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Coming to terms with loss is one of the biggest challenges of CFS and fibromyalgia. Both conditions create many serious losses, including loss of control over one's body, loss of friends and loss of valued activities.

People are often forced to give up their job and so lose income, companionship and challenge. And often people have to abandon dreams, thus losing the future they had envisioned for themselves. In sum, we experience the loss of the person we used to be and the person we hoped to become.
 

The pervasiveness of loss presents us with some of our most daunting tasks: keeping hope alive and bringing new meaning to life when much has been taken away. This chapter discusses how to work through loss. The next chapter describes how to move beyond loss to build a new life.

Responses to Loss

Loss triggers the emotional reaction known as grief. While grief is usually associated with the death of a loved one, it can occur after any loss. Responses to loss are sometimes discussed in terms of the well-known stages of death described by Elizabeth Kubler-Ross in her book On Death and Dying: denial, anger, bargaining, depression and acceptance.

For most people, however, there is not a neat, orderly progression implied by the term stages. Rather, grief is a more individual process in which a person may experience some, but not necessarily all, of the emotions described by Kubler-Ross. Also, a person may experience some emotions more than once or may feel two or more at the same time.
 

Working through grief can produce a double benefit. Not only will you resolve a key psychological issue, you may also help yourself physically as well. Grieving is associated with the flare-up of symptoms, so resolving feelings of loss can help control symptoms.

The health effects of working through grief were shown in a study of HIV-positive men who had lost a close friend to AIDS. The research found that those men who were able to find meaning in the loss had a significantly lower risk of dying of AIDS themselves in the following several years.

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. A diagnosis of either CFS or FM means being told you have a condition for which there is no cure and which has no consistently effective medical treatments. Common reactions include ignoring the diagnosis by continuing to lead 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 you to adjust gradually to all that is different and to the uncertainty brought by the illness. Denial is a way to keep hope alive after being told that your life has changed and may never be the same. But, if you get stuck in this reaction, you won't be able to face your situation realistically.

The repeated unsuccessful attempts at a miracle cure may reinforce a sense of helplessness and despair. Gaining some control over symptoms and using self-management strategies, such as pacing and stress reduction, can replace the sense of helplessness with experiences of control.

Fear and Worry

Fear and worry are common reactions to the unpredictability and uncertainty brought by illness. Not knowing what the future holds and the sense that your life is out of control both produce tremendous anxiety.
 

Developing and implementing a self-management plan can address worry in several ways. First, the use of pacing, often in combination with medications, can bring stability, thereby replacing uncertainty with predictability.

Second, because fear is usually accompanied by muscle tension, you can break the connection between emotion and physical reaction by including relaxation procedures in your plan. Third, because anxiety usually produces negative thoughts, being attentive to self-talk and changing it to be less fearful and more realistic reduces anxiety. (For more on self-talk, see Chapter 31.)

Fourth, educating yourself about your illness can help by replacing worries with facts. For example, some fears about the future may be alleviated by knowing that neither CFS nor fibromyalgia is usually progressive and that many people with CFS and FM improve. (For more strategies, see the discussion of anxiety and worry in Chapter 19.)

Frustration and Anger

Frustration and anger are common reactions to loss and the experience of having your 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. Frustration can also be triggered by the experience of uncertainty.

Feeling angry is normal and 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 to help others. But anger can be destructive if it is expressed in a way that drives away people who want to help or on whom you depend.

Expressing anger by blowing up, shouting or by being cruel is hurtful. Resignation is another non-productive response. A third is to act in a hostile way, even if you don't say anything. You might refuse to talk to your spouse, for example.

Gaining control over symptoms can reduce frustration and uncertainty. For example, pacing strategies, such as taking regular rests bring greater stability, thus reducing the swings between high symptoms and times of remission, and offering some control over irritability.

Resting ahead of an event can make it more likely you can attend. A health log can enable you to see patterns in your symptoms, showing you what makes your symptoms worse. Also, feeling understood can reduce frustration. For ideas on building support, see the section on relationships.

Guilt

Looking back, you may blame yourself for becoming sick. You may scan your past for mistakes you made that resulted in your becoming ill. You might tell yourself things like "If only I had taken better care of myself," "If only I managed stress better" or "If only I had paid better attention to my body."

The truth is that no one yet knows the cause of either CFS or fibromyalgia. It is likely that factors over which we have no control, such as genetic susceptibility, will be found to play a major role in both.

We live in a society that sometimes blames people for becoming sick. There is a common idea that if we eat right, exercise and have the right thoughts, we will avoid illness. But the truth is that we are vulnerable, with no control over our genes and subject to many forces we don't understand. Don't buy in to the idea that you wanted to be sick to teach yourself something. Such thoughts only compound the suffering of chronic illness.

You may also feel guilty if you are unable to work or do as much at home as in the past. Living in a society that emphasizes productivity, guilt about doing less than before is common. It is appropriate to look at your situation in a realistic way. If you live with others, your illness probably has caused a redistribution of responsibilities in your family. But it is also helpful to remember that you are not sick by choice and illness has imposed real limits on what you can do.

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, using such strategies as getting adequate rest, exercising, taking medications to alleviate symptoms, relaxing to reduce stress, developing supportive relationships, accepting a reasonable load of responsibilities (but not more), keeping pleasure in your life, and developing new interests.

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 shutting down, allowing time to process what has already occurred. Depression may also be triggered by a long period of suffering before receiving a diagnosis. Years of inappropriate or insensitive treatment may engender a sense of hopelessness.

Depression usually eases over time. If it lasts, you will have a sense of despair and inertia. Several strategies may be helpful. First, using self-help techniques, such as those discussed in previous chapters, 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. (For a three-step process for changing your thinking, see Chapter 31.) 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 is 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 means letting go of your past life and also of the future as you had envisioned it. And it means saying good-bye to the person you used to be.

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 recovered CFS patient Dean Anderson, who said that a certain kind of acceptance was the key to his 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 means 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." 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."

Floyd Skloot, a writer who suffers from brain damage caused by a viral infection and who experiences symptoms that overlap with those of CFS, describes his journey to acceptance in his memoir In the Shadow of Memory. He writes that, after a struggle, he concluded that "since I cannot escape my body and the limits it has imposed on me, I must learn to be at home in it."

He says that, over time, he recognized "possibilities for transformation." He found inspiration in Robert Frost's description of acceptance: "Take what is given, and make it over your own way." Skloot concludes that, even though "I may seem shattered,... there are many ways in which I am better than ever...I feel reborn, hopeful."

Dean, Joan and Floyd all 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 lay in the combination of accepting the illness and disciplining themselves to live in hope within the limits it imposed on them.

Strategies for Moving Through Grief

What can help you move through grief? As described above, developing and using a self-management plan offers one way. For example, pacing increases control, thereby replacing frustration, helplessness and uncertainty with stability and predictability. Here are eight additional strategies for moving through grief.

1. Structure. Having daily and weekly routines provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss. Routine also offers a distraction from loss. Author Gail Cassidy advises, "Do not make any unnecessary major changes in your life during times of loss, as they can further add to the existing instability and anxiety."
 

2. Problem Solving. Respond to the emotions of chronic illness by problem solving. By adopting self-management strategies, you remedy the circumstances that triggered the emotions.

3. Stress Avoidance. Having to adjust to the many changes brought by illness is traumatic. In a situation in which you are already overloaded emotionally, it's best to avoid people and situations that add more stress. Gail Cassidy suggests you "stay away from negative people and situations that trigger negative emotions."

4. Support. Seek support from family, friends and others. Other people with CFS and FM can provide understanding and models of successful coping. Professional help can give you perspective on your life and help you accept the changes brought by illness.

5. Acknowledging Grief Triggers. Grief reactions are often triggered by particular circumstances, such as anniversaries, or by particular people. If your emotions intensify around the anniversary of your becoming ill or on other special dates, plan something positive for those times. If certain people or situations make you feel anxious and uncomfortable, consider limiting your exposure to them.

6. Acknowledging Loss. Some people report they found it useful to make a public declaration of loss. One person in our program wrote a Christmas letter to friends to explain why they hadn't heard from him.

He wrote, "I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before." He reports writing the letter helped him accept his limits and, paradoxically, increased his resolve to improve.
 

7. Recognizing Grief as Cyclic and Long-Term. You may experience grief repeatedly as you move through the stages of life. For example, you may experience grief if you remain single while friends get married, you remain childless while others become parents, you are not able to be the parent you hoped to be or you can't have the career you trained for.

8. Addressing Self-Pity. Almost everyone with chronic illness occasionally feels sorry for themselves. It's not surprising that we would sometimes feel overwhelmed by emotions, given the losses and stresses we experience. Here are four ways to fight back.
 

1. Recognize self-pity is a part of serious illness. Just as symptoms wax and wane, so do emotions. Acknowledging that self-pity is happening can take some of its power away. You might say something like "Oh, there's self-pity again" or "I see that I'm feeling sorry for myself today." Also, it can help to say consoling things like "I've felt this way before and it's always blown over, so probably it won't last this time either."
 

2. Rest. Strong emotions are sometimes triggered by fatigue and other symptoms. In those instances, rest may help alleviate both physical symptoms and emotions.

3. Connect with others. Reach out via phone, email or in-person. Sometimes just being in touch can change a mood. At other times it helps to have your mood acknowledged.

4. Help others. Shift your attention off yourself onto what you can do for your family, friends or others in your life.

References

Cassidy, Gail. "CFIDS, Change and Loss," CFIDS Chronicle 15(Winter, 2002): 20-21.
 

CFIDS and Fibromyalgia Self-Help website: cfsselfhelp.org/. See the Success Stories archive of the Library for the articles by Dean Anderson and Joan Buchman.

Kubler-Ross, Elisabeth. On Death and Dying. New York: Macmillan, 1969.

Skloot, Floyd. In the Shadow of Memory. Lincoln: University of Nebraska Press, 2003.