Responses to loss are sometimes discussed as a sequence of stages: denial, anger, bargaining, depression and acceptance. For most people, however, there is not a neat, orderly progression.
Rather, grief is a more individual process in which a person may experience some, but not necessarily all, of the responses just listed. Also, a person may experience some emotions more than once or may feel two or more at the same time.
Denial and Disbelief
A diagnosis of CFS or fibromyalgia often produces relief by giving a name to suffering, but this initial reaction may be accompanied by shock and disbelief. Common reactions include ignoring the diagnosis by trying to continue leading a busy life or seeking a cure by going from doctor to doctor or by trying special treatments or diets.
Denial can be an adaptive response, allowing time to adjust gradually to all that is different and to the uncertainty brought by serious illness. But repeated unsuccessful attempts to find a cure may reinforce a sense of helplessness and despair. Using self-management strategies can replace a sense of helplessness with experiences of control.
Fear and Worry
Fear and worry are common and understandable reactions to the unpredictability and uncertainty brought by illness. Not knowing what the future holds and experiencing a sense that life is out of control both produce tremendous anxiety. Developing and implementing a self-management plan can address worry in several ways.
The use of pacing, often in combination with medications, can bring stability, thereby replacing uncertainty with predictability. Also, because anxiety usually produces negative thoughts, changing self-talk to make it less fearful and more realistic reduces anxiety. In addition, meeting others who have learned to live successfully with CFS and FM can be a powerful way to dispel fear.
Frustration and Anger
Frustration and anger are common reactions to loss and the experience of having life changed by something over which you had no control. They are honest emotions that honor the recognition that life changed for no apparent reason, becoming much more difficult.
Feeling angry can have positive effects if it motivates you to work to regain control of your life or if it moves you to channel your energy toward helping others. But anger can be destructive if it is expressed by blowing up, shouting or by speaking cruelly. Such actions may drive away people who want to help or on whom you depend.
For people with CFS and FM, anger and frustration often manifest as irritability or crankiness. Gaining control over symptoms by strategies such as scheduled rests can reduce frustration and lessen episodes of irritability.
Guilt
You may blame yourself for becoming sick, saying things like "If only I had taken better care of myself." Guilt can be helpful if it motivates you to take better care of yourself from here forward, but it can be a trap if you see your illness as a personal failure. Whatever happened before, you can exercise control only from the present forward.
Guilt can also be useful in a second way, as an impetus to heal relationships. If we feel guilt because of harm done to others by actions under our control, we can respond by apologizing and making amends.
Sadness and Depression
Depression and feelings of sadness are common in chronic illness. They are natural responses to loss, uncertainty, limits and the discomfort of symptoms. Depression is a response that lessens further stress or trauma by slowing things down, allowing time to process what has already occurred.
Depression usually eases over time, but if not, several strategies may be helpful. First, self-help techniques can help you move forward, refuting the belief that all is hopeless.
Second, you can work to reframe your thoughts so that they are more realistic and hopeful. See the article Changing Self-Talk.
Third, since a considerable number of CFS and fibromyalgia patients suffer from clinical depression, you may be helped by professional guidance and medications.
Acceptance
Working through loss often takes several years. The end point is acceptance, the recognition that life has changed, perhaps permanently and certainly for an extended period of time. Acceptance involves letting go of your past life and also of the future as you had envisioned it.
Acceptance also includes a realization of the need to live differently than before and a willingness to build a new life. This attitude was summarized by Dean Anderson, a person with CFS, who says in an article in the Success Stories section of this website that a certain kind of acceptance was the key to his improvement and eventual recovery.
He described it not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." To him, acceptance also meant finding ways "to be productive and [to] find fulfillment under unfamiliar and difficult circumstances."
Fibromyalgia patient Joan Buchman outlined a similar process of change in her article How I Created a Good Life with Fibromyalgia, also posted on this site. She wrote that while she did not choose to have fibromyalgia, she did have a choice about how to live with it. She reduced her symptoms through making lifestyle changes and developed a fulfilling life by "focusing on my many blessings."
Dean and Joan both came to an acceptance of the reality of their illness and the need to lead a different kind of life. They found the key to improvement in the combination of accepting the illness and disciplining themselves to live in hope within the limits imposed by CFS or FM.
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