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Creating a New Life

The losses brought by long-term illness create a challenge: who are you if you can’t be your old self or live the life you had planned?

Strategies for Building a New Life

Here are five strategies to consider as you build your new life.

1. Develop New Sources of Meaning: A powerful antidote to loss is to develop new interests and, from that, a new sense of purpose and meaning. Some people with CFS and FM have taken the opportunity to return to art, crafts or other hobbies that had languished when they were busy with career and family.
Others see their illness as a challenge and find a sense of purpose in trying to understand their illness and to expand their area of control. Still others have found meaning in helping others. Whatever path they chose, these people found new ways to bring meaning to their life.
2. Adjust Your Goals to Your Abilities: Focus on those things you can do, rather than on those you can’t, and congratulate yourself on your accomplishments. This is sometimes called adjusting expectations to a “new normal” and applies to all family members, not just the person who is ill.
3. Find Positive Models: People in the self-help program report that their adjustment was improved once they found other people with CFS and FM who had made positive adjustments to life with long-term illness. 

Such people provide inspiration and practical ideas for successful adaptation. Also, comparing yourself to other people with CFS and FM is more appropriate than comparisons with healthy people.
4. Nourish Yourself: Between what you feel you have to do and the suffering imposed by illness, it is easy to let positive things slip out of your life. Anticipation and enjoyment of positive experiences counteracts suffering with pleasure and builds a positive sense of self-esteem. 

Enjoyable experiences may include the physical pleasure that comes from exercise, laughing, taking a bath, listening to or playing music or from intimacy.
Or it may be the enjoyment and satisfaction from keeping a garden, painting a picture or completing a crafts project. Or it may be the mental pleasure that comes from enjoying the beauty of nature or from reading a book or the spiritual satisfaction of meditation or prayer.

5. Use Realistic Hope: It’s a challenge to keep hope alive when faced with ongoing symptoms and limitations. The approach we recommend is called realistic hope or acceptance with a fighting spirit. It combines two apparently conflicting parts: acceptance and belief that improvement is possible.

Acceptance means acknowledging that life has changed. People with this attitude do not live as if they were well or search a miracle cure to restore them to health.

Rather, they accept that their lives are different than before, and that it is necessary for them to live differently, for now and perhaps for the long run. At the same time, they have a fierce determination to improve and a confidence that they can find ways to make their lives better.

This approach often brings tangible results. Dr. Lapp has observed that those people with CFS and FM who do well “share a positive attitude and a willingness to adapt.”

Paths to Lifting the Burden of Mental Suffering

In addition to reducing symptoms and increasing functional level, there is another kind of healing that some people with CFS and FM experience: a change in perspective.

JoWynn Johns wrote about this in an article titled What Recovery Means to Me, when she said, "Gradually, I came to accept the idea that perhaps I never could go back to my old life." She replaced that goal with the idea of restoring quality of life through building a different kind of life than she had before CFS. "I apply the word 'recovery' to myself because I have regained a satisfying life.”

Some other people with CFS and FM say they prefer the person they are today to the one before their illness. One wrote, "Even though I grieve the loss of self, the new me is a kinder, gentler and more caring person." 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.

And some find a way to reframe their life in a realistic, yet positive, way. One woman in the self-help program wrote, "I probably won't have the kind of life I thought I would. But whether or not I recover, I try to bring as much meaning as possible to my life now and to value the core qualities in myself that have not changed… I still make a difference to other people, and I can still contribute to their lives."

Finally, some people with CFS or FM find it helpful to look at their illness through the lens of gratitude. In her article The Healing Power of Gratitude, Joan Buchman says that, for her, gratitude does not mean that she always looks at the bright side or denies pain and suffering.

Rather, gratitude is "appreciating what you have and making the most from it. It's about finding out that you have more power over your life than you previously imagined." (For a summary of research on gratitude, see the article: Counting Your Blessings: How Gratitude Improves Your Health.)

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