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CFIDS/Fibromyalgia ToolkitChapter 2: The Power Of Self-HelpThe Challenges of CFIDS and Fibromyalgia as Chronic Illnesses CFIDS and fibromyalgia are long-term, or chronic, illnesses. Unlike short-term illnesses, which allow us to resume our previous life after a brief interruption, CFIDS and fibromyalgia impose long-term limits on us and force us to adjust to them. They are comprehensive in their effects, changing every aspect of our lives: our ability to work, our relationships, our emotions, our dreams for the future, and our sense of who we are. Also, our illnesses bring great uncertainty, both on a day-to-day basis as symptoms wax and wane, and over longer cycles. We all ask: will I improve? if so, how far and when? Because of the uncertainty and limits, there is often a high level of frustration and a sense of helplessness. When we face a chronic health problem like CFIDS or fibromyalgia, it may be useful to ask two questions: 1) What help can I expect from the health care system? 2) How can I help myself? Before getting a chronic illness, our health problems may have been ones in which it was appropriate to focus on the first question. If medical solutions are readily available, our role in healing can be limited. But the situation with CFIDS or fibromyalgia is different. Unfortunately, there is not yet a cure for either illness. And there is no standard treatment for either one. That is, there is no commonly used medication or procedure that has been shown to be widely helpful. Partial symptom control is possible, but, when successful, is usually achieved by trial and error, and may not be lasting. Because medical help is usually quite limited with CFIDS and of moderate value with fibromyalgia, we are challenged to assume more responsibility for learning how to live well with our condition. The program you will learn through this book was developed based on the belief that a self-management approach can be particularly useful for our illnesses. Since the help currently available from the health care system is often very limited, it may be productive to explore the second question from above, to ask what we can do to help ourselves. Self-Help Programs For Chronic Illness CFIDS/Fibromyalgia Self-Help is based on two different approaches to self-help. The first approach is expressed in programs for chronic illness developed over the last two decades by professionals in medicine and public health. These include courses for people with arthritis, heart disease, chronic pain, and cancer. Here’s a sample of these programs and what patients have achieved through them. (See note on Sources at end of chapter for specific references.) Arthritis The Arthritis Self-Help program, which was developed at Stanford University in the late 1970’s, is taught as a six session class. Those who have taken the course have reduced their doctor’s visits by over 40% and have experienced significant reductions in pain and depression. More than 200,000 people have taken the class. The course is taught by trained volunteers, many of whom are arthritis patients. The program shows that it is possible to provide significant help to people with chronic illness at low cost using trained volunteers. Skin Cancer A similar program for people with melanoma (a skin cancer) has been developed by researchers at UCLA. It is also taught as a six session course, and has shown impressive results. Patients in the program have a longer time to recurrence and an increase in life expectancy in comparison to other melanoma patients. Again, a relatively brief program (12 hours) has been shown to have dramatic results. Chronic Pain A Harvard-based program for people with chronic pain has also achieved good results. Patients in the program have reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain. Breast Cancer In perhaps the most famous experiment in mind-body medicine, Dr. David Spiegel’s group at Stanford found that women with advanced breast cancer who received standard medical care and were part of his support groups lived twice as long as women who received standard medical care alone. His work shows the powerful effects of group support. Meeting with others who share a similar condition, especially if it occurs in an environment of respect and understanding, can have dramatic effects on a person’s coping skills, self-confidence, and even survival. Dr. Spiegel’s program assumed that their patients had a limited time to live. Instead of trying to prolong patients’ lives, Dr. Spiegel and his colleagues focused on helping women improve their quality of life. They were successful, and, ironically, their focus on helping people to live well produced a dramatic effect on length of life as well. In Summary All these programs are based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. As explained below, the CFIDS/Fibromyalgia Self-Help program has adopted a number of the principles of these medical self-help programs, focusing on the combination of a set of tools (a program for change) with a supportive environment. Also, like the breast cancer program, we have tried to focus on finding what we can do to feel better, accepting that recovery may not be under our control. The Self-Help Movement: 12 Step and Other Programs The second model of self-help that inspired the development of the CFIDS/Fibromyalgia Self-Help program was the Self-Help movement, especially its expression in 12 Step groups. This model is based on the idea that people who share a common condition can band together to help one another. Typically, groups of this type provide tools and structure. Tools means a set of ideas which can help you improve your life. Structure means that the group provides support, encouragement and nurture to help a person change. We view ourselves as being in that tradition as well. One of our first leaders wrote an article titled "Support for Changing Our Lifestyle." 1 The title is a good summary of the program. We are trying to teach people how to manage their illness through making adjustments in their daily habits and routines. This is a gradual process that may involve setbacks. Some setbacks may be due to the waxing and waning of the illness, but others are probably due to the challenges of personal change, of taking responsibility for those aspects of the illness that are under our control. To quote from the article: "The CFIDS Self-Help Course [the title at the time the article was published] provides the information and the structure needed to facilitate changing one’s habits and routines---something that is hard for all of us. Not a prescription for what to do, the course is a process of discovering for ourselves what we uniquely need to change in our lifestyle. "Just as Weight Watchers and Alcoholics Anonymous provide the information and structure people need to change their eating and drinking habits, this course provides what people with CFIDS [and those with fibromyalgia] need to change our daily routines and find a way of living that helps to reduce symptoms and that, in some cases, has led to significant recovery. While some of us can do it on our own, many others find that mutual support is the necessary ingredient for success in changing ourselves." What Can You Achieve Using Self-Management? Given that CFIDS and fibromyalgia are chronic illnesses, what might you expect to achieve through self-management? Part of the answer to this question depends on your prognosis. People with our illnesses have a great variety of outcomes, as discussed in Chapter 1. Chances for improvement and recovery depend on which illness you have and the severity of your case. A self-management approach can be helpful for many people. For those destined to recover, self-help can speed up the process. It can also assist those who are improving to gain more. The program has also helped improve quality of life for those whose functional level did not change. Though still limited, they have learned to control symptoms, to bring stability to their lives, and to increase the amount they can accomplish. Self-management is not a cure for CFIDS or fibromyalgia. At this point, there is no cure for either illness. Rather, the book and course are offered as aids to coping that may for some people also promote improvement and even recovery. You are likely to run into obstacles in trying to follow a self-help approach. Both CFIDS and fibromyalgia can wax and wane unpredictably. Cognitive problems like difficulty concentrating or memory lapses can make change difficult. Unforeseen events, such as other illnesses or the need to move, can derail you for a time. You may encounter inner obstacles to making behavior change. And relapses are both frequent and inevitable. Thus, improvement can be slow and requires patience. In response to these aspects chronic illness, we ask people in our program to suspend expectations about recovery and instead focus on what they can do to make their lives better now. Like the breast cancer groups, we believe that perhaps the most helpful approach is to focus on what we can do to improve our quality of life. The CFIDS/Fibromyalgia Self-Help Program: Support and Tools The CFIDS/Fibromyalgia Self-Help program is similar to several of the programs described earlier in the chapter. It is a self-management program based on scientifically-proven principles. Like the arthritis, melanoma and chronic pain programs, it has a fixed course and focuses on learning new coping skills. Like the arthritis program, it is volunteer led. And, like the breast cancer program, it attempts to offer a supportive atmosphere and to focus on improving quality of life. The program aims to combine support with tools for managing chronic illness. Support means we attempt to create a safe environment in which people feel accepted, understood, comforted, and respected. Tools means we aim to have a problem-solving orientation focused on a set of ideas and techniques that provide a structured program for self-management. The program is designed to guide you to creating an individualized plan for managing your illness. We hope to increase your self-confidence in coping with your illness by helping you to understand your unique case of CFIDS or fibromyalgia, your individual life situation, and how they interact. The course is built on three central ideas: 1) belief in the power of self-help, 2) the use of pacing as a means for reducing symptoms and improving quality of life, and 3) the use of multiple coping strategies. Self-Help As chronic illnesses, CFIDS and fibromyalgia challenge us to take responsibility for the parts of our illness over which we have control. The program is based on the assumption that we can change the effects of the illness and perhaps the course of the illness through our efforts. The course aims to help you build on your existing coping techniques, and to introduce you to new techniques as well. Through applying the principles of the program, you can create a self-management program for your own particular situation. Pacing or Living Within Limits People with CFIDS and fibromyalgia often feel they are living on a roller coaster, swinging between intense symptoms and periods of rest. Through using the technique of pacing --finding the proper balance of activity and rest-- you can reduce your symptoms, reduce the frequency and severity of relapses, and may be able to expand your limits. Pacing is based on the recognition that because we have less energy now than before we became ill, it is easy to be more active than our energy limits allow, to experience an intensification of symptoms, and then to recover through rest. We call this the push and crash cycle. Our program can help you discover your limits and show you how to live successfully within them. Using Multiple Coping Strategies Our symptoms often have several causes besides the illness, including poor sleep, stress, inactivity, poor nutrition, and depression. These other factors may be at least partially under our control. By using a variety of coping strategies, each tailored to a particular cause or factor, we may be able to gain some control over our symptoms. For example, the symptom of fatigue may have several causes. In addition to being a symptom of the disease, fatigue may be caused by poor sleep, inactivity, allergies, depression, and stress. These different factors may interact with one another to increase the total fatigue we experience. By analyzing the causes of your fatigue, you can develop strategies to combat each one. We will look at several causes of symptoms, identify which may be under our control, and learn techniques for reducing their effects. Improving sleep, for example, usually has a good effect on fatigue. Likewise, reducing stress can be very beneficial. Support Chronic illnesses, especially ones that are hidden and often stigmatized, are isolating. Contact with fellow patients can counteract isolation and provide an experience of being acknowledged and supported. Such contact can be a way to experience feeling understood, comforted and inspired. Also, it can provide an opportunity for you to help others. Support might come from phone calls to one or two fellow patients, participation in a support group, visiting online chat rooms, posting on Internet message boards or perhaps being part of one of our classes. I suggest you evaluate such experiences based on the effects they have on you. Such contact, especially in a group, is very powerful. When negative, it can reinforce isolation and a sense of victimhood. But in a supportive atmosphere, it can be helpful and even healing. Contact with other patients may leave you feeling upset at times, but the discomfort should be followed by a new perspective on your situation, and increased confidence about your ability to manage the illness. We believe that the setting in which the CFIDS/Fibromyalgia Self-Help program is taught is just as important as the content. We believe the creation of a safe and supportive environment is as important as presenting helpful ideas. If you are in one of our classes, I invite you to judge the group against this standard and to contact me if you believe it falls short. No Medical Recommendations This book contains no recommendations for medications or for specific medical treatments. Why not? For two reasons. First, successful treatment of CFIDS and fibromyalgia tend to be very individualized, depending on factors such as a person's symptom pattern and his or her values. Second, new treatments appear all the time and so specific recommendations can become outdated quickly. I believe that self-management is complementary to medical approaches and recommend that you pursue medical treatments, if you believe them to be useful, as well as exploring self-management techniques. Key Points
1. JoWynn Johns: "Support for Changing Our Lifestyle" in CFIDS Chronicle, Jul/Aug 1999. Sources
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