The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia
14: Managing Feelings
Fear, anger, grief and depression are normal reactions to serious illness. They are an understandable response to having your life turned upside down. Consider the effects of CFS and fibromyalgia:
- Limits: Fatigue, pain and other symptoms restrict what you can do and diminish your enjoyment of life.
- Frustration & Helplessness: Lack of control creates frustration and feeds a sense of helplessness.
- Uncertainty: It's often hard to plan each day and the long-term future may be a big question mark.
- Loss: Besides losing your health, you may leave your job, lose friends and sometimes even family, and also lose the future you had envisioned for yourself.
- Isolation: You may spend long periods of time alone and also feel psychologically isolated because you feel different from others.
Compounding your challenge, CFS and fibromyalgia often make emotional reactions stronger than they were before and harder to control. The technical term is labile. One student in our program wrote, "My emotions are much more sensitive than ever before. I cry more easily, and I have less emotional reserve." Another said, "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." I believe this increased intensity is part of the physical basis of CFS and FM.
The strength of emotions can create a vicious cycle. Emotions can intensify symptoms, which, in turn, may increase emotions like worry and depression. The process by which feelings intensify symptoms occurs even with positive emotions, as suggested in a comment from another participant 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. The experience helped me realize that any experience that triggers adrenaline, whether positive or negative, makes my symptoms worse."
But, like other aspects of long-term illness, feelings can be managed. Some strategies mentioned in earlier chapters may be useful for managing emotions. The stress reduction techniques described in Chapter 13 may help. Relaxation, for example, can short-circuit the feedback effect in which symptoms and emotions reinforce one another. Also, changing your thinking, as outlined in the same chapter, may be useful. The techniques described there have been proven to be especially helpful in counteracting the effects of 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. For more on this, see the stress avoidance section of the chapter on stress management.
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. In those cases, emotions may be treated using prescription anti-depressants or anti-anxiety medications. Also, you might find psychotherapy helpful. Talking with a professional about the problems triggered by your illness does not imply that "it's all in your head," but rather that getting support and perspective on your situation can be part of adjusting to the dislocations caused by serious illness. If you think talking with a counselor might be helpful, you might seek out one who specializes in treating people with long-term illness.
With those general comments about feelings as background, this chapter discusses depression, anxiety and anger. (Overcoming loss is the subject of Chapter 16.)
Depression is very common in chronic illness. This should not be surprising, given the effects of ongoing symptoms as well as the disruptions and uncertainty created by illness. In addition, for CFS and fibromyalgia patients, depression may be part of the illness, with real physical causes. Prolonged stress may alter the biochemistry of the body, causing depression.
Depression is often divided into two types: situational and biochemical. Both may apply to people with CFS and fibromyalgia. Situational depression, which means depression that occurs as a response to a particular set of circumstances, lends itself to self-management strategies such as those described below. Biochemical depression is caused by changes in the chemistry of the brain. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication as well. If you are deeply depressed about your illness, for example if you have thought seriously about killing yourself, get professional help.
There are many things you can do to improve your situation. If you are depressed, you may not want to try, but remember that depression feeds on itself. Your attitude becomes a self-fulfilling prophecy. If you believe you can get better, you will take actions, such as those listed below, that have a good chance of helping.
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 student 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."
Reach Out to Others: Simple human contact is often very soothing. Family and friends can also be important sources of support. 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 often give you perspective. As one patient said, "I find it very helpful to talk to others who are going through the same thing. For me, it's important to be able to identify with others so I don't feel so alone in this."
Get Out of the House: Just like contact with others, getting out of the house counteracts isolation and boredom, and provides stimulation.
Consider Medications: Tranquilizers and narcotic painkillers intensify depression. If you are depressed, it may be due partially to a medication side effect. Check with your doctor. On the other hand, if your depression is biochemical in origin, you may be helped by an anti-depressant.
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 benefits of a change of scene. For more on exercise, see Chapter 12.
Practice 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 power. In the words of one student, "I handle emotions better if I do something rather than passively suffer."
Change Your Thinking: Being ill over for a long time can lead to a sense of helplessness. If you change your habitual ways of thinking to be more positive, you can improve your mood, as explained in the section "Changing Your Thinking" in the previous chapter. To improve your mood, notice what's going well and what you have accomplished. Reduce the impact of a low mood by speaking to yourself in a consoling voice. In the words of one student, "If I feel down, I remind myself that life is a series of hills and valleys, and that even though I may be presently in a valley, eventually I will be once again on a hilltop."
Do Something Pleasant: Pleasurable activities counter depression and help create a good mood. Doing something in which you can become absorbed distracts from bad moods and puts you in touch with positive forces. Such activities might include reading, playing or listening to music, sitting in the sun, solving jigsaw puzzles, doing needlework, spending time with friends, being out in nature and laughing. One student said, "I use my fun activities to divert my down moods. I force myself to let go of my ‘to do' list and do something I know will set me in a better state of mind."
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 problems are less severe, consider seeing a psychotherapist. Look for one who has experience working with people who have chronic illness. 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, consider couples or family counseling.
Establish Good Daily 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
Help Others: Get involved with something larger than yourself to counteract the isolation and preoccupation that often accompany illness and to rebuild self-esteem. We usually feel better if we do something for another person. Helping others might involve a regular commitment, like leading a support group, or something as simple as a phone call to an older relative or checking in with an old friend.
Manage Stress: Controlling stress can help you manage your emotions, because stress tends to make emotions more intense. Living within your energy envelope and managing the stresses in your life will make emotions more manageable.
Fear, Anxiety & Panic
Fear and anxiety often accompany chronic illness. These reactions are common in situations in which we feel the combination of increased vulnerability and a decreased sense of power. Because of our illness, we experience a loss of control over our bodies and over our ability to plan and predict. Our illness also brings 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 fear and worry reactions. For more suggestions, see "Fifty Tips on the Management of Worry without Using Medication" in the book Worry by Edward Hallowell
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 worry.
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. Relaxation is the key. Remember: it is difficult to be worried and relaxed at the same time. For instructions on several relaxation procedures, see the previous chapter.
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. Act decisively to stop the former. For more, see the section titled "Changing Your Thinking" in the previous chapter.
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.
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 12.
Pursue Pleasure: Reading, music, good conversation and other activities in which you can become immersed help change mood.
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.
Consider Medications: 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.
Anger is another understandable reaction 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. Many patients see crankiness as a sign that they are outside their energy envelope.
Self-management can make anger 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 anger as well.
Anger can be destructive if it is expressed in a way that drives away people who want to help or those upon whom you are dependent. One way to respond positively to anger is to create a situation focused on finding solutions to what is bothering you. If you are frustrated about a relationship, 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 that is making you angry. 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.
Talk It Out: 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."
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, posted elsewhere on this website.) 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.
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.
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."
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.
Get Professional Help: Sometimes talking with a counselor can ease the pressures created by having a long-term illness. If your anger is making your relationships more stressful, you might consider getting professional help. Look for a therapist who specializes in helping people with chronic illness.
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.