Welcome to Holland! 

By Bruce Campbell

A woman in one of our self-help groups, adapting an idea she had read, wrote that having CFS was like planning a trip to Italy and, when the plane landed, being told “Welcome to Holland!”

"Holland!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy.” But there's been a change in the flight plan. You have landed in Holland. And there you must stay. The important thing is that it's just a different place. You must buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would not otherwise have met. It's slower paced than Italy, less flashy than Italy. But after you've been there a while, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

This woman’s analogy suggests a combination of shock and adjustment that may be familiar to others with CFS or FM.

The Three Characteristics of Long-Term Illness

There are three prominent characteristics of long-term conditions like CFS and fibromyalgia. First, they bring symptoms that persist and impose limitations. When someone you know developed symptoms of Chronic Fatigue Syndrome or fibromyalgia, you may at first have thought the problem was a lingering short-term illness. But at some point you realized that your loved one –and you-- had entered a new realm: the world of chronic illness (Holland). Instead of resuming familiar patterns and routines after a brief interruption, you were faced with the prospect of adjusting to a different life. Unlike short-term illnesses, which disrupt life only for a while, long-term illness lasts.

Second, chronic illness has profound effects, changing every part of life: how much a person can do, their moods, their relationships, their finances, and even their hopes and dreams for the future. One reason chronic illness is hard to manage is because its effects are so comprehensive. Living with CFS or fibromyalgia means much more than managing symptoms.

The effects are not limited to the person who is ill. The issues often faced by family members of people with Chronic Fatigue Syndrome or fibromyalgia include the following. (Most also apply to friends as well.)

The Power of Self-Help

The third characteristic of long-term conditions are that they are affected by the responses of the person who is ill and those around her. Neither you nor your loved one may be able to change the fact that she has CFS or fibromyalgia, but you can learn new and more effective ways to deal with the illness. How a person with CFS or FM, and those around her, live with chronic illness can change its effects and may even change the course of the illness.

For example, people with CFS and fibromyalgia typically function somewhere between about 15% and 50% of normal. If the patient tries to live at a higher level than the body allows, symptoms are intensified. If, on the other hand, she adjusts her activity level to fit the limits imposed by illness, she can gain some control.

Family and friends have an important role to play in helping the patient to adapt to limitations. By accepting that the patient can do less than before, those around the patient can help her to live better. This is not a free lunch, however. Honoring the patient’s limits often means that others have to take on new responsibilities and accept that the patient doesn’t have as much energy for relationships as in the past.

Just like the patient in your life, you, too, have landed in Holland. You have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have probably lost some of companionship and, instead, may have taken on new responsibilities. But, like the person in our class, you have a choice to dwell on what you have lost or to seek out new possibilities.

Adjusting Expectations to a “New Normal”

Living with someone who has a long-term illness means making many practical adaptations. At the same time, there is a psychological adjustment: acceptance that life has changed on a long-term basis. This is sometimes called finding a new normal.

Just as loss is a significant challenge for people with CFS and fibromyalgia, so, too, is it an issue for family and friends. Those with the conditions experience loss of health and, often, loss of income, friends, valued activities, and the future they had planned for themselves.

Family and friends experience losses as well, including loss of the person they used to know. Like the patient in your life, you have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have lost some part of the companionship you once had and, instead, may have taken on new responsibilities.