UNDERSTANDING THE EMOTIONS SURROUNDING CHRONIC FATIGUE SYNDROME

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

Emotions Surrounding CFS

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" CFS 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 of Chronic Fatigue Syndrome, there is "temporary relief" in having a name for the illness. But, then reality sets in that a "name" 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, CFS 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 that they really are sick. Sometimes anger becomes so severe the patient can appear billigerent. This emotion emerges when the media, public, medical professionals, friends and loved ones lack understanding of CFS. 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's too late.

LOSS OF PERSONAL CONTROL: a very difficult emotion to handle. Everyone realizes we have very little control of the rest of the world, but we find comfort in feeling we have a lot of control within ourselves. However, CFS 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 CFS 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 severely, they may feel suicide is their only alternative. Not all patients consider suicide an option, but for the few who do, pre-exisiting psychological factors may have been involved before getting CFS. Treatment with a counselor familiar with CFS 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 disapear. 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 CFS patients as well as others who have chronic illnesses. Many patients say that if they get well, they will never be the same. CFS gives a new perspective to life with the realization that we are truly dependent upon our health.

LEARNING TO COPE: comes only after knowledge that the medical community does not have "the answer" for CFS. Patients must reach within their beings 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 stesses and prioritize. Unfortunately, some things never get done, but somehow life still tends to 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 CFS 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 CFS can give the patients. Patients are burdened enough just living with CFS without having to convince others that this is a physical illness. "Two truly are stronger than one," and though understanding, maybe we can help patients endure all the aspects of this illness lest we forget that "people do need people."



THE CFS TUNNEL
by Dianna M. Mosler
December, 1990
Age 12, (a CFS patient)

Some people say,
there is always light at the end
of the tunnel.
I agree,
But in the CFS tunnel you scrape,
climb and even dig.
Sometimes you think you have
found the end,
But alas,
you just find a dead end.
There are streaks of light coming in,
called hope.
That is what keeps you going.
The end of the tunnel is,
understanding,
and of course, a cure.
In the CFS tunnel,
only the strong survive!



Information for this text is from the brochure, "Understanding the Emotions Surrounding Chronic Fatigue Syndrome," 1992, by:

National Chronic Fatigue Syndrome and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO, USA 64133
(816) 313-2000

(Text may be reproduced and/or distributed provided source is credited.)

Web page design by Bill Jackson, 1996.

Any comments? Send them to Bill Jackson at cfsdays@yahoo.com

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