2: Family Adjustments

Chronic Fatigue Syndrome and fibromyalgia bring dramatic and far reaching changes, not only to the person who is ill but also to those around her. Predictability is replaced with uncertainty, stress is increased, emotions are intensified, and many practical aspects of daily life are altered. And, as mentioned in chapter 1, much of the burden may fall on you as a spouse, other family member or friend.

This chapter focuses on six areas of adaptation.

1) Household Tasks

CFS and fibromyalgia usually lead to a redistribution of household tasks such as shopping, cooking, cleaning, laundry, bill paying and child care. 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 and 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.

2) 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. (A few people who continued working while their symptoms worsened have told us that they wished they had evaluated their financial situation earlier and retired sooner.)

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 to 40% of the people who take our introductory self-help course report receiving disability.)

Families in our program have used several additional strategies in response to financial stress. In some cases, a healthy family member changes jobs to get work at higher pay or with better benefits. Some families report that they established financial discipline by strict budgeting and a reduction in spending. Others have moved to smaller, less costly homes, a strategy which can reduce both expenses and household tasks.

3) Social Adaptations

Because people with CFS and fibromyalgia have significantly less energy than before, 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.

People with CFS and FM sometimes substitute phone or email contact for meeting in person. Sensitivity to light and noise may lead to changes in where and how people socialize.

For example, a family may rent movies to view at home, rather than going to a movie theater or visit restaurants at times when they are relatively quiet. Describing how he and his wife adjusted to her limitations, one husband in our program said that they had replaced hiking and camping with dinner and a movie.

In sum, the patient's illness may reduce the time he or she can spend with family, lead to changes in setting, and lead families to focus on less physically and mentally demanding activities.

4) Adjusting 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.

Loss is a significant challenge both for people with CFS and fibromyalgia, and 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, loss of some of the companionship they used to enjoy, and loss of hopes and dreams for the future. They, too, are challenged to adjust to a different type of life than they had planned, while often having to take on new responsibilities.

Coming to terms with loss and adapting to a new life usually takes several years or more. 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 with CFS and FM and their families often use a combination of four strategies to build a new life:

Adjusting 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.

Developing New Shared 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
People with CFS/FM often report that their adjustment to long-term illness was accelerated once they found other people 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.

Develop Separate Interests
Well spouses usually have new responsibilities around the house, often including more child care. As a way to recharge their batteries, they need time alone or time with friends. Also, patients can benefit if they develop new interests appropriate to their limits and also new sources of support, which may be fellow patients or people who share similar interests.

5) Sex & CFS/FM

When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple's sex life, but, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our program to describe the effects of their illness on their sexuality, all those who responded said that illness had reduced their sexual activity. Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications. Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways.

The most common adaptations are described in the article Illness & Sex: Six Strategies for Improving Intimacy.

In summary, CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness and caring.

6) Counseling

Because serious illness puts relationships under strain, counseling can be helpful. Many people in our program report using either individual psychotherapy, couples therapy or both as a way to sort out issues and to work through strains. If that idea appeals to you, consider looking for a counselor who specializes in helping people affected by long-term illness. Support groups can be a good source of referrals.

1: Roadmap for CFS and Fibromyalgia

3: How To Help Your Loved One & Yourself