CFS and fibromyalgia usually bring many serious losses. We often experience loss of control over our bodies, loss of friends and loss of valued activities. We may be forced to give up our job and thereby lose income, companionship and challenge. And, often we have to abandon dreams, thus losing the future we had envisioned for ourselves. 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 two of our biggest challenges: keeping hope alive and bringing new meaning to life when much has been taken away.

We will look at loss from two perspectives, first discussing how to work through loss and then describing how to move beyond loss to build a new life.

Responding To Loss

The emotional reaction to loss is 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. 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 recent 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, because it gives a name to suffering, but this initial reaction may be accompanied by shock and disbelief. A diagnosis of either illness 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 disease by continuing to lead a busy life or seeking a cure by going from doctor to doctor or by trying special diets or treatments.

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, or sometimes even how today will unfold, can be a source of tremendous anxiety. You may feel your life is out of control.

Developing a self-management plan can address fear 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, using relaxation procedures can break the connection between emotion and physical reaction. It is difficult to feel anxious while physically relaxed. Third, because anxiety usually produces negative thoughts, being attentive to self-talk and changing it to be less fearful and more realistic, as described in Chapter 13, can help. Fourth, educating yourself about your illness can help you by replacing worries with facts. For example, some fears about the future may be alleviated by knowing that fibromyalgia is not a progressive illness and that neither CFS nor FM is fatal. (For more strategies, see the discussion of anxiety in Chapter 14.)

Anger
Frustration, rage, and envy 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. Symptoms wax and wane, making it difficult to plan. Canceling out on work or social commitments can create problems on the job and complicate relationships. Bosses, family and friends may find it hard to understand why you cancel at the last minute or can’t come to work consistently.

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: “Why should I try? Nothing works.” Another 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, often by the use of medications and lifestyle changes, can reduce frustration and uncertainty. For example, pacing strategies, such as taking regular rests, help to stabilize life with chronic illness, 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 previous chapter.

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 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, relaxing, 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, 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 more, see “Changing Your Thinking” in the Chapter 13. Third, since a considerable number of CFS and fibromyalgia patients suffer from clinical depression, you may be helped by professional guidance and medications.

Acceptance
This complex reaction involves a combination of factors. On the one hand, acceptance means recognizing that life has changed, perhaps permanently and certainly for an extended period of time. It 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.

On the other hand, acceptance also involves the willingness to build a new life. This attitude was summarized by recovered CFS patient Dean Anderson, who was quoted in the chapter on pacing as saying that for him the key to recovery was a certain kind of acceptance. 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.” 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,” which is posted at our website. (See References at the end of the chapter). 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.”

CFS patient and writer Floyd Skloot 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.”

All three 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.

Strategies for Moving Through Grief

What can help you move through grief? In addition to the self-help strategies discussed in the last section, consider the following:

Use 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.

Keep structure in your life
Having a routine provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss. Writer Gail Cassidy suggests that routine also offers a distraction from loss. She 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.”

Avoid stress
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.”

Acknowledge 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. The letter said, in part, “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.

Respond positively to 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

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.

Respond to 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.

Get Support
Fellow patients can provide understanding, support and models of successful coping. Professional help can give you perspective on your life and help you accept the changes brought by illness.

Recognize Grief is Long-Term Process
You may experience grief repeatedly as you move through the stages of life. Depending on when you became ill, you might feel loss at several key times in your life. 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 planned.

Creating a New Life

While a few patients recover, most people with CFS and fibromyalgia face the prospect of lifelong losses and limitations. Although coming to acceptance often takes years, most eventually recognize that their old self has disappeared, replaced with a more limited self. The losses brought by long-term illness create a challenge: who are you if you can’t be the person you used to be?

CFS patient JoWynn Johns described how she recognized and responded to this challenge when she wrote, “Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS….By giving up the need to have what I used to have, by giving up the idea of recovery as return to a past way of living, I have created a good life.”

Usually this shift occurs gradually, but sometimes a single experience brings home the finality of loss. A fibromyalgia patient in our program reported that one day she was talking to a friend about her active life before becoming ill and how she had to accept that she couldn’t be as active as she used to be. She described her life before illness as including hiking, rock climbing, caving, cross-country skiing, backpacking, orienteering, abseiling and snow camping. The friend responded by saying, “Yes, that was another life.” The patient said her friend’s comment was “like someone switching on a light in my brain. Intellectually, I had accepted the loss and I had grieved, but I felt that something was incomplete - suddenly ‘that was another life’ gave me a file in which to put the old life.”

Long-term illness triggers a spiritual journey. Illness brings pain, suffering and loss, but it also provides an opportunity to reevaluate life and recast it in a new way. Many students in our program have said that, even though they would not have chosen their illness, they have learned valuable lessons from it. They believe, and I agree, that it is possible to live a rewarding life with long-term illness, even though it is a different kind of life.

Reframing: Focus on Gains & Improvement
People in our program have echoed JoWynn’s sentiments, finding their own ways to give positive meaning to their new lives. One approach to the transition is to focus on gains that have occurred because of being ill. One student in our program wrote, “One thing that has helped is to appreciate the positives in my life. I am fortunate to have a loving and supportive husband, a wonderful son and lovely daughter-in-law, and other friends and family who accept me as I am and value our relationship.” Others say they prefer the person they are today to the one before their illness.

Even though I grieve the loss of self, the new normal me is a kinder, gentler, and more caring person.

I actually like the new me better than the old me. I'm much more pleasant to be around and I'm generally more content with life.

Others say they have a better life today than before:

I am glad for some of my losses. As I progress through this autumn of my life I am happy to shed many of my old fears, prejudices, and resentments. I replace them with confidence, tolerance, and love.

In many respects, my life now is better than it was before I got sick. I know what my priorities are. My social calendar is not packed with activities, but rather just those that are important to me. And I'm not as stressed as I was…. I'm almost thankful for having fibromyalgia (and the other related things) because the positives far out weigh the negatives!

Gratitude
As reflected in the quotes above, some people with CFS or FM find it helpful to look at their illness in a way that draws their attention away from loss toward what they have gained through being ill and what they can do in the future. They may even come to see their illness as a gift. Reflecting on the benefits of keeping a gratitude journal, Joan Buchman wrote that, during the time she kept the journal, she learned “to treasure what I have right now.” Through the journal, she recognized that before becoming ill, “I was not on a track for happiness and peace. Because of FMS, I have had the opportunity to find out what is really important for me to live a fulfilling and meaningful life.”

For her, gratitude does not mean that she always looks at the bright side or denies pain and suffering. Rather, for her, gratitude is “appreciating what you have and making the most from it. It’s about finding out that you have more power over your life than you previously imagined.” (See her article “The Healing Power of Gratitude,” posted at our website. The Success Stories section of the site includes other accounts of patients finding meaning in their illness.)

Adjust Goals to Your Abilities
Patient Patti Schmidt described how she reoriented her life in her article “Coming to Terms with a Life I Didn’t Plan,” also posted on our site. She writes that, after acknowledging that her illness had changed her life irrevocably, she was left with the question: Now what? She made some changes in thinking to accept that there were some things that had been important that she would have to let go of, but she also recognized that she still had what was important to her: her family and the ability to contribute something to others. She decided to focus on those things she could do, rather than on those she couldn’t, adjusting her goals to her abilities.

Nourish Yourself

Between what you feel you have to do and the suffering imposed by illness, it is easy to let positive things slip out of your life. But we all deserve pleasure and enjoyment. If you have things to look forward to, you help yourself in an important way. The enjoyment of positive experiences reduces stress, replacing it with pleasure and building a positive sense of self-esteem.

There are many ways to nurture yourself, many forms of pleasure. It may be physical pleasure that comes from exercise, laughing, taking a bath, listening to or playing music or from intimacy. Or it may be the enjoyment and satisfaction from keeping a garden, painting a picture or completing a crafts project. Or it may be the mental pleasure that comes from enjoying the beauty of nature or from reading a book or the spiritual satisfaction of meditation or prayer. Here’s how one person expressed the pleasures opened to her by solitude:

Even though I have always been a lover of the arts, in solitude I’ve developed a more profound appreciation of them. I respond more wholeheartedly to familiar and new literature; to the pictures, wood carvings, and pottery in my room; to the prints, photographs, reproductions of paintings, and needle art I study in books and journals; to music...Experiencing these works alone, without distraction, I find they touch me more deeply, transforming my way of seeing and inspiring my imagination.

New Interests and New Meaning
A powerful antidote to loss is to develop new interests and, from that, a sense of purpose and new meaning. Some patients have taken the opportunity to return to art, crafts or other hobbies that had languished when they were busy with career and family. Taking advantage of newly available time, they start new activities or resume projects they had put aside during their earlier, busier lives. Others see their illness as a challenge and find a sense of purpose in trying to understand their illness and to expand their area of control. Still others have found meaning through helping others. They may do it through participating in a support group or by offering help informally. Some have started groups or lobbied for better recognition and research funding for CFS and fibromyalgia. Whatever they chose, they found new ways to bring meaning to their life.

One way to bring meaning is to reframe your life in a realistic, yet positive, way. In the words of one student in our program:

I am not the person I was, and I probably won’t have the same kind of life I thought I would. But whether or not I recover, I try to bring as much meaning as possible to my life now and to value the core qualities in myself that have not changed. I try to remind myself that I still make a difference to other people, and I can still contribute to their lives.

In Conclusion

Chronic illness has profound effects, changing every part of our lives: how much we can do, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. Even though we may not have control over the ultimate outcome of our illness, there is much we can do to improve our quality of life.

This book did not contain a cure for CFS or fibromyalgia. Rather, it outlined coping skills that can help you take responsibility for those things that are under your control. Many students in our groups have improved their quality of life and some have increased their level of functioning substantially. I hope you can gain the ability to manage your illness better, creating the most favorable possible circumstances for your body’s healing powers to carry you to whatever level of improvement is possible in your unique situation. And I also hope that, even though you may not have the life you expected, you can build a good life for yourself nonetheless.

References

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

CFIDS and Fibromyalgia Self-Help website: See the Success Stories archive for the articles by Dean Anderson, Joan Buchman, JoWynn Johns and Patti Schmidt. See Coping Strategies archive for articles on solitude and guidelines for living well with chronic illness.

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

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