Recasting Family Relationships

By Bruce Campbell

(From the series Recasting Relationships and Building Support.)

Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia (FM) 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 parenting responsibilities
Financial strains
Caregiving responsibilities (for person with CFS or FM)
Strained relationships
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

This article focuses on four areas of adaptation: household tasks, family finances, socializing, and psychological adjustments. Others areas are discussed in later articles in this series.

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 patient's illness are often required, the patient 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 the person who is ill 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 patients 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 slightly reduced pension.

For other families, however, illness creates moderate to severe financial strain. For some, family income is cut drastically. If the patient 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 who take our introductory self-help course report receiving disability.)

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 strict budgeting and a reduction in 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, the type or the form of socializing.

For example, a family may rent movies to view at home, rather than going to a movie theater. In sum, the patient's illness may reduce the time he or she 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. 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.

In our experience, patients and their families have used three strategies to build a new life.

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 to focus on the positive.

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.

Finding positive models

Patients 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.