The CFIDS & Fibromyalgia Self-Help Book

Chapter 13: Beyond Loss: Building a New Life

One of the greatest challenges of chronic illness is coming to terms with loss and the accompanying emotion: grief. While grief is usually associated with the death of a loved one, it can occur after any loss. And chronic illness brings with it many serious losses. We may be forced to give up our job and thereby lose income, companionship and challenge. We may lose friends and even feel abandoned by our family. We may experience loss of control over our bodies and 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 one of our biggest tasks: bringing meaning to life when so much has been taken away. Dealing successfully with loss is crucial to dealing positively with chronic illness. Working through our grief can produce a double benefit. Not only are we resolving a key psychological issue in chronic illness, we may be helping ourselves physically as well. Grieving is associated with the flare-up of symptoms, so resolving feelings of loss can help control symptoms. It may produce even more dramatic effects as well. A recent study of HIV-positive men who had lost a close friend to AIDS 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.

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

There are several common responses to the losses brought by chronic illness. Sometimes these reactions are discussed in terms of the well-known stages of death described by Elizabeth Kubler-Ross in her book On Death and Dying. Her schema has been applied to many other experiences of loss besides dying. 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 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.

As you respond to the loss of your old life, you may experience one or more of the following reactions. Each has its role in the grieving process, but each has a danger as well.

Often receiving a diagnosis of CFIDS or fibromyalgia produces relief, because finally you have a name for your suffering. But this initial reaction may be accompanied by shock and disbelief. Diagnosis means being told you have a condition for which there are no consistently effective medical treatments and no cure. 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. Self-management strategies such as pacing and stress reduction can help you replace the sense of helplessness with experiences of control.

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 feel better or 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 may be dependent. Blowing-up, expressing anger by shouting or by being cruel is hurtful. Resignation or giving up 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.

Self-management strategies can reduce frustration and uncertainty. For example, regular rests help to stabilize life with chronic illness, reducing the swings between high symptoms and times of remission. 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.

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” or “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 CFIDS 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.

Guilt can also be harmful if it leads you to having overly harsh thoughts about your present abilities. You may see yourself as a burden to others and say things like “I’m not doing my part. My family would be better off without me.” It is true that one person’s serious illness usually increases responsibilities for other members of the family and they may resent at times the additional work they take on. But if you feel guilty about the load placed on your family by your illness, it may be helpful to remind yourself that you are not sick by choice.

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 here on through such strategies as getting adequate rest, 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.

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.

Usually depression 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 Chapter 11 can help you move forward, refuting the belief that all is hopeless. Second, you can work to change your thinking so that it is more realistic and hopeful. For more, see the discussion of Cognitive Behavioral Therapy (CBT) in Chapter 10. Third, since a considerable number of CFIDS and fibromyalgia patients suffer from clinical depression, you may be helped by professional guidance and medications.

This complex reaction involves a combination of factors. On the one hand, it 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 before becoming ill. And it means saying good-bye to the person you used to be. On the other hand, acceptance also involves the willingness and even eagerness to build a new life.

This attitude was summarized by recovered CFIDS patient Dean Anderson, who was quoted in Chapter 5 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.” JoWynn Johns, another CFIDS patient mentioned in the same chapter, described a similar change in thinking. The turning point for her occurred when she changed her goal, letting go of the idea of recovery and replacing it with a focus on feeling better.

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.”

In summary, all three came to an acceptance of the reality of their illness and the need to lead a different kind of life. All found the key to improvement lay in the combination of accepting the illness and disciplining themselves to live with hope within the limits it imposed.

What can help you move through your time of grief?

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’m feeling sorry for myself.” 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.”

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

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.

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

You didn’t choose to be sick, but you choose your response. By deciding how you are going to live with illness, you can make your goal living the best life possible under the circumstances. In doing so, you shift from a negative outlook focused on what you have lost to a positive one: where you want to go and who you want to be. This shift was described by actor Christopher Reeve, who was paralyzed from the shoulders down in a riding accident in 1995. He wrote that over time he “began to come up again” as one does from a dive in deep water. He gradually stopped wondering, “What life do I have?” and began to consider, “What life can I build?”

The first key to building a new life is to shift focus from past to future, from what is no longer possible to what can still be achieved. However severe your illness, the losses you have experienced are not total. Whatever your losses and limits, they still leave you with options and choices. By focusing on what remains under your control, you can maintain a positive spirit and increase the likelihood of improvement.

There is evidence that a positive attitude has health benefits. It is easy to see why. A positive attitude reduces frustration and stress. This attitude does not deny pain and suffering, but rather puts emphasis on problem solving and finding what works.

Patti Schmidt described how she reoriented her life in her article Coming to Terms with a Life I Didn’t Plan. 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. She decided that given her intolerance of exercise, she would not fight her weight gain. Also, she decided to accept that she wouldn’t be the homemaker she had been before. 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.

Some people have found 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 effects 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 is not about always looking at the bright side or denying pain and suffering. Rather, it 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. For other accounts of patients finding meaning in illness and building a new life, see the Success Stories section of the Articles Archive.)

Having less energy means doing less. Of all the things you want to do and that others expect you to do, which will you choose? There is a need to prioritize. One way to help you prioritize is by keeping for one week a chart of “How I Use My Time.” For each hour of the day, jot down one or a few words to describe how you spend your time, using categories that are meaningful to you. Here’s one list: work, housework, family, spouse/partner, friends, exercise, hobbies, TV/entertainment, time alone, rest and sleep. At the end of the week, analyze to see if your use of time is consistent with your values by rating each as “OK,” “+” (want to do more) or “-” (want to do less).

This is how one class member described her process:

I have always been a “Type A” personality. I was struggling with myself to maintain my “everything must be perfect” mentality. I was killing myself trying to live up to my own set of standards. I knew I had to make changes and listen to my body if I was ever going to see any improvement in my health. I started by listing what was important, what absolutely must be done and worked from that perspective. In the beginning this took a lot of discipline. It was amazing how much energy I used doing tasks almost compulsively. I’m not sure how many better days I have because of [doing less] but I do know that I would be in worse shape [if I hadn’t changed]. I discovered how to relax, how to do nothing and how to do something just for pure enjoyment.

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 JoWynn Johns expresses 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.

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 languished. 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 illness and to expand their area of control. Still others have found meaning in 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 CFIDS and fibromyalgia. Whatever they chose, they found new ways to bring meaning to their life.

One way to bring meaning is to describe what you’ve learned about life from being ill, summarizing your understanding of how to live with long-term illness. One student in our program wrote: “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.”

JoWynn Johns expressed her attempt to bring meaning to her new life by stating her rules for living well with chronic illness:

Chronic illness has profound effects, changing every part of our lives: how much we can do, our ability to work, 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 CFIDS 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.

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

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