Roadmap for Chronic Illness

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By Bruce Campbell

When you became ill with CFIDS or fibromyalgia, you may have thought you had come down with a lingering short-term illness, another temporary interruption of life. 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 had been changed and there was no obvious way out. Instead of resuming your previous life after a brief interruption, you were faced with the prospect of adjusting to a different life.

This article offers you a roadmap of the country you entered by describing six prominent characteristics of chronic illness.

Chronic Illness...

1) Imposes Limits

Having CFIDS or fibromyalgia means living within limits. Depending on severity, the reduction might be anywhere from about 50% to nearly total. In any case, the bottom line is that we can't do as much as before or as much as a healthy person might. The idea of limits is sometimes expressed metaphorically, as living within an energy envelope, having an energy bank account with a very low balance, or seeing available energy as a bowl of marbles, which must be spent very carefully.

But the constraints imposed by the illness can be difficult to accept, leading to a vicious cycle of "push and crash." Intense symptoms may force us to rest, but as symptoms wane, frustration increases. Frustration can compel us to do more than our bodies can sustain, which leads to another crash.

Further, the many losses brought by illness can trigger powerful feelings. We may feel anger in response to the fact that life changed for no apparent reason. We may also feel guilty, blaming ourselves for becoming sick or being a burden on others. Loss may also cause sadness or depression.

In summary, living well with chronic illness means learning to live within limits and learning to manage powerful emotions.

2) Affects Many Parts of Your Life

CFIDS and fibromyalgia 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.

For example, illness puts limits on our activity level. If we respond by feeling frustrated, we may do more than our bodies can tolerate. The overactivity causes a higher level of symptoms and may tighten our limits.

A similar two-way interaction is true for other elements as well. Being ill is the cause of great stress, because being sick is tiring and worrisome. But stress, in turn, can make symptoms worse. Even moderate amounts of stress can greatly intensify symptoms, creating a feedback loop in which symptoms and our reaction to them intensify one another.

3) Brings Uncertainty

Chronic illness brings 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, for how long and when? We may be concerned about our finances, worrying about whether we will be able to support ourselves or whether we can qualify for or keep our disability. When we think about the future, we may worry about how far down we might slide and about becoming dependent or financially destitute. We may feel at time that we have lost control over our bodies and over our ability to plan and predict.

Worry and other emotions common to chronic illness may be intensified by CFIDS and fibromyalgia, which seem to make emotions more intense than before and harder to control. This reaction seems part of the physical basis of the illness and may be especially strong in the early stages.

4) Varies Greatly in Severity

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. Adding to the complexity, an individual's illness may vary over time. Some symptoms may disappear, only to be replaced by new ones. Some people may have a relatively stable course, while others may fluctuate between times of severe symptoms and times of remission.

So there is a great variety of functional levels among CFIDS and fibromyalgia patients. 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, with the median being between 30 and 35. (Median means there are an equal number of people above and below.)

5) Varies Depending on Your Life Situation

Just as your prognosis for improvement is affected by the severity of your CFIDS or fibromyalgia, it is affected also by your life circumstances, especially your finances and the support you have.

The financial situations of patients vary enormously. Some continue to work, have spouses who work or receive generous disability payments. They may find their financial situation to be similar to what it was before becoming ill. For others, however, financial pressures can be overwhelming. Some patients have little or no income. Qualifying for disability can be a long and stressful ordeal. Those with disability may worry about losing it. Others feel forced to work even when their bodies cry out asking for rest.

The quality of relationships may vary greatly, too. Some patients receive good support from family and friends. For others, relationships are a source of great stress. For all, however, chronic illness changes relationships, creating new strains and frustrations.

In summary, your life situation may give you a buffer against stress or may intensify your stress.

6) Will Be Affected by Your Response

Lastly, chronic illness calls for a different role for patients and doctors than is typically true for short-term illness. The doctor has limited powers, because there are no cures for chronic conditions and medications often have limited effectiveness. In chronic illness, much more responsibility falls on the shoulders of patients, the people who manage their illness on a day-to-day basis.

And there is much that patients can do to improve their situations. Our self-management program teaches coping strategies 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.