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Feelings such as sadness, worry, frustration and guilt are common and understandable responses to long-term illness. They are a reaction to the changes, limitations and uncertainty brought by illness. Because emotions are so common in long-term illness and so powerful, managing them deserves a place in your self-management plan.
 

There are two additional reasons to include managing emotions in your plan. First, CFS and fibromyalgia tend to make emotional reactions stronger than they were before and harder to control. The technical term is labile. People often say they cry more frequently, get upset more easily or have more angry outbursts than before they were ill.

As one student in our program wrote, "Just recognizing that emotions are heightened as a result of CFS really helped me. Before learning that, I was quite puzzled by why I got upset about little things."

Second, feelings generated by being ill can create a vicious cycle. For example, being in constant pain can trigger worries about the future. Worry leads to muscle tension, which, in turn, increases pain. You can interrupt this cycle in several ways, such as by using relaxation to reduce muscle tension and by changing your "self-talk" to reduce worry.

The process by which feelings intensify symptoms occurs even with positive emotions, as suggested in a comment from another person in our program who said, "I cried at one of the classes because I was so happy to be around people who understood me. Almost immediately, I had an attack of brain fog." Any experience that triggers the production of adrenaline intensifies emotions and often makes symptoms worse as well.

Feelings, like other aspects of long-term illness, can be managed. Some strategies mentioned in earlier chapters may be useful for managing the emotions triggered by CFS and FM. For example, relaxation techniques can short-circuit the feedback effect in which symptoms and emotions reinforce one another. Also, changing your thinking using Cognitive Therapy may be help.

This approach has been proven to be especially effective for treating anxiety and depression. Another general approach is to identify those situations (and sometimes people) that trigger strong emotions and plan a strategy of response ahead of time. Often, avoiding or minimizing stressful situations can reduce emotions.

In addition to self-help measures, the management of emotions can include professional help. Emotions such as depression and anxiety can be caused or intensified by changes in brain chemistry and may be treated using prescription anti-depressants or anti-anxiety medications. Also, counseling can be helpful.

Talking with a therapist about the problems triggered by your illness does not imply that "it's all in your head." Rather, counseling offers help dealing with a difficult situation. The help may include support, suggestions of coping strategies and perspective on your situation. If you think talking with a counselor might be helpful, you might seek out one who specializes in treating people with long-term illness.

Depression

Depression is very common in people with CFS and fibromyalgia. This should not be surprising, given the effects of ongoing symptoms as well as the disruptions and uncertainty created by illness. Depression may be triggered by a sense of helplessness, by fear, frustration and anxiety, by loss, or by uncertainty about the future.

Signs of depression include feelings of unhappiness or sadness, lack of interest in friends or activities, isolation, suicidal thoughts, and loss of self-esteem. Serious or long-term depression or thoughts of suicide call for immediate help from a doctor, therapist or suicide-prevention service.

There are two types of depression associated with CFS and fibromyalgia. One type is called situational depression, which means depression that occurs as a response to a particular set of circumstances, in this case having your life turned upside down by long-term illness. Self-management strategies such as those described below are usually helpful in response to this type of depression.

Depression may be biochemical as well, created by changes in the functioning of the brain. Prolonged stress may alter our biochemistry, causing depression. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication as well.

Everyone has times when they feel unhappy or sad. We can recognize that these feelings are likely to occur from time to time and plan how to respond. (See box for how one person uses planning to respond positively when she feels blue.) Here are a dozen strategies to consider for combating depression.

1. Get Help. If you are seriously depressed, suicidal or have been depressed for some time, get help now. Phone a suicide prevention center, talk to your doctor, see a psychologist or call a friend. If your situation is not urgent but depression reduces your ability to do your normal daily activities, you should consider professional help: counseling, medications or both.

A therapist can provide an outside view of your situation, help you to accept your illness and support you in your efforts to improve. If you have family tension because of illness, couples or family counseling can be helpful.

2. Get Active. Depression produces hopelessness, an attitude that becomes a self-fulfilling prophecy. Counteract those feelings by taking actions, such as those listed below, that have a good chance of helping. Being active changes mood; also, successes promote hope.

3. Establish Good Habits. Keeping to a daily routine regardless of how you feel can help counteract depression. Your daily round of activities will depend on the severity of your illness, and might include things like getting dressed, making the bed, cooking meals, taking a walk and watching a favorite TV program. Forcing yourself to do things, even if you don't want to, counteracts the inertia of depression.

4. Exercise. Exercise is a natural anti-depressant. It relieves tension, lessens stress and improves mood. Most exercise also involves being out of the house, thus bringing the added benefit of a change of scene. For ideas on how to exercise safely with CFS or FM, see Chapter 16.

5. Use Problem Solving. Taking action to solve a problem lifts the spirit as well as having practical benefits. Doing something counteracts the sense of helplessness, replacing it with a sense of control and accomplishment.

6. Rest. Some depression seems to be associated with physical symptoms, such as fatigue and pain. Resting to reduce these symptoms can also improve mood. One woman in our program described the connection by saying, "I can usually tell when I am doing more than my body can handle because I start to get depressed, not to mention short tempered and cranky. If I am well rested I am much happier."

7. Change Your Thinking. If you have a tendency to think of the worst that might happen, you can retrain yourself to speak soothingly and realistically when you're worried or depressed. For example, you can remind yourself that periods of bad feelings end. Change your mental climate by noticing what's going well and congratulating yourself on your accomplishments.

8. Do Something Pleasant. Pleasurable activities offer a distraction from symptoms and help create a good mood. The key is to find things that absorb your attention. Such activities might include reading, listening to music, sitting in the sun, taking a walk, doing crafts, solving puzzles, watching a movie and spending time with friends.

9. Stay Connected. Supportive human contact is very soothing. Calling a friend or getting together to talk, share a meal or see a movie counteracts isolation, preoccupation with problems and the low mood often associated with chronic illness. Just explaining yourself can give you perspective.

10. Consider Medications. If your depression is biochemical in origin, you may be helped by an anti-depressant medication. On the other hand, tranquilizers and narcotic painkillers intensify depression, so if you are depressed, it may be due partially to a medication side effect. If you suspect this, check with your doctor about a change of medication or a reduced dosage.

11. Help Others. Get involved with something larger than yourself to counteract isolation and preoccupation with self that often accompany illness and to rebuild self-esteem. Helping others might involve a regular commitment, like leading a support group, or something as simple as a phone call to an older relative, checking in with an old friend or trading favors.

12. Manage Stress. Controlling stress can help you manage your emotions, because stress tends to make emotions more intense. For ideas on managing stress, see Chapter 18 and the articles in the Stress Management archive.
 

Anxiety and Worry

Anxiety and worry often accompany CFS and FM. The two conditions often create a loss of control over our bodies and over our ability to plan and predict. They also bring uncertainty about the future. We may be unclear about our prognosis and wonder whether we will improve and, if so, how much. We may worry about how far down we might slide and about becoming dependent or destitute.

Here are eight strategies that are often helpful in counteracting anxiety and worry. For more suggestions, see "Fifty Tips on the Management of Worry Without Using Medication" in the book Worry by Edward Hallowell.

1. Practice Stress Reduction. Learning relaxation and other stress reduction techniques can help reduce the intensity of your emotional reactions and, by doing so, reduce the echo effect in which emotions and symptoms amplify one another. A regular stress reduction practice can also lower "background worry," the ongoing anxiety that results from long-term stress. For instructions on several relaxation procedures, see the stress management archive.

2. Use Problem Solving. Taking action to solve a problem has a double payoff. You reduce or eliminate a practical concern that is bothering you and the process of taking action reduces anxiety.

3. Change Your Thinking. If you have a tendency to think of the worst that might happen, you can take steps to short-circuit the process in which your thoughts increase your anxiety. One antidote is to retrain yourself to speak soothingly when worried, saying things like "I've been here before and survived" or "this is probably not as bad as it seems."

Also, you can do "reality checks" by testing your fears against facts and by asking for feedback from others. Learn to distinguish between toxic worry, which is unproductive and paralyzing, and good worry, which helps you plan. For more on changing thinking, see Chapter 31.

4. Connect with Other People. Feeling that you are part of something larger than yourself counteracts worry. Also, contact soothes worry, distracts you from preoccupation with problems, and provides reassurance.

5. Exercise. One of the best treatments for worry, exercise is both relaxing and distracting. For ideas about how to integrate exercise into your life when you have CFS or FM, see Chapter 16.

6. Pursue Pleasure. Reading, music, good conversation and other activities in which you can become immersed help change mood.

7. Don't Worry Alone. The act of sharing a worry almost always reduces its size and emotional weight. Discussion may help you find solutions and almost always makes the worry feel less threatening. Putting a worry into words translates it from the realm of imagination into something concrete and manageable. Seek out people who can offer support and reassurance.

8. Consider Counseling and Medications. Counseling and therapy can make worries more manageable. Also, just as drugs can help with depression, some people find that medications help them deal with anxiety. A drug will not be a complete solution to problems of anxiety, but it can be part of a comprehensive response.

A Note on Panic

About ten percent of people with CFS experience an especially severe and frightening form of fear called panic attacks. These are brief episodes of terror in which a person may feel he or she is about to die. Symptoms may include chest pain, heart palpitations and dizziness.

In spite of overwhelming fear, people survive, but they may live a life of dread, apprehensive about when the next attack will occur. This kind of fear is treatable. For more, see the books by Edward Hallowell and Martin Seligman listed in the References at the end of the chapter.

Frustration and Anger

Frustration and anger are understandable reactions to chronic illness. Being sick is frustrating, since it brings uncertainty and loss of control. The frustrations of illness vary from not being able to plan daily activities to the loss of the future you had dreamed of. Further, irritability seems to be a symptom of CFS and fibromyalgia.

Self-management can make frustration manageable. The strategies described in earlier chapters, such as pacing and stress management, help reduce the sources of frustration. For example, by using pacing you can stabilize your life, reducing the swings between high symptoms and periods of remission, and reducing the occurrence of irritability.

Stress reduction practices can help you relax, reducing your susceptibility to frustration. In both instances, techniques used for another purpose can reduce frustration as well.

Frustration can be destructive if it is expressed in a way that drives away people who want to help or those upon whom you depend. One way to respond positively is to create a situation focused on finding solutions to what is bothering you. If you are frustrated about a relationship, set up a conversation to discuss your problems.

Pick a time to talk when you and the other person will be calm and not distracted. Before the conversation, ask yourself what the other person could do to improve the situation. Then, when you meet, explain what is frustrating you. You may be able to defuse anger on the other side by stating that you realize that your illness is frustrating for everyone involved.

Here are six other strategies used by people in our program to deal with frustrations created by being ill. They focus on the goal of finding non-harmful ways to acknowledge and express anger.

1. Get Support. Expressing anger by talking it out with someone who is not the target of your frustration can release the feeling. As one student said, "The frustration and rage I felt about becoming ill has eased considerably since I joined a supportive group. I feel lucky to find a place to vent, be accepted and feel understood."

2. Write. Putting experience in words can be helpful. Psychologist James Pennebaker has found that people have fewer health problems if they write about traumatic events in a way that combines factual description and emotional reactions. (See his book Opening Up and also the article "Writing is Good Medicine.")

Giving verbal form to emotionally powerful experiences brings understanding. A related technique is to write a letter to the person you are mad at, and then tear it up instead of sending it.

3. See Things from a Fresh Perspective. The amount of anger you experience may be related to your thoughts, to how you see your situation. Imagine, for example, that you are waiting at a restaurant for a friend who is a half-hour late. You feel irritated. When the friend arrives, she reports that she was delayed because she was in an accident.

Suddenly your emotion changes from anger to concern. Here's what one student said about the effects of seeing things in new ways: "I've learned to think about things in alternative ways. By taming my thoughts, I find that a lot of anger has disappeared and this is a most wonderful feeling. I have now reached the stage where most of this new thinking is automatic."

4. Plan Your Response. If you are irritated by comments like "I'm sure you would feel better if you would try this new remedy," you can prepare a response so that such comments don't bother you. In this case, you might say something like "Thanks for your suggestion, but I'm under my doctor's care and I'm following his treatment plan" or "I'll keep that in mind."

5. Accept and Acknowledge the Feeling. Some people report that they are able to dissipate the power of anger and other feelings by naming them. The exercise produces a detachment from the feeling. As one student said, "What seems to work for me is to think about the emotion I am having. If I am angry, I will say ‘Ah, that is anger'. Then I say ‘I accept this anger.' Then I describe the anger. Is it a huge anger or smoldering anger or little anger? Then I notice how it feels in my body."

6. Get Professional Help. Sometimes talking with a counselor can ease the pressures created by having a long-term illness. If frustration and anger are making your relationships more stressful, you might consider getting professional help. Look for a therapist who specializes in helping people with chronic illness.

Guilt

Guilt is another frequent companion of people with CFS and FM. Sometimes people blame themselves for becoming sick. At other times, guilt is triggered by the sense of not contributing to the family or to society. If you experience guilt, what can you do to ease the burden it imposes? Here are seven strategies to consider.

1. Adjust Expectations. Guilt is often triggered by a difference between a person's expectations and their capabilities. You can reduce guilt by adjusting your expectations downward to match your new level of functioning. As one person said, "I've lowered my standards for myself. This isn't easy, since I'm a recovering perfectionist." Another wrote that she tells herself, "If I were caring for an injured loved one, in distress, how would I take care of her? I should treat myself the same way."

2. Reframe (Change Self-Talk). Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person says she has changed her self-talk about naps. In the past, when she took a nap, she told herself it was because she was lazy, but now she tells herself, "I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren."

Similarly, when feeling tired, you can say "This fatigue is not my fault; it came with CFS. So I don't need to feel guilty about not being able to do everything I used to." Or: "I didn't ask for FM, so why should I feel shame when it prevents me from doing things."

3. Shift Attention. Feeling guilty is inevitable, but we can control how we respond when feelings of guilt arise. One person said that she asks herself "Is this feeling productive?" In some cases, the answer will be "Yes." Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)

If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, "It's better not to go some places in your head, so I've learned how to control my own thoughts."

4. Apologize and Make Amends. Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more consideration. One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes. Others say that they have used guilt over canceling out on commitments as an impetus to be more consistent in their pacing, making themselves more dependable.

5. Educate Others. Some guilt may be triggered by how others treat you. In addition to adjusting your expectations for yourself, you can work on changing the expectations others have of you as well. This involves educating the people in your life, emphasizing that CFS and FM are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her.

6. Learn Assertiveness. Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won't do. One person in our program posts notes all over her house saying, "I'd love to but I just can't." The notes remind her what to say when people make requests. She says "seeing the notes so often ensures I remember to use this answer without feelings of guilt."

7. Practice Relationship Triage. A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go.

References

Hallowell, Edward. Worry. New York: Ballantine Books, 1997.
 

Pennebaker, James. Opening Up: The Healing Power of Confiding in Others. New York: Avon Books, 1990.
 

Seligman, Martin. What You Can Change and What You Can't. New York: Fawcett Columbine, 1993.

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20. Eight Ways to Improve Relationships

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