21. Family Issues

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Chronic Fatigue Syndrome and fibromyalgia send shock waves through the family. Stress is increased, predictability is replaced with uncertainty, emotions are intensified and many practical aspects of life are altered. Issues that family members face include:

• Extra household tasks
• Extra childcare responsibilities
• Financial strains
• Caregiving responsibilities (for person with CFS or FM)
• Worry and uncertainty about the future
• Uncertainty about how to help the person who is ill
• Resentment and frustration
• Sadness and depression
• Increased stress
• Loss of companionship
• Sexual difficulties
• Strained communication
• Less socializing

Family adaptation focuses on the four issues described below. (Couples issues are explored in the next chapter.)

Redistributing Household Tasks

CFS and fibromyalgia usually lead to a redistribution of household tasks such as shopping, cooking, cleaning, laundry, bill paying and childcare. For those things the person with CFS or FM can't do or can't do in the same way as before, there are two main options: reassigning or simplifying.

Reassigning means finding someone else to do part or all of a task that the person who is ill used to do. Probably the most common solution is for the spouse to take over some or even many of the duties formerly done by the person who is ill. But there are other solutions as well.

If there are children living at home, they may contribute in various ways, such as by keeping their rooms clean, helping with meal preparation and doing their own laundry. If adult children live nearby, they may offer practical help as well. Another solution is to pay for help, for example by hiring a cleaning service on an occasional or regular basis.

Simplifying means continuing to do something, but in a less elaborate or complete way. For example, people may clean house less often or cook less complicated meals. Some people simplify by downsizing their home, for example, by moving from a house to a condominium.

While accommodations to the CFS and FM are often required, the person who is ill may be able to increase the amount of work she does by using pacing. For example, several short periods of meal preparation with a break in between may allow someone with CFS/FM to make dinner without intensifying symptoms. The length of work periods may be increased by sitting rather than standing.

Also, by spreading housework over a week rather than doing it all at once, someone with CFS or FM can avoid the push and crash syndrome. Finally, most people with CFS or FM have good and bad times of day. It may be possible to get more done and avoid a flare up of symptoms by working during the good hours of the day.

Making Financial Adjustments

The financial effects of CFS and FM vary greatly. Some families make no changes to their finances or only minor adjustments. This may occur if the person who is ill was not employed when she or he became ill or was at or near retirement. Some people are able to arrange an early retirement with a reduced pension.

For other families, however, illness creates moderate to severe financial strain. If the person with CFS or FM is unable to work, family income may be reduced by half or more. A successful application for disability payments can reduce the deficit. (About one third of the people in our program report receiving disability benefits.)

In some cases, a healthy family member changes jobs to get work at higher pay or with better benefits. Some families establish financial discipline by using a budget and by reducing their spending. Others move to smaller, less costly homes, a strategy which can reduce both expenses and household tasks.

Social Adaptations

Because people with CFS and fibromyalgia have significantly less energy than before they were ill, they often reduce the time they spend with others, creating a loss of companionship both for themselves and for those around them. Factors such as energy limitations and sensitivity to sensory input (noise, light and movement) may force a reduction in the length, type or form of socializing.

For example, a family may rent movies rather than going to a movie theater. In sum, CFS or FM may reduce the time a person can spend with family, lead to changes in setting, and force families to focus on less physically and mentally demanding activities.

Adjusting Expectations to a "New Normal"

Underlying the many practical adaptations described above is a psychological adjustment: acceptance that life has changed on a long-term basis. This is sometimes called finding a new normal and it involves coming to terms with loss. Family members lose some of the companionship they used to enjoy. They lose the future they envisioned for themselves and, like the person with CFS/FM, they are challenged to adjust to a different type of life than they had planned.

Coming to terms with loss and adapting to a new life usually takes several years to a decade and often involves the steps made famous by Elizabeth Kubler-Ross in her book On Death and Dying. The end point of this process is acceptance, a complex attitude that includes recognizing that life has changed, accepting the limitations imposed by illness and adjusting expectations to match new capabilities.

Acceptance does not mean resignation, but rather a commitment to live the best life possible under the circumstances, recognizing that it will be a different kind of life than before. People in our program and their families report using three strategies to build a new life:

1. Adjust Goals to Fit Abilities. Focus on those things that are still possible, rather than on those that are no longer possible. This is sometimes called adjusting expectations or reframing your experience.

2. Develop New Interests. A powerful antidote to loss is to develop new interests and, from that, a new sense of purpose and meaning. A couple, in which the wife is housebound, have taken up the study of music using a course on DVD. The project is a shared activity that replaces those lost to illness.

3. Finding Positive Models. People often report that their adjustment to CFS/FM was accelerated once they found other patients who had adapted successfully. Families can follow the same approach, seeking out other families who can provide both practical ideas and models of successful adaptation.