Adjusting to Serious Illness: Strategies for Patients and Their Families
By Bruce Campbell
ME/CFS and fibromyalgia force profound adjustments, both for patients and for those around them. Household tasks are juggled, finances are often strained, and all family members wonder what the future will bring.
What strategies will help you and your family adjust if you are struggling with the disruptions created by either or both of the two conditions?
Understanding Your Unique Situation
The foundation of an effective response is understanding your unique situation. Every family's circumstances are different. Just as each patient must individualize his or her self-management strategy, families need to develop a response to ME/CFS or FM that fits their individual circumstances.
The scope of adjustments will be dictated by the seriousness of the patient's health problems. ME/CFS and fibromyalgia vary greatly in severity.
The average person in our self-help program reports that she functions at about 25% of normal, but there are sizeable numbers who are housebound and some who are bedbound, while others are less affected and continue to work part time or full time. The severity of medical issues will set the limits on the amount of adjustment required.
The family's financial situation is also crucial. Some families can afford to let the ill person stop working or have her take an early retirement, while others are stretched financially and may be forced to make financial adjustments of various kinds. The presence or absence of children and, if present, their ages is significant.
Couples with school-age children have to juggle work and child care. Those with adult children may get help from their kids. The health of the spouse is another important factor. In some families, both spouses are ill or a normally-healthy spouse has a health emergency like a heart attack or surgery.
A final factor is the strength of the bond between the partners. Some marriages are made stronger by illness, while others become frayed and still others break. The response of the well spouse to illness may vary from strong support, on the one hand, to disbelief, abuse and abandonment on the other.
Some people in our groups, who have had multiple marriages report that they have experienced the full range of possible responses, most commonly a lack of support in an initial relationship and understanding in a later one.
Here are ten ideas for how families can adapt to ME/CFS or FM.
1) Shifting Household Tasks
In most families dealing with either or both conditions, the person who is ill cannot do all she used to, so some or even all household tasks are adjusted in some way. For those things you can't do or can't do in the same way as before, try thinking in terms of delegating, simplifying or eliminating.
Delegating means finding someone else to do a task. This often means the well spouse takes on new responsibilities, but it could mean children do more around the house or the family uses outside help (e.g. a housecleaning service).
Simplifying means doing something less often or less elaborately, for example, cleaning house less frequently.
Eliminating means stopping something entirely, for example entertaining or gardening. (Some families give up the latter if they move from a house to an apartment).
2) Making Financial Adjustments
While the financial situation of some families is not greatly affected by the presence of ME/CFS or FM, most families have to make adjustments in their financial lives. Adjustments may include budgeting and cutting down on household expenditures, changing jobs to get higher pay or better medical benefits, and even moving to a less expensive location.
3) Educating Others
It's not unusual for family members to take time, sometimes even years, to understand what's involved in ME/CFS and FM. People in our groups report using three types of strategies to educate others about their condition.
The first is sharing basic general information about the illnesses. (Examples might include the article ME/CFS & Fibromyalgia Basics, and our series Treating ME/CFS & Fibromyalgia.)
Second, some patients have found their family understood the seriousness of their illness after attending a medical appointment with them.
Third, some have shared materials written for family and friends, such as the articles on our Family and Friends page. One person in our program gave her husband and children a pamphlet on CFS and asked them to read it as their birthday present to her one year.
4) Learning Assertiveness
Often patients do more than their bodies can tolerate, either because of pressure or because of guilt about not doing their share. A way to overcome this problem is by defining limits or your Energy Envelope and then communicating limits to others.
Adjusting activity to limits may include using short activity periods, spreading activity through the week and alternating periods of activity with times for rest.
5) Adjusting Expectations to a "New Normal"
Everyone in the family has to adapt to the presence of long-term illness, making many practical adaptations and psychological adjustments as well. One person in our program said that it took her a long time "to let go of my ownership of the kitchen."
The key to psychological adjustment is acceptance, an acknowledgment that life has changed on a long-term basis. This is sometimes called "finding a new normal."
Acceptance does not mean resignation, but rather a recognition that life has changed and a commitment to live the best life possible under the circumstances. In the words of one person in our program, "We are adjusting. Life is good...different, but good."
6) Considering 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.
7) Developing 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.
8) Finding New Shared Activities
Serious illness may make it impossible for couples to spend time together in the same way as before, but they can develop new shared activities to do together. One couple told us they took up the study of music together. The husband in another couple said that once he realized his wife's new limits, they shifted from camping and hiking to dinner and a movie.
9) Helping Others Work Through Losses
People with ME/CFS and FM experience many losses. Family members experience loss as well. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contributions.
And, just as the patient has lost the future she hoped for, so do family members have to adjust their dreams for the future. Like patients, family members, too, need to grieve their losses. In the words of one person in our program, "I lost my health, but my husband lost the woman he married."
10) Doing Your Part
If you are the patient, you probably will not be able to do as much as before, but you can still contribute. One person in our program said she focused on two things she does to contribute to her marriage:
"1) Communicate: Being a good listener for my husband and explaining what's on my mind to him (I can't expect him to be a mind reader)."
"2) recognize that my illness doesn't let me off the hook for bad attitudes and irritability: I find other ways to vent so that he doesn't take an unfair burden."
Other patients have suggested being open in acknowledging that your illness creates problems and additional responsibilities for others; expressing appreciation for family members' efforts; and acknowledging that illness can make you unreliable.