Recovering from Chronic Fatigue Syndrome: Using Your Illness as a Teacher
January 1, 2003
From Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Chapter 12: "Using Your Illness as a Teacher")
By William Collinge, Ph.D.
"I feel that I have discovered and recovered a part of my self that had been lost."
People with Chronic Fatigue Syndrome (CFS) often find that the syndrome directly challenges all that their lives have stood for. Many have found that to make it through this existential crisis, they have had to find a way to fit this illness into the overall fabric of a meaningful life. In this chapter, we will explore how former patients successfully dealt with this aspect of CFS, and how in many ways their lives were deepened and enriched through this experience.
In his book Man's Search for Meaning, psychiatrist Viktor Frankl described how people living in tremendous adversity fared better if they were able to find meaning or purpose in their circumstances.(1) Frankl was talking about prisoners of Nazi concentration camps in World War II. Yet we now know that his observations also apply to the adversity of a chronic or life-threatening illness. There is a growing consensus that patients who maintain a sense of meaning or purpose have better medical outcomes than those who do not.
The invitation I would like to offer you in this final chapter is to see illness as a catalyst for personal growth and expansion. In short, you can use your illness as a teacher. If you do, then it is not just a cruel, random act of nature, and you are not simply a helpless victim. You redefine your passage through this illness as a journey of discovery, and you have resources with which you can confront the challenge and achieve mastery over it. Research in health psychology has shown us that people who take such a "challenge" perspective are hardier and recover more quickly from illness.(2)
How Can Illness Be Beneficial?
Psychologists have long been interested in what they call the secondary gains, or benefits, of illness. There are two ways in which illness can be beneficial. One is when it serves to rescue or remove us from unacceptable or unwanted circumstances. The other is when it brings us unexpected insights or discoveries which enrich our lives and advance our growth.
Usually discussions about this subject focus on the role illness serves in helping the person avoid unwanted circumstances. Consider, for example, the child who creates a stomachache on the morning that he doesn't want to go to school, and the stomachache disappears shortly after Mother gives her permission to stay home.
In this case, the illness was created by the person to manipulate a situation and achieve certain benefits. However, one of the most painful things a person with CFS can hear is the suggestion that they created the illness for some gain. Granted, there are many cases where CFS has forced people to make lifestyle changes that turned out to be very desirable, such as quitting a high stress job or leaving a destructive relationship. Yet this illness is far too complex to be something that can be created for such a purpose.
It is certainly worthwhile to examine whether the illness is bringing relief from some otherwise unacceptable circumstance. If this is the case, then you may not be pursuing your recovery program with full commitment.
Our focus here, however, is on the other kind of benefit-one which, for many patients, has been totally unexpected yet greatly appreciated. CFS has served as a teacher and an opportunity for personal growth. As you have no doubt found, this disease can force you to re-evaluate your values, purposes, and whole way of life. Various people have described this illness as a wake-up call or a two-by-four over the head. Perhaps a more sophisticated term is to call it a "pattern-interrupt." This is a term used by hypnotherapists to describe something that interrupts or changes old, unconscious patterns of living or acting, and makes room for something new and better to happen.
Below is an exercise that you can use to discover what CFS may be able to teach you.
EXERCISE: DIALOGUE WITH ILLNESS
In this exercise you will be having a dialogue not with your inner child, but with your illness. To be more precise, the dialogue is between your wise, adult self, and an inner voice that represents the illness. Set out two chairs or two cushions on the floor. Let one seat represent your wise, adult self while the other represents the illness.
In this process you will be physically moving back and forth between the two seats. You begin with a few minutes of silence to prepare your adult self to be completely focused on the process.
When you feel completely present, begin asking the questions below. Each time you ask a question, you move to the other seat to respond as the illness. It is important to actually move in order for the process to work.
When you ask the questions, do so with an objective, casual attitude. You are simply seeking objective information, much like a journalist might do. This is not a confrontation or a healing process. If you have a disdainful attitude toward the illness, its voice will not be as clear and it will not be as forthcoming with information. Remember, all you want from this is information.
In giving your voice over to the illness, it is important that you take your time to relax, close your eyes, and go inside to find an intuitive sense of what the illness might say. When you respond, try to imagine that you are the illness talking. Respond as sincerely and honestly as you can.
Begin with the following questions:
1. What are you here to teach me?
2. How well am I learning what I need to learn from you?
3. How do I make it easy for you to remain with me?
4. What will it take for you to leave?
5. Is there anything else I should know?
Spend as much time as you need on each question until you feel satisfied that you understand the answer. If you need to ask for clarification about a response, physically move back and forth between the two seats so as not to blur the two voices together. And each time an answer comes, be sure to thank the illness for speaking to you and helping you understand it.
Always end the dialogue in the adult seat, thanking the illness for being willing to share its secrets with you.
The answers are coming from your subconscious, which is intimately in touch with events in your body. Use the questions as a point of departure to pursue anything else the illness might be teaching you. This is a device you may use regularly, perhaps each day, to monitor your progress.
The balance of this chapter offers the insights of several former or current patients, in what CFS has taught them about living. Though it may sound hard to believe at first, there is a consensus here: The lessons learned are of such great value that they were well worth the price.
Your Relationship with Yourself
CFS forces you to change your relationship with yourself. One of the most common discoveries is that we can actually pay attention and listen to ourselves much more deeply than ever 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's story:
"Getting sick was the best thing that ever happened to me. It was what it took for me to really. . . make major changes. I don't think I would have done it otherwise. 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. After that, everything changed.
"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.
"There were signs all along when I was getting sick and would spend four or five days in bed. But I never trusted myself, I would always push myself. Part of me was telling me that something was wrong, that I had to stop and do something, but I didn't listen."
A similar experience is reported by Christy, who states: "I am actually grateful that I got sick, for what I have learned has been that valuable to me. It taught me to slow down and listen to myself. It also taught me that I will never work for money again, only for something I like to do. Money will come, but my job will never run my life again. I will do things that bring me joy."
A variation on this theme is offered by Debbie, who discovered that trusting herself was paramount in coping with CFS:
"What has helped the most has been knowing that what I really feel and sense is true, that I don't have to doubt myself, that what I feel is true for me I can trust. I trust my own thoughts and perceptions. I don't have to live for someone else, not to please twenty million other people, which never worked. I can live my own life for me.
"The hardest thing in coping with this illness was the self-doubt, doubting myself and what I really feel-feeling sick and having other people telling me that maybe I'm making it up.
"What l have learned is that I am me, l can trust me, and I like myself."
Ginger's work with this lesson includes listening to her body as a source of wisdom. We have discussed earlier how symptoms are actually an intelligent effort to restore balance on the part of the body:
"While the initial lesson was learning patience, what I am learning now is to trust my own instincts, my own reasoning and thoughts and insights. I am learning to trust my body's responses to the environment, to irritants, pollutants. I have learned to trust my gut reactions to things rather than the mental processes.”
In all of these cases there was a turning inward, and a receptivity toward what was being heard or felt. The relationship with the self became one of being interested in, and trusting, one's own inner experience of life more than before.
Another aspect of this transformation is the obvious shift in attitudes toward self-care. A high degree of vigilance needs to be developed which involves paying attention to your needs on a moment-to-moment basis. Maintaining your sense of balance or integrity becomes a real priority in daily living.
Mike describes his experience as follows: "I take care of myself much better than I ever used to, as far as what I eat and how much sleep I get. Even though I consider myself well, I still have not increased my office hours. I still take two-hour lunches and a day off during the week. I just figure that there are more important things in life than money-such as my family, my health, and my wife."
For Kris, developing a new attitude toward self-care has also been an important outcome. "I have learned that I can influence my health, and I do so very willingly. In the long term, I can affect positively any illness I have. Begrudgingly, I can say I am grateful this illness came now because I needed to learn these lessons. I've had chances in the past and I haven't acted on them. That's one way I've benefited."
As I discussed in Chapter 11 [of my book], one challenge with which many patients struggle is their own inner resistance to change. Even though we know what is good for us and what would promote recovery, it is still hard to follow through with changes to old habits. Kris describes what it was like for her: "I've learned to laugh at myself, at how stubborn I am. Because I REALLY AM STUBBORN. And there's a little girl inside me who really doesn't want to change. So we have a good laugh every now and then."
Tremendous strides in self-acceptance are very common for people who have been through CFS. The syndrome forces people to acknowledge and accept their vulnerability and their limitations. In the process of doing so, there very often is an overall shift toward greater self-acceptance. As Debbie states, "I feel now that whoever I am and whatever state I am in, I'm okay, I love myself."
Self-acceptance also involves acceptance of aspects of your self that were previously denied or discounted, such as your wants and needs. Debbie had previously taken an attitude of self-denial, self-sacrifice, always putting others' wants and needs before hers. This would happen not only in family life but with friends as well. Her belief now is that "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 on the mental or emotional level, 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.
Yet many are learning that as this self-image as a "doer" changes, life goes on. They discover that there are dimensions of life other than external accomplishments. They learn that they are valued by others, and can value themselves, simply for being who they are. Consider fur example 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, and that's really what brought me out of the depression. 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, 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."
We are not the roles we take on. We are not our careers. We are not our actions. We are much greater and deeper than those external identities. CFS has forced many people to rediscover who they are, and to become very clear about the fact that they are not what they do.
According to Gail, "I became aware that I had always been the rescuer, taking the responsibility for everyone in the world on my shoulders. And I realized that I cannot survive that way. It became evident to me that I needed to learn new skills, such as how to just be 'simple,' how to be present, how to live in this moment."
DISCOVERING YOUR DEEPER VALUES
Related to the lessons about being versus doing is a more general re-examination of values about living. This, naturally, brings different insights for different people. Bernice offers us the following reflections:
"It's made me more compassionate, more understanding. It's made me slow down and smell the flowers, and get off the rat race and start looking at what's real 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."
And Gini reveals a deeper reverence for life: "I've learned to cherish life a lot more than I did before, with a lot less taking for granted. I cherish my husband more too, our intimacy and our everyday life."
DISCOVERING INNER STRENGTH
After recovery, people have often reported 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 making 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."
LOOKING WITHIN: THE VALUE OF INTROSPECTION
One of the most rewarding experiences for me in leading self-help retreats has been in witnessing tremendous breakthroughs of self-discovery. People who would never have had anything to do with introspection or personal growth become genuinely interested in themselves for the first time. Some who would never have considered meditation discover how nourishing and healing it can be simply to become quiet and look within.
I have seen the discoveries that have been precipitated by CFS truly transform people's lives. For example, consider the results of Gail's search:
"I really went on a treasure hunt of the things that I could do to make my life better. First of all I had to look inside and see what was wrong in the first place. One thing was my 'controlling' nature. I had always thought that I could control other people. I thought that if they failed it was my fault.
"I thought my mother's death was my fault. I thought if I had done something better, she wouldn't have died. If I had taken better care of her. . . Realizing that it wasn't my fault or my responsibility that she died was a major step. She had told me many times that she was ready to go, and I didn't want to hear it. Also, realizing that death is not a failure was a real big one for me.
From Sarah's perspective, a great deal of suppressed emotion was unearthed: "I'm finding out that I have been walking around with a lot of angry and frightened feelings for a long time that I simply haven't dealt with."
This theme is repeated 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 negative thinking, self-doubt, self-hatred, and guilt all my life. The illness has forced me to realize it, and 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 a change in the frequency or quality of prayer, as noted by Mike in Chapter 6. This is supported by Gini, who tells us, "I would say 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 had to really 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.
Lessons in Relating to Others
As reflected in Debbie's comments above, having a more accepting relationship with yourself will affect your relationships with others. I have often heard former patients point to a deeper sense of empathy or compassion for others, learning the meaning of forgiveness, and learning to set boundaries in relationships.
EMPATHY AND COMPASSION
The mystics have taught for thousands of years that suffering is a universal and unavoidable human experience. Yet for many of us in modern times, it takes a chronic illness such as CFS to give an experience of the depths of suffering. This will inevitably lead us to a greater ability to empathize with others who are in deep suffering.
A good example of this is offered by Mike, who states: "In my own profession (physician) I believe everything patients tell me now. I have more empathy. After experiencing CFS, I know what it's like to have a chronic illness, so I think I'm probably much more compassionate than I ever was before, and that has been a real help for me in my work."
For Gini the effect was felt in terms of being accepting and nonjudgmental of others: "I've grown in my acceptance of people. I am more patient, and I'm a much less critical person than I used to be."
Many spiritual traditions have taught that forgiveness is healing for the soul. Yet very often we are unaware of resentments we are carrying, which can create an undercurrent of stressful responses in the body. Most likely you have had your share of abuse at the hands of uninformed or insensitive health-care providers, and it would not be unexpected that some resentment is there. Yet forgiveness can be empowering. ft helps us let go of the past. It frees up vital energy that may have been going into festering resentments that will never he resolved.
Bernice offers this observation: "One thing that I'm working on now is forgiveness. I'm having to forgive my husband, my mother, my brother, and all the doctors who for four years told me I needed to go to a psychiatrist. I'm working on that a lot, because I don't need to hold that hate inside."
Various rituals can be used to release resentment. An example is to write down a list of all the resentments you are still carrying from the past, going as far back as you can. Then burn the paper and release the resentments from your life as you see them go up in smoke.
One of the more crucial changes of lifestyle in the recovery from CFS is in setting boundaries. As we shall see below, this issue is played out in many ways. Several aspects of this are summarized in Bernice's statement that, "I've had to set limits and boundaries. My kids have to know what those boundaries are, my friends have to know that I'm ill and I can't make plans beyond today. I've had to educate the people that are around me about my limitations."
It is an issue that comes up within the home as well as with outside relationships. But perhaps the most difficult place to set new boundaries is with family members, where roles have been established for a long time.
Tina offers us an example which would be a stiff test for most anyone, even without CFS:
"My daughter (age seventeen) was very angry with me for not being able to manage things. Even now, it makes her angry, because when I start getting symptoms I start taking care of myself again, putting myself first again. This always affects other people because they want my energy. My daughter had a tantrum, and I simply chose not to respond.
"A few days later she came to me and we had a beautiful talk because I had stood my ground, and she finally accepted it. Standing my ground was good for her in that she realized that I wouldn't always be there for her. That was difficult for her at first because she had always counted on it. She realizes now that she has to be responsible. The breakthrough is not so much that she has more respect for me as that she realizes she isn't always going to get what she wants from someone else."
We could assume that this step toward emancipation for Tina's daughter would have come sooner or later anyway. Yet it was precipitated by Tina's having to set limits in order to care for herself. It reminds us that people, and perhaps children especially, are often more resilient than we give them credit for.
Another area of boundary-setting is in what I call "toxic" relationships. Debbie found that avoiding such contacts was a necessity for her in maintaining her balance. She states:
"I simply try to avoid anyone who is not an uplift for me. My brother and sister, and my in-laws don't understand or accept CFS. So I just don't relate to them. It's too stressful.
"Also my best friend has marital problems, and I haven't spoken to her for months. It's just too much when she wants to talk about her problems, and that's all she wants to talk about. As much as I love her, and she knows this, I avoid her because she's not good for me to be around now. I tell people why I'm avoiding them, and they accept it." This was a gutsy position for Debbie to take, but like Tina, she chose to stick with her boundaries and communicate honestly about them.
Another perspective is offered by Sarah, who was an activist for several years in the CFS patient advocacy movement. After being heavily involved in the information and referral network, as well as support groups, she reached a point where she had to let it all go in order for her healing to progress.
"For almost two years I didn't want to be involved on any level with anyone who had CFS. I was well and it was upsetting for me to be around them, so I kept myself pretty isolated from it. That was all part of my healing process. I needed some distance from it.
"I've been back working with the CFS people this year, but I'm coming back because I believe it's important to stay active in the movement. It's true that I am sad when I see people so ill, but it doesn't pull on me like it used to. I've got my boundaries now, and I can leave it behind."
For many, the lesson of boundaries is that old patterns of accommodation do not work. As Debbie tells us, "I've learned to say no. Not that I'm a bitch, but I used to be a doormat. Now I can say no when I need to-to my mother and my family members, even my best friends." New ways of relating are needed, based on honest communication about needs, energy levels, and willingness or unwillingness to give to others. Many patients have discovered that they must care for themselves first, even though this goes against their old training to always defer to others.
Perhaps it is good to reflect on this compelling insight about how your body keeps itself alive: Your heart pumps blood to itself first.
The effects of CFS on couples have ranged from devastation to transformation. Some relationships do not survive intact, while others seem to flourish. Any couple experiencing a chronic illness undergoes a test of commitment to the relationship. For some the test is an easy one, while others are unable to sustain the stress. For those who do hang in, the rewards are that the relationship is strengthened for having been through the adversity together.
For example, Mike and his wife come from a religious back-ground with a strong family orientation. Through the struggle with CFS, they used some marital counseling to improve their communication skills and ventilate feelings. In retrospect, Mike stated "I think our relationship is much better than if I hadn't gone through this. It's been a big blessing in disguise."
A similar experience is reported by Gini, who states: "I believe it has strengthened our relationship. He completely revamped his work situation to take care of me, and the result was a lot more intimacy. He now says, 'What I have with you is five hundred times more than I thought I would have in my life.'"
But others had a rockier road before things smoothed out. Gail describes her experience as follows:
"We fought when I was first ill. When I didn't know what was wrong with me, I was angry so I took it out on him. I made his life miserable. I threw him out a couple times. I thought if he can't deal with this, I can't deal with it either.
"I was always angry because I felt I had the responsibility to do everything. Now it's different because I don't feel I have that responsibility.
"Our relationship is now better than it ever was. We communicate a lot more. There's less pushing for things to be done. My husband has learned a lot of patience. The illness helped me to see him differently, too. When I found that I didn't have to be the 'doer' all the time, and I allowed him to do things, then I started seeing him in a different light.
"We're a lot closer. He has said our marriage is one hundred percent better than it was before. He learned that he could lose it, and it frightened him. He'd never really thought about that."
On Being a Spouse
Being the spouse of a person with CFS can have its own lessons, no less valuable. For Dick, Bernice's husband, there was a period of painful soul-searching over several years. "It got me in touch with what helping one another is really all about," he says, "and that made me a lot deeper. I had to turn within to answer a challenge as severe as this. There was no other way. And that deepened our relationship.
"Either I had to accept it and dedicate myself toward solving it, or give up. There are a lot of people who give up~ I'll tell you what: I don't blame them. This is the toughest thing I've ever had to deal with, and I don't even have the disease."
Dick summarizes his learning by saying, "It allowed me to deal with the real core issues. I think we're basically here to learn about relationships, and learn about loving one another."
Deidra, Mike's wife, had a similar experience. The most difficult part of CFS for her was handling Mike's personality changes, and especially coping with his paranoia. "I learned the importance of patience, and having the willingness to endure to the end. I learned tolerance.
"My religious faith was very important. I developed a lot of faith that this was temporary, and that I could live through it. It was clear to me that the situation could either tear our relationship apart or strengthen it."
Now that her husband is well (and jogging four or five miles several times a week), she expresses gratitude that their marriage has continued at a deeper level after CFS.
Acceptance of "What Is"
One of the ways that we add to our suffering is in our nonacceptance of what is true now. Our denial of the truth of our circumstances postpones our acceptance of, and our working with, the present. Energy is consumed by our struggle to hold on to the past, which is impossible and prevents us from living fully now.
One consequence of this for many people with CFS is depression. I refer here to the depression that can arise as a result of our appraisal of our circumstances, not as a result of the chemical changes from the disease process. The antidote to this kind of depression is acceptance of what is true now, and letting go of our fixed ideas from the past about how things should be. This is illustrated beautifully by Debbie, who states:
"I don't get depressed anymore. I used to, but I've learned acceptance. I accept that I could be sick the rest of my life, and I have to just appreciate every day, every moment. And I accept that a miracle could happen and I could recover any day."
Another example is offered by Bernice, who comes from a history of high achievement in many areas of her life. "I have had to realize the fact that I cannot do what I was doing before, owning my own business, running, and being an active mother. I'm having to release that and be okay with what is so now, which is very difficult.
"But I have surrendered to the belief that it's my journey, and that I will come out of it a better person. I try not to dwell on the past and who I was then. I just know that I am becoming someone new."
Bernice and Debbie are among the more severe, long-term cases I have known, each lasting several years. They could easily have caved in to despair, seeing that their lives are not going according to their dreams. Yet they have courageously chosen another path.
Using CFS as a teacher gives you the opportunity to make this a time of growth and self-discovery. You may not have chosen this path of learning if given a choice, but you will certainly benefit for the rest of your life from the lessons it brings you, if you are open to them.
(c) William Collinge, Ph.D.
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