Living Well with Long-Term Illness: The Role of Self-Management
By Bruce Campbell
When you first developed CFIDS or fibromyalgia, you may have thought you had a lingering short-term illness. But at some point you realized rather than resuming your previous life after a brief interruption, you were faced with the prospect of adjusting to a different and more limited life.
As long-term illnesses, CFIDS and fibromyalgia require that you adopt a different role as a patient, one we call being a self-manager. With short-term illnesses, you often can rely on a doctor to provide a solution. But CFIDS and fibromyalgia are different. Doctors have limited powers, because there are no medical cures for either illness and medications often have limited effectiveness. With long-term conditions, more responsibility falls on the shoulders of patients, as day-to-day managers of their illness. You know your situation better than anyone else, because you live with it on a day to day basis. You may seek help from experts, such as doctors, but, in the end, you are responsible. Your decisions and lifestyle will go a long way to determining your quality of life with long-term illness.
Acceptance and Hope
As a self-manager of a long-term illness, your success will depend on the attitude you have and the skills you develop. The patients we have known who have done well have all had a realistic, yet positive attitude that combined two apparently contradictory ideas: acceptance and hope. Acceptance means that they acknowledged that they had a long-term condition that imposed limits and required that they adapt. They did not try to ignore their illness, nor did they expect it to disappear. They recognized that they had to adjust to ongoing symptoms and limitations. But neither were they resigned. They had a determination to improve and a confidence that they could find ways to feel better, even if they were not able to restore their old life. (For some examples, see Dean Anderson’s account of his experience with CFIDS and other articles in our Success Stories series.)
We share their view, believing that it is realistic to think that CFIDS and fibromyalgia patients can find things to help them feel better. Medications and self-help strategies may not cure CFIDS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering. We call this approach realistic hope. Even if you aren’t able to restore your old life or to live the life you had expected, you can adapt to the limits imposed by your illness and find meaning by living the best life possible under the circumstances.
Dr. Charles Lapp made the same point when he wrote in the foreword to our course textbook that the patients he has known who have done well “all share a positive attitude and willingness to adapt. They take control of their own lives.”
Developing New Skills
As a manager of a long-term condition, you also face the challenge of developing new skills and habits that will promote a better quality of life.
One skill is learning about your illness: understanding your symptoms, the treatment options available to you, and your sources of support. Sources of information about your illness include your doctor, libraries and bookstores, the Internet, patient organizations such as the CFIDS Association of America and the Arthritis Foundation. Perhaps your most valuable source of information is you. You live with your condition on a day-to-day basis and know it intimately. Through self-observation and simple record keeping you can learn a lot about your body’s needs, what helps you and what hurts you.
Another skill is seeking help from professionals. Since the relationships you develop with doctors and other health care providers are crucial, it is important to find people you trust and feel comfortable with, and for you to take an active role in your care.
A third aspect of self-management is experimentation. Because everyone is different and no single medication has been found to be widely helpful, patients must experiment to find what works for them. What helps one person may be ineffective for another; a treatment that is effective for a while may become ineffective. We call this process of experimentation being your own CFIDS or fibromyalgia scientist. You are both a researcher and your own research subject, as you try various approaches to find what works for you. We recommend that you change just one thing at a time and that you keep written records of your experiments. Usually only a few minutes a day are needed. For more on logging, including samples logs, see Chapter 7 in our textbook.
A final skill useful for self-managers is problem solving. Because your illness and other parts of your life are constantly changing, you are faced with the necessity to adapt. Taking a problem-solving approach can enable you respond to respond effectively to your always-changing situation. We suggest you use a three-step process that is described in detail in Chapter 2 in our textbook. The keys are to consider a variety of possible strategies and to recognize that a solution may require a combination of several approaches.
Five Challenges of Long-Term Illness
Self-management is appropriate for long-term illness for a second reason. Not only does long-term illness bring symptoms that persist; it has comprehensive effects, changing how much you can do, your moods, your relationships, your finances, your hopes and dreams for the future and your very sense of who you are. Living with long-term illness means much more than managing symptoms. Controlling symptoms is just one of many challenges you face as a CFIDS or fibromyalgia patient. Here’s how to apply self-management to five of the biggest challenges of long-term illness.
Managing Symptoms: CFIDS and fibromyalgia usually have multiple symptoms and often each symptom has more than one cause. An experimental approach utilizing a variety of strategies is usually the most effective response. Many patients address symptoms such as pain and poor sleep by using medications, both over the counter and prescription. Experimentation is usually required to find medications that are effective and to discover appropriate dosages.
Making changes in your daily habits and routines, which we call lifestyle adjustments, can also be helpful. The most effective for most people is pacing. Many patients experience repeated cycles of push and crash: fighting against the limits imposed by illness, then collapsing in order to recover. Pacing offers a way to bring stability by adapting your activity level to your limits. (For more, see the chapters on Treatment Options for Fatigue, Pain and Sleep and Pacing in our course textbook or the series of articles titled “Treating CFIDS and Fibromyalgia.”)
Controlling Stress: Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS or fibromyalgia. Being chronically ill adds new stressors to those you were already confronting, things like the discomfort of symptoms, isolation, financial pressure, strains on relationships and uncertainty about the future. Complicating your challenge, CFIDS and fibromyalgia are very stress-sensitive illnesses. They seem reset our “stress thermostat” so that the effects of a given level of stress are greater than they would be for a healthy person.
Learning ways to control stress have big effects on both symptoms and quality of life. People in our classes often report that they use several forms of stress reduction, such as deep breathing, meditation, relaxation tapes and massage, in combination with stress avoidance strategies such as having a regular routine and avoiding stressful situations. (For more, see the chapter on Stress Management in our course textbook or the article “Key 7: Manage Stress” in the series “Ten Keys to Successful Coping.”)
Getting Support: Serious illnesses like CFIDS and fibromyalgia create great strains in families and test other relationships as well. The unpredictability of symptoms and of emotions make daily life difficult for everyone. Family members and friends may take on new, additional responsibilities while suffering losses themselves. At the same time, patients often feel isolated both physically and psychologically.
Given limited energy, patients often have to set priorities for their relationships. We call this relationship triage: making explicit decisions about whom to include in your support network, concentrating on the more valuable or necessary relationships and letting others go. Creating relationships with fellow patients can be a powerful antidote to the isolation of long-term illness and the frustration of not feeling understood. (For more, see the chapter on “Improving Support” in our textbook or the article “Key 8: Seek Support and Understanding.”)
Managing Emotions: Strong emotions like fear, anger, grief and depression are common reactions to having chronic illness. Such emotions are a normal and understandable response to being in a situation in which life is disrupted and routine is replaced with uncertainty. Unfortunately, CFIDS and fibromyalgia seem to make emotional reactions even stronger than before and harder to control.
Self-help strategies, sometimes in combination with medications, can help manage the emotional aspects of chronic disease. For example, the chapter in our textbook on emotions lists twelve actions to take in response to depression and eight strategies for anxiety. (For more, see the chapter on “Managing Feelings” in our textbook or the article “Key 9: Honor Your Emotions.”)
Adjusting to Loss: Chronic illness brings with it 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 great losses to most patients. Loss presents you with a double challenge: to grieve the absence of the person you used to be and to create a new life.
While a few patients recover and return to their former lives, most end up making an accommodation to illness like that described by CFS patient JoWynn Johns: “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.” (For more, see JoWynn’s article “What Recovery Means to Me,” or the chapter titled Beyond Loss in our textbook.)
Chronic illnesses like CFIDS and fibromyalgia require long-term adjustments and have comprehensive effects on patients’ lives. An effective response is self-management, which means taking an active role in managing your condition. By learning new attitudes and skills, you can respond effectively to the challenges of illnesses that don’t go away