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Long-term illness brings pain, suffering and loss, but it also provides an opportunity to reevaluate life and recast it in a new way. 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.

Writing in an article titled "What Recovery Means to Me," JoWynn Johns describes how she recognized and responded to the challenge to build a new life when she says, "Gradually, I came to accept the idea that perhaps I never could go back to my old life."

She let go of her goal of recovery, replacing it with the idea of restoring quality of life through building a different kind of life than she had before CFS. "By giving up the need to have what I used to have, by giving up the idea of recovery as return to a past way of living, I have created a good life."

Usually this shift occurs gradually, but sometimes a single experience brings home the finality of loss. A fibromyalgia patient in our program reported that one day she was talking to a friend about her active life before becoming ill and how she had to accept that she couldn't be as active as she used to be.

She described her life before illness as including hiking, rock climbing, caving, cross-country skiing, backpacking, orienteering and snow camping. The friend responded by saying, "Yes, that was another life." The patient said her friend's comment was "like someone switching on a light in my brain. Intellectually, I had accepted the loss and I had grieved, but I felt that something was incomplete - suddenly ‘that was another life' gave me a file in which to put the old life."

Strategies used by people in our program to build a new life include the following.
 

Focus on Gains & Improvement

People in our program have echoed JoWynn's sentiments, finding their own ways to give positive meaning to their new lives. 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.

One says, "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!"

Develop New Interests

A powerful antidote to loss is to develop new interests and, from that, a 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. Taking advantage of newly available time, they start new activities or resume projects they had put aside during their earlier, busier lives.

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. They may do it through participating in a support group or by offering help informally. Some have started groups or lobbied for better recognition and research funding for CFS and fibromyalgia. Whatever they chose, they found new ways to bring meaning to their life.

One way to bring meaning is to reframe your life in a realistic, yet positive, way. For example, a woman in our program wrote, "I am not the person I was, and 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 try to remind myself that I still make a difference to other people, and I can still contribute to their lives."

Adjust Goals to 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.

An example is Patti Schmidt's article "Coming to Terms with a Life I Didn't Plan," which describes how she reoriented her life after coming down with CFS. She writes that, after acknowledging that her illness had changed her life irrevocably, she was left with the question: Now what?

She made some changes in thinking to accept that there were some things that had been important that she would have to let go of, but she also recognized that she still had what was important to her: her family and the ability to contribute something to others. She decided to focus on those things she could do, rather than on those she couldn't, adjusting her goals to her abilities.

Practice Gratitude

Some people with CFS or FM find it helpful to look at their illness through the lens of gratitude, focusing on their blessings and seeing their illness as a gift. Reflecting on the benefits of keeping a gratitude journal, Joan Buchman wrote that during the time she kept the journal she learned "to treasure what I have right now."

Through the journal, she recognized that before becoming ill, "I was not on a track for happiness and peace. Because of FMS, I have had the opportunity to find out what is really important for me to live a fulfilling and meaningful life."

For her, gratitude does not mean that she always looks at the bright side or denies pain and suffering. Rather, for her, 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." (See her article "The Healing Power of Gratitude." Another article, "Counting Your Blessings: How Gratitude Improves Your Health," summarizes scientific research on gratitude.)

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. But we all deserve pleasure and enjoyment. If you have things to look forward to, you help yourself in an important way. The enjoyment of positive experiences reduces stress, replacing it with pleasure and building 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.
 

One person in our program wrote about how solitude had opened a new avenue to appreciation of the arts. She said, "I respond more wholeheartedly to familiar and new literature; to the pictures, wood carvings, and pottery in my room; to the prints, photographs, reproductions of paintings, and needle art I study in books and journals; to music...Experiencing these works alone, without distraction, I find they touch me more deeply, transforming my way of seeing and inspiring my imagination."

Find Positive Models

People in our program report that their adjustment was improved after they met 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.

Educate Others

Building a new life is difficult if family and friends have outdated and unrealistic expectations of your abilities. Educating them about your illness and limitations is one foundation for positive adaptation. As described in the articles in the "Family and Friends" archive on our website, all members of the family have to accept a "new normal."
 

References

See the Success Stories archive for the articles by JoWynn Johns, Patti Schmidt and Joan Buchman. See the Coping Strategies archive for the article about research on gratitude.