By Bruce Campbell
Your success in managing a long-term condition depends in part on your coping skills and attitude. You may not be able to change the fact that you have CFIDS or fibromyalgia, but you can learn new ways to deal with your illness. In the words of Dr. Charles Lapp, we cannot always choose what life gives us, but we can choose how to respond.
Self-Help Programs for Chronic Illness
Several educational programs for people with chronic illness illustrate the importance of skills and attitude. One such program is the Arthritis Self-Help course, which was developed at Stanford University in the late 1970’s and has now been taken by over 300,000 people. Patients taking the class have significantly reduced their pain and depression, and increased their activity level. Research has shown that the patients who improve the most through this six-session class are those who believe in their ability to exercise some control over their illness. These people do not deny they are sick or hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better.
Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced comparable results. Patients who took a six-session course on coping with skin cancer showed an increase in life expectancy in comparison to other skin cancer patients. And patients who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain.
All these programs are based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. The three courses showed that using good coping skills can make a significant difference to quality of life.
I believe the principles of these programs can be helpful to learning how to live well with CFIDS or fibromyalgia. As with other life problems, learning to manage chronic illness involves making adjustments to daily habits and routines. This is a gradual process, often involving setbacks. Early attempts to try a new skill may be clumsy, with few good results, but practice brings mastery over time.
Acceptance and a Fighting Spirit
The attitude that seems to help people learn to live well with long-term illness can be characterized as being at the same time both realistic and optimistic. I call it acceptance with a fighting spirit. Patients with this attitude combine two apparently contradictory ideas. On the one hand, they accept their illness as a long-term condition. Instead of living as if they were well or searching for a miracle cure to restore them to health, they acknowledge that their lives have changed, possibly forever. At the same time, these people also have a fierce determination to improve, and the conviction that they can find ways to get better through their own efforts.
Dean Anderson, a recovered CFIDS patient whose recovery story we have posted, provides an example. After failing to improve by determination and hard work, he came to a certain kind of acceptance. He describes this acceptance as not resignation, but rather “an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.” He goes on to say that “the ‘effort’ required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving.” The discipline required is the discipline “to recognize and adhere to one’s known limitations and to follow a strict regimen without periodically lapsing.”
A key skill for self-management is problem solving. Because both CFIDS and fibromyalgia are ever changing, we are continually faced with the necessity to adapt. Taking a problem-solving approach can help you respond to your always-changing situation. I suggest you consider using the following three-step process.
1) Select a Problem
The starting point is to identify a problem that is important to you and that you feel ready or compelled to work on now. It will usually be something that interferes with your life, makes your life much more difficult or prevents you from doing something important. Here are two examples.
For years before becoming ill, you hosted your family’s holiday celebration. You decorated your house lavishly and cooked all the dishes, including several long-time family favorites. You feel pressured to entertain your family in the same way now, but doing so triggers a severe flare that lasts two weeks. You would like to find a way to celebrate the holidays that doesn’t trigger a relapse.
Doing your weekly laundry and housecleaning tires you out so much that you are exhausted for two days after. You hate a messy house and not having clean clothes, but you can’t see how to do your chores as you used to, given your limited energy.
In each of these hypothetical situations, you felt caught between two unattractive solutions: doing things as before but with a high level of symptoms or giving up something that you value. Having such a conflict may provide the motivation to see your situation in new ways and to look for alternatives.
2) Explore Causes and Possible Remedies
The second step is to think about what factors may lie behind the problem, and then to brainstorm how you could handle the situation differently in the future. Often, problems have multiple causes, so a combination of solutions may be appropriate. The idea at this stage is to consider as many possibilities as you can imagine. That way you are likely to view your situation in fresh ways. Here’s how you might implement the second step in our examples.
Family customs and expectations are in conflict with your current limits. Now you need help or perhaps will have to give your former role to others. Practical solutions to your holiday dilemma include: hosting the celebration but having others bring the food; hosting but cooking only one dish; rotating the celebration among other relatives; and going out for a family meal.
Each solution requires that you and your family examine and modify expectations for how the work of holiday celebrations is handled. As such, the situation is one case of some general issues. First, a solution to your holiday dilemma will probably involve family conversations, in which you will need to be assertive about your limits and your need for help. Also, the holiday situation is symbolic of the fact that you have changed and those around you need to adjust.
Just as you have to take on a new identity, other family members have to adapt as well. Both your role in the family and theirs change. You may resent losing some former responsibilities and other family members may resent having new ones. There are psychological adjustments as well. Giving up your role as host for the holidays is just one part of a broader experience of loss of roles that provided identity and meaning.
You are not able to do your household chores in the way you are used to doing them. One possible solution is to spread the chores out over several days, rather than trying to do all the laundry and housecleaning in one day. Or you might still do them both in one day, but take rest breaks periodically. Both of these solutions are examples of pacing.
Another possible solution is to clean less frequently. (One person wrote she now views dust as something that “protects my furniture.”) As with some of the solutions for holiday celebrations, this involves changing your ideas of what is appropriate. Two other solutions involve getting help from others. You might ask children to clean their own rooms or do their own laundry. Or you could hire a cleaning service to come in from time to time.
A final possibility is to move to a smaller home. If you saw housecleaning as one example of how household responsibilities in general had become too great, you might consider simplifying your life by moving to a home with fewer responsibilities.
3) Experiment with Solutions
The third step is to try various solutions and evaluate the results. Probably some potential remedies won’t work, but perhaps others will prove helpful. Your final solution may be a combination of several approaches. I suggest you look at your efforts as a series of experiments. With that view, you can more easily accept disappointments and move on to another attempt.
Here’s one way the third step could turn out in our examples.
Holiday Celebration: You talk to your husband and children about a new division of labor for the holidays. You agree to try having a less ambitious set of events this year. Your extended family, however, is unsympathetic. They have never believed you were truly ill. You and your husband accept hosting the family celebration for at least one more year. He and your children agree to share cooking responsibilities. You conclude that it may take several years to settle into a new holiday routine that all family members will accept. You also decide that some members of your extended family may never accept your limits. You join a support group and find it helpful to talk to fellow patients about accepting the loss of your role as family matriarch.
Household Chores: After talking with friends you know from a support group, you decide to try a combination of strategies. You ask your children to clean their own rooms and wash their own laundry. Also, you decide you will reduce the amount of housecleaning you do, cleaning less thoroughly and having your house cleaned twice a year by professionals. At the suggestion of another patient, you decide to keep a journal to explore your thoughts and feelings about the loss of your ability to “keep up.”
There are a number of principles to keep in mind while using problem solving.
Explore a variety of potential solutions. There are usually several ways a problem can be solved. Looking at your situation from a number of perspectives can help you recognize different approaches. Also, some potential solutions will probably not work, so it’s helpful to have a number of options to consider.
Ask what resources are available. In many cases, you will be able to solve your problems yourself by brainstorming possible solutions and trying one or more of them. But you may sometimes want to get help, either in trying to understand your problem or in solving it. As we saw in the first example, family members might help with holiday celebrations. Family members might also help with household chores; hiring help might also work.
Practice assertiveness. Your illness will require changes in your role and in those of other members of your family. Whether it is who does the grocery shopping or who hosts the family holiday celebration, responsibilities need to be renegotiated. Also, as mentioned above, you have to adjust to the loss of roles while others are forced to take on new responsibilities.
Make mental and emotional adjustments. Having a serious illness requires that you adopt new expectations for yourself based on having new, more restrictive limits. Your expectations for yourself have to be adjusted. Your adjustments are part of a process of grief, which is adaptation to loss. The person you were before becoming ill has been replaced with a new, more limited person.
Because of the nature of CFIDS and fibromyalgia, it helps to have a flexible approach to managing your illness. There is no standard treatment for either illness, no commonly prescribed remedy. Also, treatments that help for a time may later become ineffective. Finally, each person’s life situation is unique and ever changing. For all these reasons, managing CFIDS and fibromyalgia is individualized and constantly evolving in response to circumstances. Problem solving offers a flexible and realistic approach to managing chronic illness.
- Bruce Campbell: Self-Management (Four Parts/Steps)
- Skills and Attitude
- Developing a Partnership with Your Doctor
- CFIDS & Fibromyalgia Basics