CFS 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 often focuses on the four issues described below. After reading about them, you can print and fill out the family Issues worksheet, and get our recommendations for next steps by clicking on the links to the right. (Couples issues are discussed in the next section.)
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 three main options: reassigning, simplifying and eliminating.
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.
Third, you may choose to eliminate some activities.
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, though this may mean 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.
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, people with CFS or FM may have to limit their attendance at a child's school events or 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 mental adjustment: accepting 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, adjusting expectations to match new capabilities, and working to improve quality of life.
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.