulus to others. As a result, the response from others can cause an individual to evaluate him- or herself in those terms. Physical appearance is a definite social stimulus.
  6. The body offers a private world for the personal self to exist. Shielded by one's physical boundaries, a place of private expression is available, unique and impervious to others.
  7. Besides being a protective shell, the body is a vehicle or an expressive instrument for individual expression. Countless and elaborate expressions are encountered daily in body language seen between interacting individuals.

Later, Shontz (43) affirms the levels and functions of body experience are integrated, as is any structure system, e.g., a corporation. Integration is mandatory if a person is to prevail and individuate. Body experience and personality operate together. If the body is disturbed, the personality or self is affected to some degree and vice versa. Most body functions are taken for granted, but when they are interfered with by illness or disrupted by disability their importance becomes more apparent to the individual (23).

Conclusion

The implications of one's perception of body image is important. Generally, the initial feedback and reinforcement we receive from others is about our bodies--their appearance, how they move, etc. Early childhood experiences and later development are essential to personality development and contribute to the perception of body image. The concept of self initially evolves from sensations and perceptions from within the body and later from the perceptions of self communicated to the individual via feedback from family, friends and peer groups. Blossoming of the body image is integrated with the socialization process, which involves internalization of social standards of attractiveness, capability and normality. Individual development of a positive or negative body image is thus influenced by the perception of oneself relative to these standards. Since the body creates the first impression, eliciting a large amount of feedback on which feelings of self-esteem are built, it is understandable a relationship would be seen between body image and self-esteem.

Through the concepts of devaluation, spread and stigmatization, the psychological assault with which the individual who has a disability must contend is understandable. This individual must deal with his or her perception of the disability, the spreading of the disability to other aspects of self, and the judgment by peers and society of his or her physical appearance and capabilities. Therefore, it is easy to understand why a person's body image may very well affect his or her psychosocial well-being.

*  *  *  *  *  *  *  *  *  *  *  *  *   

Charles Stanley

January, 1990 Radio Message

"Self-Rejection: Its Characteristics, Causes & Cures"

"Self-rejection is a form of bondage that causes you to project these feelings on others that they didn't feel them at all." (Self-rejection, and all the so-called feelings associated with it, would be better defined (Biblically) as one's sinful response to ones circumstances and/or sin against him.)

-  Uses Col. 1:21,22 as proof-text for this message and the thesis that people who suffer from feelings of self-rejection, "suffer from a very painful form of bondage."

-  "People in self-rejection syndrome have chronic feelings of unworthiness."

-  "Rejection is a form of control, manipulation, and domination; when someone needs acceptance and we deprive them of that, we are controlling, manipulating, and dominating them." (The Bible, of course, knows nothing of this "need for acceptance;" its source in humanistic psychology.)

-  Stanley's bottom line is that "people who suffer from self-rejection are willing to base their self-worth on opinion of others rather than on relationship to God."

-  "Dominating thought of person feeling self-rejection is this: 'I must please these people in order to feel good about myself.'"

Characteristics of people feeling self-rejection:

-  Overemphasis on dress (a self-image problem)
-  Difficult time trusting God
-  Difficult time loving others/being loved by others (psychic determinism/childhood hurts)
-  Critical spirit
Feelings of inferiority/inadequacy
-  Anger
-  Perfectionism ("I must be perfect to feel good about myself; arrogance and pride feelings are really cover-ups for insecurity.")
-  Easily hurt
-  Suspicious of others actions
-  Self-isolation (that way, the only one that rejects them is themselves)
Depression (because you failed your expectations)
-  Self-verification (of their worthiness/self-worth)
-  Sensual fantasies (not a matter of sexual morality, it's a matter of acceptance)
-  Domineering the circumstances

The above list should actually be labeled "sinful responses of people claiming self-rejection." The above items in the list have no Biblical basis. Their roots are instead Rogerian/behavioristic psychology and Freudian psychic determinism.

-  "So what if someone else rejects you, your self-worth is not based on that individual's opinion, but on God's."

Causes of self-rejection: (This scenario completely ignores an individual's responsibility for sinful responses to ones circumstances and/or to sinful actions against them.)

-  Early in life deformity
-  Deep emotional hurt from past childhood [psychic determinism]
-  Death of a parent ("Daddy died because he didn't love me" feelings.)
-  Abandonment ("You create awesome feelings of rejection that will go with that family the rest of their life, and you will be the ultimate reason for it.")
-  Divorce
-  Child abuse
-  Guilt feelings from past sins/mistakes
-  Criticism from other people

-  According to Stanley, three feelings needed for one to be emotionally healthy:

(a) Feelings of belonging
(b) Feelings of worthiness
(c) Feelings of competence

Self-worth should be based upon what God says, which according to Stanley is, "I have a sense of worth -- Jesus died for me; I have a sense of competence -- the Holy Spirit is working in me" (complete failure to recognize that Christ died for us, not because of our great worth, but because of our great sin!).

-  Stanley's three steps to overcoming self-rejection:

(a) Identify the feelings of rejection
(b) Reject the feelings of rejection (based on God having said, "I'm worthy ")
(c) Affirm the following: (sounds a little like positive confession)

(1) "Father, I thank you that I am unconditionally loved"
(2) "I am completely forgiven"
(3) "I am totally accepted"
(4) "I am complete in Christ"

Biblical Discernment Ministries

http://www.rapidnet.com/~jbeard/bdm/exposes/stanley/jan90.htm

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http://www.lymphedemapeople.com/thesite/lymphedema_complications.htm

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/forum/forum.asp?FORUM_ID=7

For information about Lymphedema Wounds

http://www.lymphedemapeople.com/thesite/lymphedema_wound_care_revised.htm

For information about Lymphedema Treatment Options

http://www.lymphedemapeople.com/thesite/lymphedema_treatment_options_revised.htm

For information about Children's Lymphedema

http://www.lymphedemapeople.com/thesite/lymphedema_childrens_pediatric.htm

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Lymphedema Glossary

http://www.lymphedemapeople.com/forum/topic.asp?TOPIC_ID=247

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Lymphedema People

Support Groups

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Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Lipedema Lipodema Lipoedema

No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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Lymphatic Disorders Support Group @ Yahoo Groups

While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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All About Lymphedema

For our Google fans, we have just created this online support group in Google Groups:

Homepage: http://groups-beta.google.com/group/All-About-Lymphedema

Group email: All-About-Lymphedema@googlegroups.com

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Lymphedema Friends

http://groups.aol.com/lymphedemafriend

If you an AOL fan and looking for a support group in AOL Groups, come and join us there.

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our home page we have 18 categories with 218 articles

on lymphedema, edema, and related conditions:

                     The Forums

                      Lymphedema Information

                      Lymphedema and Edema Related Conditions

                      Hereditary Conditions of the Lymphatics

                      Related Medical Conditions

                      Complications of Lymphedema

                       Lymphedema Treatment Options

                      Complete Listings of Therapists and Links

                      Cellulitis and Related Infections

                      Wound Information, Care, Treatment

                      Skin Care, Conditions and Complications

                      Exercise, Diets, Nutrition

                      Miscellaneous Interesting Articles section

                      Resources, Organizations, Support Groups

                      Government Resources

                      Advocacy and Lobbying Resources

                      Resources for the Medical Community

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