Family Adjustments to ME/CFS & FM
By Bruce Campbell
Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia bring dramatic and far reaching changes, not only to the person who is ill but also to those around her.
For all whose lives are touched by the conditions, predictability is replaced with uncertainty, stress is increased, emotions are intensified, and many practical aspects of daily life are altered.
- Extra household tasks
- Financial strain
- Caregiving & childcare responsibilities
- Worry about the future
- Uncertainty about how to help
- 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. For other family adjustments, see the article Coping with the Impacts of ME/CFS and FM.
ME/CFS and fibromyalgia usually lead to a redistribution of household tasks such as cooking, cleaning, shopping, laundry, and bill paying. For those things the person with ME/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 a healthy family member 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 children live 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.
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 adopt new standards for themselves. One patient told us, with a smile, that she now views dust as "something that protects my furniture."
And some people simplify by downsizing their home. For example, several people in our program have moved from a house to a condominium.
While accommodations to the patient's illness are often required, the patient may be able to increase to some degree the amount of work she can do. For example, the person who is ill may accomplish more with lower symptoms by sitting rather than standing while preparing food or having several short work periods with breaks.
Spreading housework over a week can avoid the push and crash syndrome. Finally, most patients have better and worse times of day and can get more done by working during their good hours of the day.
The financial effects of ME/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 others, 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 person who is ill is unable to work, family income may be reduced by half or more. A successful application for disability payments can reduce the deficit. (About 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 has changed jobs to get work at higher pay or with better health insurance benefits.
Some also 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.
Because people with ME/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 time with others.
People with ME/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.
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 other people and lead them 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.
Just as loss is a significant challenge for people with ME/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, the family experiences the loss of a dream and is challenged to adjust to a different type of life than it had planned. Family members lose some of the companionship they used to enjoy and, instead, may have to take on new responsibilities.
The key to psychological adjustment is acceptance, a complex attitude that includes the recognition that life has changed and letting go of a past life and of the future as it was envisioned. 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 four 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 development of new interests and, from that, a new sense of purpose and meaning. One couple, in which the wife is housebound, took up the study of music using a course on DVD. The project is a shared activity that replaces those lost to illness.
3. Find Positive Models
People often report that their adjustment to ME/CFS and FM 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.
4. Develop Separate Interests
Healthy spouses usually have new responsibilities around the house, often including more childcare. As a way to recharge their batteries and avoid caregiver burnout, they need time alone or time with friends.
Also, people with ME/CFS and FM can benefit from time alone and from developing new interests and new sources of support, such as others with ME/CFS and FM and people who share similar interests.
Allowing the healthy spouse to develop his own interests and friendships can feel threatening, but there are benefits to the person who is ill.
In the words of one person with the two conditions, “At first, it can feel a little like the well partner is abandoning the sick partner, or at least moving away. But with time, the person with CFS and FM can see the positive side to their partner developing their own interests: the partner is happier and better able to be a caretaker, and the person with CFS and FM gets time alone to rest!"