Step 4: Develop a New Self-Understanding

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By Bruce Campbell

Learning to live successfully with long-term illness requires many adaptations. Some are practical changes in the way you lead your everyday life, as explained in the next step. But others are mental adjustments, changes in the way you see yourself and your place in the world. The key in this area is acceptance, the process by which you come to acknowledge that life has changed and that you need to live your life differently than you did before.

Acceptance is not the same as resignation. Rather, it is an acknowledgment that life has changed and that you need to adapt. This acknowledgment is based on your developing a new relationship to your body. In the words of one person in our program, "Getting well requires a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down." This change involves adopting different goals and different expectations of yourself. Step 4, the process of mourning the loss of your old life and building a different life for yourself, usually takes several years.
 

Creating a New Life

The losses brought by long-term illness create a challenge: who are you, if you can't be the person you used to be? In the article titled What Recovery Means to Me, CFS patient JoWynn Johns describes how she recognized and responded to the challenge: "Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known 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."

From this perspective, long-term illness forces us to redefine ourselves. While illness brings pain, suffering and loss, it also provides an opportunity to reevaluate life and recast it in a new way. Many students in our program have said that even though they would not have chosen their illness, they have learned valuable lessons from it. They believe that it is possible to live a rewarding life with long-term illness, even though it is a different kind of life than before and a different life than the one they had planned.

Reframing

People in our groups report using several strategies to recast their lives. One is reframing or looking at their lives in a new way. Some focus on the gains they have experienced because of their illness. Some say that they prefer the person they are today to the one before their illness. In the words of one student, "Even though I grieve the loss of self, the new normal me is a kinder, gentler, and more caring person." Others say they have a better life today than before. One wrote, "In many respects, my life now is better than it was before I got sick. I know what my priorities are; my social calendar is not packed with activities - just those that are important to me; and I'm not as stressed as I was.... I'm almost thankful for having fibromyalgia (and the other related things) because the positives far outweigh the negatives!"

Some have found mental healing through gratitude. Fibromyalgia patient Joan Buchman describes in The Healing Power of Gratitude how keeping a daily gratitude journal taught her "to treasure what I have right now.... Because of FMS, I have had the opportunity to find out what is really important for me to live a fulfilling and meaningful life." She stresses that 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."
 

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 and pain, offsetting them with pleasure.

There are many ways to nurture yourself, many forms of pleasure. It may be 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.
 

New Interests and New Meaning

A powerful antidote to loss is to develop new interests and, from that foundation, a sense of purpose and meaning. Some patients 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 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. In the words of one student in our program:

I am not the person I was, and I probably won't have the same 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.

 

If you are like most people with CFS and fibromyalgia, you probably will not restore your old life or live the life you had planned, but you can create a different kind of life for yourself. I hope you will be able to echo the words of one person in our program, who said to fellow patients, "You can have a good life with CFS or FM, but it will be a different than life than you had before."