Understanding Chronic Illness
By Bruce Campbell
[Second of a four-part series.]
The first article in this series gave an overview of CFIDS and fibromyalgia. This article continues the theme of gathering information as one task you face as a patient with long-term illness. Learning about CFIDS and fibromyalgia means understanding how chronic illness differs from short-term illness, and understanding your unique situation. We will discuss those two topics, as well as describing various resources available to you to understand your illness.
Understanding Chronic Illness
Long-term illnesses like CFIDS and fibromyalgia are different from both short-term illness and terminal illness. Short-term or acute illnesses are temporary problems. They present you with brief interruptions of your life. Though sometimes frightening or painful, they are usually conditions in which diagnosis and treatment are clear, and the outcome predictable. Terminal illness, in contrast, is a life-threatening medical condition expected to end life.
Perhaps when you first became ill with CFIDS or fibromyalgia you thought you had just another short-term illness, but one that kept hanging on. But at some point, you realized that you had entered a new realm. You were confronted by the fact that your illness was not a temporary interruption of your life, but a central fact around which your life revolved. Instead of resuming your previous life after a brief interruption or struggling with a terminal illness, you were faced with having to adjust to long-term, perhaps lifelong, symptoms and limitations.
Chronic illness is different in a second way as well. Not only does it 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.
Complicating your challenge, there is an interaction between illness and other parts of your life. (See diagram.) Consider, for example, the two-way relationship between illness and activity. Illness reduces activity. In fact, one of the hallmarks of serious illness is that it imposes restrictions, forcing a person to live a different and more limited life than before. But the relationship also works in the other direction as well. If you feel frustrated at the restrictions imposed by your illness, you may respond by doing more than your body can tolerate, which results in higher symptoms.
Interactions of illness and other factors
The same pattern of reciprocal effects is true for other elements as well. Take the relation of illness and stress. Illness is a tremendous source of stress. Living with symptoms on a daily basis is inherently debilitating. In addition, illness often creates financial pressures, complicates relationships and brings great uncertainty about the future. Further, CFIDS and fibromyalgia can make you more vulnerable to stress than before, because they seem to reset the body's "stress thermostat" to be more sensitive. In all these ways, CFIDS and fibromyalgia increase the experience of stress. But you can make the relationship run in the other direction. The way you respond to stress can make symptoms worse or help reduce them. For example, if you respond to stress with worry, you can intensify symptoms. If, however, you learn to relax in response to stress, you can reduce symptoms.
Understanding Your Unique Situation
Just as chronic illness is comprehensive in its effects, so too is it tremendously varied. Some people have relatively mild cases, while others may be bedridden. Most people are in between. Also, there are many different patterns of symptoms. The bottom line: each person's illness is different. To get an idea of your situation, place yourself on the CFS/Fibromyalgia Rating Scale. Most students in our course have rated themselves between 20 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Just as people with CFIDS and fibromyalgia differ in the symptom pattern and severity of their illnesses, so do they come from many different life situations as well. Some, for example, find their financial situations have changed little. Perhaps they have a mild case of CFIDS or fibromyalgia and can continue to work. Or maybe they have family members who work or they receive disability payments that replace their former income. For others, however, financial pressures can be great, even overwhelming. Some people live alone with little or no income and no financial cushion. Many are somewhere in between.
Patients situations differ also in the area of relationships. Your family may or may not understand you. In any case, your having a chronic illness changes relationships, creating new obligations and also new strains and frustrations. All family members are challenged to live differently; some may have to assume additional responsibilities. Relationships can be great sources of support and help, or sources of stress, or both.
In your search for more information about CFIDS and fibromyalgia, I suggest you consider the following four sources.
Patient organizations such as the Arthritis Foundation for fibromyalgia and the CFIDS Association of America for CFIDS are wonderful resources. They offer information about fibromyalgia and CFIDS. In addition, they can hook you up with a local support group and may help you find a doctor.
The Arthritis Foundation is a national organization with local chapters in many places in the United States. The national organization has an extensive website (www.arthritis.org), publishes many books and pamphlets, and sponsors support groups and classes in many communities. The CFIDS Association is also a national organization with a website (www.cfids.org) and a quarterly patient magazine. They maintain a list of local support groups.
Support groups can be a good source of information as well. They may point you to local doctors who treat CFIDS and fibromyalgia. Also, groups can offer models of successful coping with illness. People who are living well with your condition can both teach you practical strategies and offer inspiration. Today such support is not limited to in-person meetings. Similar experiences are available on the Internet, at online chat rooms and message boards.
But not all support groups are supportive. Some are negative in tone, reinforcing a sense of patients as passive victims of illness. They tend to be dominated by one or a few people. A good group is one in which you feel a sense of belonging, which encourages balanced participation from most or all people present (if it's a discussion group), which gives you something positive to take home, either inspiration or practical tips, and which offers models of living successfully with illness.
Like support groups, the Internet is a mixed bag. Good information on practically any topic is available over the net, but you have to be discriminating. Some organizations offer trustworthy information; others may be preying on patients' desperation for a cure. One place to start research on CFIDS and fibromyalgia is with the two patient organization mentioned above or the following sites:
Fibromyalgia Network: www.fmnetnews.com
National Fibromyalgia Association: www.fmaware.org
Oregon Fibromyalgia Foundation: www.myalgia.com
Last, you are a source of information about your illness, perhaps the most important one. You live with your condition on a day-to-day basis and know it intimately. Through self-observation you can learn a lot about your body's needs, what helps you and what hurts you. For example, you probably already know a number of things that make your symptoms worse. Relapse triggers often mentioned in our groups include factors such as: doing too much, poor sleep, travel, financial problems, stressful relationships, worries about the future, food or chemical allergies, light or sound (sensory overload), time with other people, and family or other responsibilities.
Just as you already know a lot about what makes you feel worse, you probably also have ideas of what helps you to feel better and gain some control over your illness. When we ask people at the beginning of class what they have found helpful, they often respond with answers like the following:
- Accepting my limits, pacing myself
- Taking regular rests each day
- Getting support from other patients
- Using medications to control symptoms
- Changing my diet
- Asking others for help
- Avoiding people and situations that trigger symptoms
- Turning inward, spirituality
- Laughter and other pleasurable activities
- Practicing relaxation and other stress reduction techniques
You can increase your sense of control by trying experiments and noting the results, an approach discussed in the fourth article in this series. Whether you keep formal records or have a less formal system of self-observation, discovering links between what you do and your symptoms gives you a sense of control.
We have seen some dramatic examples in class. For example, one person with a severe case of CFIDS was able to cut her rest time in half without increasing her symptoms by taking several short rests each day rather than two long ones. By making this simple change, she added several productive hours to her day. Other people have increased the amount of work they do by choosing carefully when they work. They may get twice as much done during their good time of day than at other times.
Experimentation is the key, trying something different to see whether it helps. We call it being your own scientist. You are both a researcher and your own research subject. Given the tremendous variation in symptoms and severity among CFIDS and fibromyalgia patients, developing an individualized approach to your illness based on your unique circumstances offers the best chance for improvement.