In his famous book, Man’s Search for Meaning, psychiatrist Viktor Frankl described how people living in the adversity of concentration camps in World War II fared better if they were able to find meaning or purpose amid their circumstances. Today, researchers have found that his observations apply to the adversity of a chronic or life-threatening illness as well. But what possible meaning or purpose can there be in the experience of CFS? People with this illness find that it directly challenges all that their lives have stood for.
In talking with former sufferers, many of whom were once so debilitated that they doubted they could ever recover, it is common to find that they look back on the illness as a time of profound learning. They report that CFS served as a teacher and an opportunity for reevaluating their values, purposes, and whole way of life.
Though it may he hard to believe at first, there is a consensus here: in retrospect, the lessons learned were of such great value that they were worth the price. Following are some of the insights offered by former patients.
One of the most common discoveries is that we can actually pay attention and listen to ourselves much more deeply than before. Some experience this as listening to inner guidance. Others describe it as listening to the body, as trusting yourself, or as accepting yourself. Consider Tina:
“Getting sick was the best thing that ever happened to me… My body just had to stop me. I wasn’t paying enough attention to my life, my stress, my job and my unhappiness to do anything about it, until I got so sick that I literally could not do anything and had to stop… I’ve learned that I always lose when I don’t listen to myself, when I don’t trust myself. I just have to do things from my heart or my intuition. Otherwise things just go wrong.
Tremendous strides in self-acceptance are very common. As Debbie states, “I feel now that whoever I am and whatever state I am in, I’m okay, I love myself… My wants and needs are valid, and I say what they are. I may not always get it right now, but I no longer wait for someone else to give me permission or encouragement to have what I want or need.”
Much of the suffering brought by CFS is as a result of having to cope with the limitations on our ability to do things. It stands to reason that to the degree that you define yourself by your actions, you will suffer more. Consider Gail’s perspective:
“The big revelation for me was that I am not what I do. I discovered that it didn’t matter to my husband whether I could do anything or not. Even though I wasn’t doing a thing for anybody, there were still people around that loved me. That was a new awakening for me…
“I felt like I was a big zero, but other people were seeing something in me that I couldn’t see. I began to think that maybe there was something left, that maybe I had something within me that I could give. If people could see something in me deeper than my everyday roles, there must be something there and I needed to look for it.”
Related to the lessons about being versus doing is a more general re-examination of values about living. Bernice offers us the following reflections:
“It’s made me more compassionate, more understanding. It’s made me slow down and escape the rat race and start looking at what’s really important in life. I think had I not gotten ill, I wouldn’t be spending as much time with my children. I’d be at work, and I wouldn’t have learned meditation.”
For Kris it was a simple message about living in the moment: “I’ve learned to pay more attention to the present, and worry less about the past and future.
Debbie reports shifts in several values: “I am now happy, and I don’t even think I knew what it was to be happy before… I’ve come to believe that what’s most important is the quality of relationships—honesty, truthfulness, communication. I say exactly what I feel and what I want. Some people think I’m selfish, but I’m just being honest.”
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And Gini reveals a deeper reverence for life: “I’ve learned to cherish life a lot more than I did before, taking a lot less for granted. I cherish my husband more too, our intimacy and our everyday life.”
After recovery, people often report a new calmness, greater feeling of inner strength, or new confidence in inner resources. Perhaps these changes come from having plumbed the depths of despair and made the journey back to balance. Linda offers her observation:
“If you survive something like Chronic Fatigue Syndrome and don’t commit suicide, you have a greater inner strength than you ever had. It was like a trial by fire. That’s what I experienced.
“For me, that inner strength came from seeing that life goes on and I didn’t need to do a whole lot to survive. Now that I have the energy to do anything I want, I don’t have to do all the mundane things that I thought I had to do.”
Some who would never have considered meditation discover how nourishing and healing it can be simply to become quiet and look within. This theme is voiced by Bernice, who states: “I’m realizing that the purpose of this disease is for me to go within, learn a lot more about myself, and make some incredible changes in order to survive emotionally. I realize that I came from a very dysfunctional background, that there is a lot of learned fear and guilt that seem to be blocking the natural healing energy within me.
“The lesson boils down to my drowning in self-doubt, self-hatred and guilt all my life. The illness has forced me to realize that those are the very things that are preventing me from getting well. The healing energy’s there—I mean, if I cut my finger, it heals. It’s there, but I was blocking it.”
Times of adversity inevitably bring people more in touch with the spiritual dimensions of life. One result can be change in the frequency or quality prayer. This is supported by Gini, who tells us, “I would say that overall my spirituality is more alive. We pray on a daily basis. I get the feeling that I can cope with whatever comes, like there is somebody there who is stronger than I am.”
It may also mean a wholesale reappraisal of one’s spiritual values and belief system. This was the case for Gail, who says: “I really had to look at my religious side and what I believed in. I found that it didn’t work for me anymore. And so I started searching for other things of a spiritual nature. I found that meditation did work for me, going inside to find answers, relaxing, quieting my mind, to find my higher self.”
Or it may be of a simpler impact, as described by Debbie: “I am healing myself by getting in touch with my true spirit.” In all of these cases, the patients agreed that the illness brought them to a greater recognition of the place of spirituality in their lives.
What can be concluded from these patients’ experiences. They serve to remind us not only that there is hope for recovery, but also that the saying “broken bones heal stronger” applies in a way to CFS as well.
Dr. Collinge is a researcher and writer in the field of behavioral medicine, living in Sebastopol, CA. He began working with Chronic Fatigue Syndrome during the Lake Tahoe epidemic in the 1980s.
His book Recovering From Chronic Fatigue Syndrome: A Guide to Self Association of America. An accompanying set of tapes, The Home Self-Empowerment Program, is available through Dr. Collinge at 1-800-745-1837.
Both the book and the tapes will also soon be available through the CFIDS Buyers Club.