The Emotions of Chronic Illness - Including Lymphedema

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The Emotions of Chronic Illness - Including Lymphedema

Postby patoco » Mon Sep 04, 2006 8:49 am

Understanding Emotions and Chronic Illness - even Lymphedema

Understanding: "the act, state or feeling of a person who understands; comprehension, knowledge, sympathetic awareness, etc."

Concern: created when an illness lingers and medical professionals are unable to find the etiology (cause) of the problem.

Fear: caused due to uncertainties--could it be an undetected illness that hasn't fully manifested itself, i.e., cancer, MS, lupus, AIDS, etc.

Denial: all of us, at some time, possess this emotion, especially when it pertains to our most valuable possession, our health. Many patients tend to "deny" the illness and attempt to "live their lives", but soon find their body is controlled by something out of their control.

Temporary Relief: established when all other illnesses known to modern medicine are negative. When a patient is given a diagnosis, there is "temporary relief" in having a name for their illness. But, then reality sets in that a "name" only doesn't cure the illness.

Frustration: due to the patient's feeling that their body has somehow let them down. This can result in "jealousy" or "envy" in that the patient can't do what someone helping them is doing. They don't want the person helping to be ill, but instead wish they were well enough to handle the task. Society tends to dictate that if you try a little harder, endure, etc., you can do anything. But, the illness becomes the "master" in that regard.

Unfairness: results when the patient feels something has been taken away--i.e., "being cheated of going on with their life". Sometimes this emotion can create a sense of "worthlessness."

Anger: sometimes directed at doctors who have told the patient "it's all in your head" (some patients have been placed in psychiatric wards). Anger often results when patients spend thousands of dollars seeing many different doctors trying to "convince" someone they really are sick. Sometimes anger becomes so severe the patient can appear belligerent.

This emotion emerges when the media, public, medical professionals, friends and loved ones lack understanding of your illness. Too often, society demands visual evidence of affliction before it can be valid, i.e., a broken leg, crippled body, etc., but too often forgets that some illnesses such as cancer often have no physical signs until it is too late.

Loss of Personal Control: a very difficult emotion to handle. Everyone realizes we have very little control on the rest of the world, but we find comfort in feeling we have a lot of control within ourselves. However, the illness tends to become the "authority" of the patient and suddenly "is in the driver's seat" showing no respect for the body it resides in.

Devastation: created because of not only emotional aspects of the illness, but also financial loss if a patient becomes disabled or can only work part time. All of us have certain aspirations, but illness all too often destroys those plans and brutally tells the patient that "without your health, you are very limited."

Hopelessness: a few patients suffer this emotion so severe, they may feel suicide is their only alternative. Not all patients consider suicide an option, but for the few who do, pre-existing psychological factors may have been involved before getting sick.

Treatment with a counselor familiar with your illness can help patients deal with this emotion.

Mourning: sadly, a process each patient has to endure. The realization that their life may never, ever, again be the same. A "loss" is suffered not just personally, but many times friends and loved ones tend not to understand the illness or the loss of an energetic person and a closeness once shared can diminish or even disappear. Shattered dreams are hard to lose, i.e., unable to fulfill a long awaited promotion, career, marriage, family, new home, new car, attend school, prom, or even be well enough to go on vacation.

Humbling: the illness tears at every emotion until it "humbles" the patient. Patients come to realize that regardless of the economic or social status, they share a certain camaraderie with other patients who have the same chronic illnesses. Many patients say if they get well, they will never be the same. Chronic illness gives a new perspective to life with the realization we are truly dependent upon our health.

Learning to Cope: comes only after the knowledge the medical community does not have "the answer" for every illness. The patient must reach within their being and find the tools to live with this illness. They can do that with the help of others through reputable support groups, educational materials that are backed by fact, not fiction, and relying on loved ones, family and friends. Also, they can work with their physician in being a "partner" in their own health care.

Acceptance: this emotion goes hand in hand with coping. Once patients learn to accept the illness rather than "fight" it, they tend to find ways to conserve what energy they do have and spend it wisely each day. They find ways to eliminate stresses and prioritize. Unfortunately, some things never get done, but somehow life tends to still proceed in spite of it. With acceptance, each patient tends to find strength they did not realize was there.

Hope: even though "coping" and "acceptance" allow patients to adjust to illness and still enjoy life, each patient, deep within, desires that medical science will find a cure, prevention and/or treatment. Some patients depend on this emotion more than others.

Understanding: this emotion is the greatest "gift" those not afflicted with chronic illness can give the patients. Patients are burdened enough just living with their disorders without having to convince others this is a physical illness. "Two truly are stronger than one" and through understanding, maybe we can help patients endure all the aspects of illness lest we forget that "people do need people."

Material for this webpage was originally produced in a brochure compiled by:

National CFS and Fibromyalgia Association
P O Box 18426
Kansas City MO 64133


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