Meeting the Challenges of Long-Term Illness

Introduction

By Bruce Campbell

When you first became ill with CFIDS or fibromyalgia, it may have seemed like you had come down with a lingering short-term illness. But at some point you realized that you had entered a new realm: the world of chronic illness, a confusing labyrinth in which all the rules of life seem new and there is no obvious way out. Instead of resuming your previous life after a brief interruption, as you would with a short-term illness, you were faced with the prospect of adjusting to a different, more limited life. Unlike short-term illnesses, which interfere with our lives briefly, chronic illness confronts us with the necessity to adjust to long-term symptoms and limitations.

Long-Term Illness

This series will describe five challenges of chronic illness and show you how to master them. These challenges are implicit in the differences between chronic illness and acute illness. The key difference is that illnesses like CFIDS and fibromyalgia are comprehensive. They touch every aspect of life: your ability to work, your relationships, your emotions, your dreams for the future, even your sense of who you are. And the relation is two-way: not only does illness affect many parts of life but also it is in turn affected by those other parts. (See diagram).

Consider the relationship between illness and activity. Illness reduces your activity level, imposing restrictions and forcing you to live a more limited life than before. But the relationship 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. Doing too much repeatedly can resulted in even greater limits.

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 stressful. In addition, illness often creates financial pressures, complicates relationships and brings 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 the relationship runs the other direction as well. The way you respond to stress can make symptoms worse or help reduce them. For example, if you tense up in response to stress, muscle tension will increase your pain. If, however, you learn to relax in response to stress, you can reduce your symptoms.

In summary, CFIDS and fibromyalgia have comprehensive effects, touching many parts of your life. They are much more than simple medical problems.

Your Role

As long-term illnesses, CFIDS and fibromyalgia are usually not resolved but have to be managed. Their long-term nature implies you have a different role as a patient than you have with acute illnesses. With short-term illnesses, you often can rely on a doctor to provide a solution. But CFIDS and fibromyalgia are different. There is no medical cure for either one. And doctors have limited powers, because there are no cures for chronic conditions 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.

The good news is that there is much that patients can do to improve their situations. In the words of CFIDS/FM physician Charles Lapp: “There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFIDS or FM.” You will learn from this series coping strategies we teach in our self-management course, which takes an approach similar to that used in other self-help programs for chronic illness. These programs, which include courses for people with heart disease, cancer, arthritis and chronic pain, have been proven to reduce symptoms and increase patients’ level of functioning. They teach people how to improve their skills in managing chronic conditions, and are all based on the idea that how we live with chronic illness can change its effects and may even change the course of the disease. Even though there is no yet a cure for either CFIDS or fibromyalgia, there are many things patients can do to improve their quality of life.

Challenges of Chronic Illness

This series will describe the five key challenges of chronic illness and how you can meet them. The challenges are:

1) Living within Limits

Serious illness imposes limits, forcing us to lead a more restricted life. As noted above, many patients respond by engaging in repeated cycles of push and crash: fighting against their limits, then collapsing in order to recover. The next two articles describe a way out of this impasse. Instead of fighting against or trying to ignore limits, the two-part strategy of finding and then honoring limits offers a way to gain some control.

2) Controlling Stress 

Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS and/or fibromyalgia. Being chronically ill adds new stressors to those you were already confronting. Complicating your challenge, CFIDS and fibromyalgia are very stress-sensitive illnesses. They seem to reset our “stress thermostat” so that the effects of a given level of stress are greater than they would be for a healthy person. Two articles in the series offer practical strategies for controlling stress through a combination of stress reduction and stress avoidance. We may not choose what stressors enter our lives, but we can choose how we respond to them.

3) 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. Two articles describe how self-help can play a role in managing the emotional aspects of chronic disease.

4) 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 as well. At the same time, we may feel isolated both physically and psychologically. Two articles discuss strategies for responding positively to the need for support.

5) Moving Beyond Loss 

The final challenge of chronic illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss. Chronic illness brings with it many serious losses, so much so that it can be called the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: bringing meaning to life when so much has been taken away. We will look at this topic from two perspectives. One article discusses how to work through loss. Another describes how to move beyond loss to build a new life.

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