Reframing, Part 2: Not The Life I Planned, But A Good Life Nonetheless
By Bruce Campbell
Living successfully with CFS or FM requires not only changing what we do but also how we think. In the second of two articles on reframing, we'll look at several more mental adjustments that can reduce suffering and make living with chronic illness easier and more productive.
"Self-talk" means the things we say silently to ourselves about ourselves. Sometimes, we have an inner critic and sometimes an inner cheerleader. In either case, the things we say can have big effects on our moods and outlook on life and our willingness to work to improve.
For some people, an increase in symptoms may trigger thoughts like "I'm not getting anywhere," "I'll never get better" or "It's hopeless." Negative thoughts like these can then make you feel anxious, sad and helpless. This type of thinking can actually increase your suffering, because they make you feel anxious, sad and hopeless, which in turn makes it difficult to act in constructive ways.
The thoughts and the stress they create may make your symptoms worse and trigger another round of negative thoughts. The cycle can be very demoralizing, leading to an overly pessimistic view of your situation and making it difficult to motivate yourself to do things to feel better.
In contrast, you might respond more supportively to the same circumstances, by saying things like "I've had other relapses and bounced back, so this is not likely to last" or "I've learned that the best way to respond is to relax, so I'm going to give my body what it needs by resting."
You can learn how to recognize and change habitual negative thoughts so that your self-talk is more realistic and more positive. For a step-by-step introduction, see the article "Taming Stressful Thoughts," which uses the approach in the book Mind Over Mood by Greenberger and Padesky.
Similar self-help manuals include Feeling Good by Burns and Learned Optimism by Seligman. Also, you can get professional help to change your thinking; look for a counselor who specializes in Cognitive Therapy.
Changing Expectations: Modifying the SMOs
Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like "A good wife prepares dinner for her family" or "a good mother gives her children the best birthday parties possible."
Sometimes these standards are called the SMOs: Shoulds, Musts and Oughts. For example, "I should do more," "I must provide for my family," and "People ought to treat me better." The SMOs are rigid and create stress. They make it difficult to think flexibly. Do a reality check on your SMOs. List all the things you think you or others should, must or ought to do, and then ask whether each expectation is realistic.
It may also help to change your expectations about how others view you. As one person said, "I let go of expecting people to respond to me the way I think they ‘should'. For example, I let go of expecting that people will understand my disease. So with no expectations, I [feel] less resentment, which leads to less stress in life."
A third type of mental adjustment is to change our self-image. Sometimes people with CFS and FM, seeing that they are not able to do as much as they used to do or as much as other people, think of themselves as failures because of having CFS or FM.
There are several healthy responses to these thoughts. As one person says "When I hear myself saying, ˜You're stupid!' I remind myself that I have an illness that affects my thinking." Another person reported that she used counseling to "stop being so hard on myself and accept that I was not pathetic, useless and weak, but was doing a lot to cope with my illness and actually living a pretty worthwhile life in spite of my difficulties."
Another person used to chastise herself for taking a nap, telling herself, "you are weak and lazy for having to rest." Now, when she goes to take a nap she says, "I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren."
Similarly, when feeling tired, you can say "This fatigue is not my fault; it came with CFS. So I don't need to feel guilty about not being able to do everything I used to." Or: "I didn't ask for FM, so why should I feel shame when it prevents me from doing things."
Another helpful mental adjustment is to have a positive focus, which doesn't mean denying problems or ignoring symptoms, but rather taking heart in progress and successes as signs that improvement is possible. As one person said, "I feel better affirming my strength rather than focusing on how hard it has been. I have survived with several illnesses and that means I am strong."
Some people with CFS and FM report making a shift to gratitude. One wrote, "I focus on all the positive signs that I am moving forward and all the other things I have to be grateful for." Recent research suggests that gratitude actually improves health. (See the article "Counting Your Blessings: How Gratitude Improves Your Health.")
A Different Life, But A Good Life All the Same
Many people in our program have said that, even though they would not have chosen to have CFS or FM, they have learned valuable lessons from it. They believe it is possible to live a rewarding life with long-term illness, even though it is a different kind of life than the one they had before or the one they planned. Some even say they have a better life now than before CFS or FM.
People in our program have found various ways to give positive meaning to their lives with long-term illness. One approach is to focus on gains that have occurred because of being ill. Some people in our program say they prefer the person they are today to the one before their illness.
In the words of one person, "Even though I grieve the loss of self, the new me is a kinder, gentler and more caring person." Another comments, "I actually like the new me better than the old me. I'm much more pleasant to be around and generally more content with life."
Others say that in some respects they have a better life today than before they were ill, with the ability to focus on what is important and more time for relationships. One person wrote, "In many respects, my life now is better than it was before I got sick. I know what my priorities are. I'm not as stressed as I was....I'm almost thankful for having fibromyalgia (and the other related things) because the positives far out weigh the negatives!"
Summarizing the thinking of many with CFS and FM, some people say that, while they don't have the life they had planned, they have a good life nonetheless.