The ongoing stress of long-term illness triggers strong emotions. Feelings such as anger, fear, grief and depression are normal reactions to serious illness, understandable responses to a situation in which life has been turned upset down, predictability replaced by uncertainty, and control often replaced by frustration and a sense of helplessness. In this chapter, we will discuss stress and also describe ways to deal with the emotions triggered by Chronic Fatigue Syndrome and fibromyalgia.

Recognizing and Managing Stress

Stress is created both in crisis situations and when people are under long-term pressure. Having a loved one struggling with long-term illness is a situation of long-term stress. Signs of stress include physical symptoms such as muscle tension, headaches and fatigue; problems getting restorative sleep; and emotional outbursts. 

There are many ways that family and friends can respond to the stress created by CFS and FM, lessening both its intensity and effects. Here are five of them.

Relaxation

When we become stressed in the face of challenge, we often respond with a fight-or-flight reaction. Adrenaline flows, and we feel charged up. If the challenge is brief, the initial reaction is followed by relaxation. If, however, you feel yourself to be under constant pressure, as you may if you feel responsible for another’s care, your body stays in a state of tension, which can manifest as muscle tension, headaches, fatigue, sleep problems and anxiety. By letting go, using relaxation, you counteract the effects of the fight-or-flight response.

There are many good relaxation and meditation tapes and programs available today. You can find step-by-step instructions for several relaxation procedures in the stress management chapter in our textbook, in the section called “Relaxation Techniques.” But other, less formal approaches can help, too. These include exercise, attentiveness to breathing, baths and hot tubs, massage, rest and listening to relaxation tapes.

Problem Solving

Taking practical steps to improve a situation has a double payoff. You reduce or eliminate a practical concern and the process of taking action reduces anxiety and worry. Doing something counteracts the sense of helplessness, replacing it with a sense of control. (For more, see the section on problem solving in chapter 3.)

Positive Experiences

Doing things that are enjoyable is a stress reducer. Positive experiences lower frustration and counteract the sense that illness means only suffering. Here are five types of positive experiences, all of which can help lower stress.

Pleasurable Activities. Doing things that bring you pleasure can distract you from stress and reduce preoccupation with problems. Examples include seeing a movie, spending time in nature, listening to or playing music and reading.

Exercise and Movement. Exercise is a natural stress reducer, since it causes your body to produce endorphins and other soothing body chemicals. A similar effect can be obtained through other forms of movement.

Talking and Being Listened To. Talking to someone you trust provides reassurance and connectedness that dispel worry.

Music, the Arts and Other Absorbing Activities. Listening to or playing music or engaging in other artistic pursuits are good stress reducers. The same can be said of reading a good book or seeing an engrossing movie. The key is to find an activity in which you can become absorbed.

Laughter and Humor. Watching a funny movie or laughing with friends can be a great release. Like exercise, laughter promotes the production of endorphins. Research suggests that it can strengthen the immune system, counteract depression and even provide a substitute for aerobic exercise

Mental Adjustments

Your thoughts can be another source of stress. For example, you may have unrealistic expectations. If you believe that you can protect the patient in your life from suffering, you may feel continually disappointed in yourself. If that’s the case, you can reduce your stress by changing your expectations. Becoming aware of and changing the standards you have for yourself to make them more realistic reduces stress. For a description of how to change your expectations for yourself, see the article Taming Stressful Thoughts.

Support

Being around someone who has a long-term illness is inherently stressful and often isolating. Having people in your life who understand and respect you is a balm to the soul. Just being listened to and feeling connected to others is healing. Beyond that, talking to another person may help you clarify your situation or the response you receive may enable you to see your life in a different, more constructive way. Sources of support include family members, friends, clergy and therapists. Support also means practical assistance, which might include such things as volunteer or paid help with tasks such as shopping, cooking or housecleaning.

Feelings and the Stages of Illness

The process of adjusting to long-term illness can be viewed as having four stages. In the first stage, which occurs during the first weeks to several months after symptoms first appear, patients and those around them view symptoms as signs of a short-term illness. This is understandable, because both Chronic Fatigue Syndrome and fibromyalgia manifest with symptoms common to many acute illnesses, such as fatigue, widespread pain and impaired thinking.

After a while, typically two to six months, stage two begins, as patients, family and friends recognize that the patient is not getting well and begin worry that they never will. A diagnosis of CFS or fibromyalgia marks the start of the third stage, a period in which patient and family gradually come to see the illness as long-term and perhaps even permanent. This stage typically lasts several years. The diagnosis triggers a series of emotional reactions, experienced by each person in his or her own way.

Denial and Disbelief

By giving a name to suffering, a diagnosis of CFS or fibromyalgia usually produces relief, but this initial reaction may be accompanied by shock and disbelief. A diagnosis of either illness means a person has a condition for which there is no cure and no consistently effective medical treatment. 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, a way to keep hope life while allowing the family time to adjust to all that is different and to the uncertainty brought by the illness.

Different views of the seriousness of CFS and FM can create conflict. Sometimes the person who is ill does not feel understood by those around her; in other cases, family and friends feel frustrated because they believe the patient is not fully accepting the illness. Education and discussion are two ways to respond to such conflicts. Education means efforts by all involved to inform themselves about CFS and FM. (For some places to start, see the resources mentioned in the next section.) To work towards a shared understanding of the patient’s situation, consider having both you and the person who is ill rate the patient on our Rating Scale.

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 one day will unfold, can be a source of tremendous anxiety. You and the family member who is ill may ask what your lives will be like if one person has a life of pain or how you will survive financially.

Such fears are normal. One of the most common and helpful responses is education: 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 regarded as fatal. Educational resources include websites, books, patient organizations such as the CFIDS Association of America (www.cfids.org), the Arthritis Foundation (www.arthritis.org) or the National Fibromyalgia Association (www.fmaware.org), and doctors. For a list of resources, see the article Educate Yourself.

A second strategy is to connect with other families who are dealing with CFS and FM. Success in living with long-term illness is as much, or more, a question of adaptations by patients and their families as it is use of treatments. Other families who live with CFS or FM can offer ideas about how to solve common problems. Also, knowing people who are living well with CFS or FM helps dispel fear by offering models of successful adaptation. For information about linking up with other patients, see the article Finding Support Groups and Doctors.

Third, developing a plan for dealing with CFS or FM can help reduce fear. Such plans usually involve pacing, stress management and mental adjustments. The use of pacing, often in combination with medications, can bring stability, thereby replacing uncertainty with predictability. Because fear is usually accompanied by muscle tension, using relaxation procedures can break the connection between emotion and physical reaction.

Because anxiety usually produces negative thoughts, being attentive to self-talk and changing it to be less fearful and more realistic can help. (For more, see the article Taming Stressful Thoughts.) Another self-management tool for reducing fear and gaining control is the health log. By keeping a daily record of activities and symptoms, the person with CFS or fibromyalgia can recognize what makes symptoms better and worse.

Anger

Frustration and anger are other common reactions, for both the person with CFS or FM and for those around her. Sources of frustration for family members include having to take on extra responsibilities, a helplessness from struggling with something that can’t be fixed, and living with a person who has less energy for everything from chores to relationships.

Feeling angry in response to long-term illness is normal. Life is not fair and long-term illness is often frustrating and depressing. Anger can have positive effects if it motivates you to find solutions to your problems, but it can be destructive if it is expressed in a way that alienates you from others or drives away people who want to help. Use of the communication tools described in the previous chapter may help. 

Also, getting an outside perspective can be useful. Many people with CFS and FM, and their families, seek help from professional counselors. They may go separately, together, or have both individual and couple’s sessions. Talking to a counselor does not imply that the your family member’s illness is imaginary or that you are crazy. Rather, getting support and perspective, and learning coping strategies can be part of adjusting to the dislocations caused by serious illness. If the idea of seeing a counselor is appealing, consider one who specializes in treating people with long-term illness and their families.

Another strategy for reducing frustration is to address symptoms. Gaining control reduces 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.

Sadness and Depression

Depression and feelings of sadness are common with chronic illness, natural responses to the losses brought by illness and the recognition that the condition is likely to be long-term. The signs of depression may be obvious or subtle. A persistent mood of pessimism or thoughts of suicide are clear signals of depression and should lead to prompt professional help. But depression may be less obvious, indicated by signs such as a higher than normal level of fatigue, sleep problems, lack of interest in activities or friendships that used to bring pleasure, unintended weight change, and an increase in anger and hostility.

Depression is often treated with a combination of self-management strategies and professional help. The latter involves counseling, medications or both. Self-help techniques include exercise, stress management, pleasurable activities, strengthening relationships, problem solving and changing your thinking. The last involves learning to reframe you thoughts so that they are both more realistic and hopeful. (See the article Taming Stressful Thoughts.)

Working Through Loss

CFS and fibromyalgia usually bring many serious losses. The patient loses control over his or her body. Both the patient and family members experience the loss of friends and loss of valued activities. The family often loses income and companionship. Often dreams are abandoned, so that both patient and family lose the future they had envisioned for themselves. What can help you move through and beyond loss? In addition to the self-help strategies discussed in the last several sections, consider the following:

Use problem solving. Respond to the emotions of chronic illness by problem solving. By adopting self-management strategies, you can regain control and begin to move forward. 

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.

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.

Respond positively to self-pity. Almost everyone involved with chronic illness occasionally feels sorry for themselves. It’s not surprising that people sometimes feel overwhelmed by emotions, given the losses and stresses brought by long-term illness. Here are three 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) 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.

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

Recognize Grief is Long-Term Process. You may experience grief repeatedly as you and the family member who is ill move through the stages of life. Depending on when your family member became ill, you might feel loss at several times. You may experience grief if you remain childless while others become parents, if you are not able to provide the parenting you hoped, or if you can’t have the career or the retirement you had planned.

Acceptance and Adaptation

After several years to a decade, people with CFS and FM and their families enter the fourth and last stage of living with long-term illness. Recognizing that the patient’s old life is not likely to return, they accept the limitations and adjust their expectations. This is the stage of acceptance and adaptation.

Acceptance is a complex reaction involving a combination of factors. On the one hand, it means recognizing that life has changed, probably permanently. It means saying good-bye to the person the patient used to be and to the future they and you had envisioned. 

On the other hand, however, acceptance also involves the willingness to build a new life. This attitude is summarized by recovered CFS patient Dean Anderson, whose story of recovery is posted elsewhere on this site. He writes that acceptance was not resignation. Rather, it meant “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 meant finding ways “to be productive and [to] find fulfillment under unfamiliar and difficult circumstances.”

A woman in one of our self-help groups, adapting an idea she had read, described the combination of shock and adjustment in an essay titled “Welcome to Holland.” She wrote that having CFS was like planning a trip to Italy and, when the plane landed, being told “Welcome to Holland.”

"Holland!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy.” But there's been a change in the flight plan. You have landed in Holland. And there you must stay. The important thing is that it's just a different place. You must buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would not otherwise have met. It's slower paced than Italy, less flashy than Italy. But after you've been there a while, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

So, welcome to Holland. Along with the patient in your life, you have landed in an unexpected destination. You have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have probably lost some of companionship and, instead, may have taken on new responsibilities. But, like the person in our class, you have a choice to dwell on what you have lost or to seek out new possibilities.

CFS patient JoWynn Johns described how she recognized and responded to this challenge when she wrote in the article What Recovery Means to Me,

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.

In our experience, patients and their families have used three strategies to build a new life. The first is to adjust their goals to the limits imposed by illness. This is sometimes called finding a new normal. One spouse told us that, once he had accepted his wife’s limitations, he could adjust his expectations and find new ways to do things together. As mentioned earlier, they now go out to dinner and a movie instead of hiking and camping. 

A second, related strategy is to remember to include pleasure in life, to offset all the suffering and deprivation brought by illness. 

The third is to turn attention away from what has been lost to focus on new interests and new goals. A couple, in which the wife is housebound, have taken up the study of music using a course on DVD. 

In Conclusion

Chronic illness has profound effects, changing every part of life: how much a person can do, people’s moods, their relationships, their finances, their hopes and dreams. Even though you may not have the ability to change the fact that someone in your life has Chronic Fatigue Syndrome or fibromyalgia, there are many things you can do to improve their, and your, quality of life.

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