Building a New Life: Illness as a Spiritual Journey

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By Bruce Campbell

While a few people with ME/CFS and fibromyalgia recover, most face the prospect of living with illness on a long-term basis. Coming to an acceptance of loss often takes years.

Patients often report that they experienced a gradual recognition that the old self had been replaced with a different and more limited self. Long-term illness creates many challenges. One of the most demanding is: who are you if you can't be the person you used to be or the person you had hoped to become?

Illness as a Spiritual Journey

For some patients, long-term illness triggers a spiritual journey. While illness brings pain, suffering and loss, 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 their illness, they have learned valuable lessons from it. They believe, and I agree, 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 different than planned.

In an essay titled What Recovery Means to Me, ME/CFS patient JoWynn Johns describes how she recognized and responded to this challenge of who she could be if her old self was gone.

She writes, "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."

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 any more.

She described her life before illness as including hiking, rock climbing, caving, cross-country skiing, backpacking, orienteering, abseiling and snow camping. The friend responded by saying, "Yes, that was another life."

The patient said the 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."

Reframing

People in our program have echoed JoWynn's sentiments, finding their own ways to give positive meaning to their new lives. One approach to the transition is to focus on gains that have occurred because of being ill.

One student in our program wrote, "one thing that has helped is to appreciate the positives in my life. I am fortunate to have a loving and supportive husband, a wonderful son and lovely daughter-in-law, and other friends and family who accept me as I am and value our relationship."

Others say they prefer the person they are today to the one before their illness.

Even though I grieve the loss of self, the new normal me is a kinder, gentler, and more caring person.

I actually like the new me better than the old me. I'm much more pleasant to be around and I'm generally more content with life.

Others say they have a better life today than before:

I am glad for some of my losses. As I progress through this autumn of my life I am happy to shed many of my old fears, prejudices, and resentments. I replace them with confidence, tolerance, and love.

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 out weigh the negatives!

Gratitude

As implied in some of the quotes above, some people with ME/CFS or FM find it helpful to look at their illness in a way that draws their attention away from loss toward what they have gained through being ill and what they can do in the future. They may even come to see their illness as a gift.

Reflecting on the benefits of keeping a gratitude journal, Joan Buchman writes 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."

Adjust Goals to Your Abilities

Patti Schmidt described how she reoriented her life in her article Coming to Terms with a Life I Didn't Plan. 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.

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.

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. Here's how one person expressed the pleasures opened to her by solitude:

Even though I have always been a lover of the arts, in solitude I've developed a more profound appreciation of them. 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.

Develop New Interests and New Meaning

A powerful antidote to loss is to develop new interests and, from that, a sense of purpose and new 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 ME/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.

In Conclusion

Chronic illness has profound effects, changing every part of our lives: how much we can do, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are.

If you are like most people with ME/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.

You may be able to echo the words of one person in our program, who says to fellow patients, "You can have a good life with ME/CFS or FM, but it will be different than life was before."