Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Part 1)
December 13, 2002
Chapter 6: Changing Your Lifestyle to Promote Recovery
By William Collinge, Ph.D.
[Editor's note: This is Part 1 of 2. Part 2 will be included in the December 18, 2002 ImmuneSupport.com email bulletin.]
"I want to get rid of this thing as fast as I can, because I've got so much work to do." -- Joanne
All the experts agree, especially in the absence of a medical cure, that lifestyle change is the necessary foundation for recovery from Chronic Fatigue Syndrome (CFS). According to Paul Cheney, M.D., this is "easily the most important and often the least emphasized" part of treatment. And the body itself, if it too could be considered an expert on what it needs, seems to be saying the same thing. The illness demands dramatic and sometimes painful decisions to change one's way of life.
In this chapter we will take a thorough look at all the areas of lifestyle that can contribute to recovery from CFS. The chapters that follow are intended to help you follow through with healthful changes.
This discussion should not be construed as suggesting that CFS is a disease of lifestyle. Far from it, for we have already discussed the multicausal perspective. However, just as any disease process is multicausal, so too is recovery. The way various factors combine to allow disease does not necessarily dictate what factors will promote recovery. In other words, even if genetic vulnerability played a larger than usual role in one person's developing CFS, this does not mean that lifestyle factors cannot be the key in swinging the body's balance back in the direction of health.
How can changing your lifestyle influence the course of illness? Experience with what were formerly thought of as irreversible illnesses such as metastatic cancers, AIDS, and heart disease has proven that profound lifestyle changes can cause dramatic changes in the course of illness. In some cases people have been able to completely break the textbook rules of disease and arrive at previously unheard of recoveries. An example of this is Niro, a documented case of AIDS who recovered and converted back to HIV negative. Another is Larry who recovered from metastatic pancreatic cancer, even though his doctors agreed that what little chemotherapy he was taking could not possibly have made any difference.
In the medical world, these are usually labeled "spontaneous recovery," implying that since the recovery could not be attributed to medical treatment, it must have happened all by itself as a random fluke of nature. It certainly could not have anything to do with the person with the illness!
Dr. Kenneth Pelletier of the University of California-San Francisco Medical School studied the common denominators in people sharing the experience of such unexplained recovery. He found the following qualities to be often present:
• profound intrapsychic change through meditation, prayer, or other spiritual practice;
• profound interpersonal changes as a result, placing relations with other people on a more solid footing;
• alterations in diet, no longer taking food for granted, but choosing food carefully for optimum nutrition;
• a deep sense of the spiritual as well as material aspects of life; and
• a feeling that recovery is not a gift or spontaneous remission, but rather a long, hard struggle to be won for oneself
What can people with CFS learn from this? Clearly these are all factors that involve lifestyle change. Research has shown that these changes have their beneficial effects by altering the chemical and emotional environment within the body, thereby affecting the immune system. A lifestyle which has such beneficial effects may be called "salutogenic," in which "saluto" means health and "genic" means to generate or create. This is the opposite, of "pathogenic," or generating pathology.
Tina's story offers us an example of what it means to make the transition to a salutogenic lifestyle:
"I quit my job, got the stress out of my life, got into therapy and started becoming aware of myself and how I live. Fortunately, I could take a job as a consultant, and only had to work part time to make the same salary I made before. I'm not sure I could ever work full time again, unless it was something I loved so much it didn't matter. I now actually enjoy the company I work for. I no longer put myself in a position of getting so stressed out that I am likely to relapse."
Let us now consider several aspects of a salutogenic lifestyle I have found important for people living with CFS.
OPTIMISM AND BELIEF IN RECOVERY
Do you believe recovery is possible for you? Do you believe you can have some impact on it? And can you picture yourself recovered? Belief in recovery is square one. Whether it is recovering your pre-illness level of functioning, which many have done; recovering the quality of your life; or recovering a sense of balance and harmony even within limitations, there needs to be some positive expectancy that your life can be better than it is now.
There is mounting evidence that optimism has an effect on recovery from chronic illness. For example, studies by Michael Scheier, Ph.D. and his colleagues at Carnegie Mellon University in Pittsburgh have found faster recovery in optimistic patients with cancer and heart disease than in those who are pessimistic, findings that are likely to apply to people with other illnesses as well. Optimistic patients recovered faster from surgery, had fewer complications, and had higher quality of life six months later. The researchers found that when patients are optimistic, they formulate plans for action, and stay with them through pain and adversity.
How can you strengthen your optimistic attitude? Give yourself a quiet time to form an image of what recovery truly means to you. Considering what you have learned about CFS and the experiences of former CFS sufferers, make a realistic appraisal of the severity of your illness, your strengths and inner resources, and then decide for yourself where you are headed with your recovery program. You may wish to have stepping stones along the way, small goals within reasonably easy reach, to encourage you along. But the belief must be there that life can be better, and that recovery of something you value is possible for you.
Without belief in recovery, in whatever form, there will be no incentive to follow through with the lifestyle changes needed. This inner image of your recovery must be in place.
ACCEPTING YOUR LIMITATIONS
One of the most difficult yet important challenges in CFS, as with any chronic illness, is accepting limitations. The fact is you are not the same person you were before, and we have already mentioned the importance of acknowledging this. Consider Sarah's experience:
"I haven't pushed my limits. Before I got CFS, I was running 12 to 15 miles every day, training for half marathons and marathons. Even though I'm over it, I don't do that any more. I don't run more than 6 miles at any given time now for this specific reason: I'm no longer interested in testing my limits or competing. I've done it all, it's behind me. I learned that the hard way. That's an important point to put across because there are so many CFS patients who were athletic, who did push their limits, who are compulsive, high energy, goal-directed people. They have to learn a new way."
In some cases, it may even be necessary step out of your familiar roles at home, as described by Debbie:
"I have an understanding with my family that when it gets to be too much at home, I can just leave. I might stay at a friend's house or at a motel. I can even walk out on things in the middle. If I'm cooking something and I need to leave, I just leave."
Often the acceptance of limitations means a shift of identity away from your outward accomplishments, your "doing," as the indication of who you are and whether you are fully alive. This cultural emphasis on "doing" is deeply ingrained in us. It comes into direct conflict with the body's messages in CFS, that rest, or "simply being," is needed for healing.
When the desires of the mind and the abilities of the body have parted company, our tendency is to resist, to argue with the body. We may take the attitude that limitations are a challenge or test, or, worse yet, a sign of defeat. Yet, to reiterate what has been said earlier, the more we attempt to push through limitations, the more we are likely to cause an exacerbation of symptoms or trigger relapse.
For many people this means dramatic reduction in working hours. In more extreme cases, it means stopping work altogether. To the degree that your work is your source of identity and meaning in life, this can be painful. And of course the financial hardships this may bring may be even more painful. Yet, the fact remains that in order for the body to have the optimal conditions for healing, rest is needed. Not only for the body, but for the mind as well.
There are several stresses at play here. One is the stress of the illness itself. Another is the stress of work, which may not necessarily be thought of as a negative stress, but still, to the degree that it involves challenge and any demands at all, the body may experience it as stress. And third is the stress created by your reaction to the limitations being forced upon you.
To be able to take a philosophical attitude or somehow accept and flow with these limitations will go a long way toward supporting your healing process.
This of course is where the fifty percent solution takes on even greater significance. If reducing your work is forcing a reduction in your income, it may mean making major changes in your living arrangements. In a worst case scenario, this may mean moving to less costly accommodations or even living temporarily with relatives or friends.
Some would perceive this as a demoralizing situation, yet it may be the only viable alternative to struggling and stressing yourself to work more than you are able and interfering with your healing process. Again, your reactions to the limitations imposed on you can help you or can themselves be an added source of debilitating stress. Accepting such limitations gracefully can be difficult, but it can be done.
THE VALUE OF SUPPORTIVE RELATIONSHIPS
One of the fascinating areas of research in health psychology in recent years has been the effect of relationships on health. It is now believed that supportive relationships help "buffer" the person from the effects of stress. Some researchers even call social support a form of inoculation against illness.
What is a supportive relationship? This would probably be answered differently by different people. But there are some basic attributes on which most would agree. One of these is open communication. This means honest sharing of feelings, wants, needs, and caring. It also means that the parties feel free to say "no" when they wish, without feeling guilty. In this environment of mutual respect, there is freedom to be oneself without fear of judgment. There is a feeling of acceptance, and an encouragement of self-acceptance on both sides.
On the other hand, relationships in which there is an undercurrent of tension, fear, or inability to freely be oneself may be described as toxic relationships. They can literally have a toxic effect on the body, in terms of the chemistry of stress that they stimulate.
People with CFS benefit from supportive relationships in several ways. Mood and morale are likely to be better. Follow through with lifestyle changes and medical treatment are likely to be better because of the encouragement and support of others to do so.
Coping with stress may be more effective because of guidance or encouragement from others. Feelings of having purpose or meaning in life may be stronger, and contribute to greater will to live and hope for recovery. All these factors can translate into better immune functioning and resistance against illness.
The people closest to you can play an important role in your healing. They can contribute the healing, supportive environment which you need. They can give you love, encouragement, and help in carrying out the various lifestyle changes you need to make. They can help you with practical matters such as getting to medical treatment, shopping, or completing tasks around your home.
They can help you follow the fifty percent solution, accept your limitations and encourage you as you walk the path of self-empowerment.
However, none of these forms of support will be forthcoming unless you communicate your needs. The key to social support, as in all human relationships, is communication. Those around you are going to need your help understanding what CFS is, as well as what forms of support you need.
Some people with CFS are lucky enough to have a supportive network already in place. However, others are not so lucky and must orchestrate the support they need. If this is the case for you, one of the best ways to do this is for you or a loved one to call a gathering to communicate about your situation.
Whether it is a pot luck dinner, a family meeting or a larger gathering with friends or co-workers, this can be a very effective way of organizing support.
Symbolically, such a gathering sends a powerful statement all those involved: we are part of a larger whole, a tribe, we are connected. Even though such an idea may sound bold, if you give it a try you are most likely in for a pleasant surprise. This is actually a tradition thousands of years old in simpler societies.
The experience of giving to another in need brings its own rewards. By accepting support from others, you give them an opportunity to feel valued and included in your life. This is a form of intimacy that we all need in an age where separateness and independence are over-emphasized. However, you have to be open to asking for and receiving the support you need. Many people with CFS have been profoundly moved by the unexpected degree of care and support they have received.
Families face special difficulties as a result of CFS, since illness in one family member affects the entire family system. One very helpful response is the family meeting in which all members are able to express their feelings and needs. Such a meeting can be set up so that everyone has a turn in talking about what is important for them, and can ask questions. Many families have a regular evening each week specifically devoted to this kind of communication.
Very often, marriage and family counseling sessions can help enormously in maintaining lines of communication. Whether such counseling is with a psychologist, clinical social worker, counselor, minister, or a member of your medical team, communication will be the key. Communication itself has a healing effect on relationships that are hurting. Many CFS patients have reported their families have grown closer and have benefited from facing the adversity of CFS together.
Do you consider yourself a person with high self-esteem? Can you find feelings of love, compassion and unconditional acceptance toward yourself? If so, then you will have an easier time following through with healthful lifestyle changes, and in general coping with CFS. But if there is an inner climate of self-criticism, self-judgment, or guilt, then the kind of inner support you need is not likely to be present.
Many of us have lived lifestyles in which low self-esteem, high self-criticism, and a never-ending quest for the approval of others have dominated our behavior. If this is the case for you, CFS can serve to force you to re-evaluate your relationship with yourself, and make a shift toward valuing or esteeming yourself more highly.
One way this positive shift can be expressed is in how you spend your time. Do you surrender your life to the television? Do you occupy your time reading romance novels, or perhaps worse, CFS research?
Quality alone time is time in which you are fully present with yourself rather than being absorbed by something outside yourself. This kind of presence is not only a natural antidote to the effects of stress, it will help you remember who you are, to remain in touch with your needs as well as your higher goals and purposes, and remain intimately aware of the ebbing and flowing of your body's cycles.
Rarely in our society are we encouraged to spend quality time alone. By quality time I mean time spent in introspection or self-care, really being present with ourselves. This can be time spent in meditation, prayer, journal writing, or contemplating nature. Perhaps you choose to pursue a self-healing discipline, such as deep breathing, deep relaxation, guided imagery, gentle yoga, or a number of other practices. Or it may simply mean sitting quietly doing nothing, watching the grass grow, and letting both mind and body rest.
PLEASURE AND ENJOYMENT
Even if it means settling for pleasures much simpler than those you became accustomed to before becoming ill, find ways to include pleasure and enjoyment in your daily life. Whether it comes in the form of physical touch or contact with another, watering flowers, cultivating your taste in music, or becoming a connoisseur of bath oils, you can develop your own repertoire of simple pleasures.
Keeping pleasure in your life sends a powerful message to your subconscious--one which supports your self-esteem and feelings of worthiness, and helps maintain your morale. But this contribution to your inner harmony and balance is only half the benefit. Pleasure also causes beneficial changes in your blood chemistry, which help your body's healing responses.
The health benefits of pleasure have been studied by David Sobel, M.D., M.P.H. Dr. Sobel is Regional Director of Patient Education and Health Promotion for Kaiser Permanente Medical Care Program of Northern California. He points out that our affinity for pleasure played a major role in our evolution as a species. The experience of genuine pleasure alters our biochemistry in a way that promotes our host resistance. Hence there are real links between health-promoting acts, positive feelings, and health.
The simple pleasures listed above can all have a calming and relaxing effect on the body, soothing body and soul from the effects of stress. However, as Dr. Sobel emphasizes, pleasure is not limited to experiences of the senses. Acts of generosity, altruism, and gratitude also are pleasurable and bring about beneficial responses in your body. He concludes that these acts represent not only moral virtues; they may be essential contributors to a longer, healthier life.
However ill you are, you can probably find a way to experience selfless giving and reap the health benefits of altruism. Simple acts of kindness or consideration can be done with people around you, as well as with pets or plants. You will be doing your body a wonderful favor.
As the experience of illness draws your attention more and more within yourself, you may find yourself increasingly interested in the spiritual aspects of your life. And indeed, there are questions which science and medicine cannot answer which are more the domain of the spiritual.
Why do I have this illness? Is there any meaning in it? For many, the crisis of CFS has provoked profound spiritual searching and introspection. This in turn has borne fruit in the form of a greater sense that we are more than either our bodies or our minds, and that there are sources of support and energy within that can help us get through the hardest times. Whether you explore your spiritual life through a form of organized religion, on your own, or with friends or loved ones, there is a good chance this will contribute to the quality of your life.
In addition, there is now evidence that physical health is influenced in a positive way by religious faith. David Larson, M.D., a psychiatrist with the National Institute of Mental Health, recently reported a twenty year study in which people's belief in the importance of religion was linked to healthier blood pressure levels. In another study, Larson found that religious older women recovered more quickly from broken hips and with less depression that their non-religious counterparts.
A related line of research connects religious faith and mental health. Here too there is mounting evidence of benefit. In a review of 200 studies, a team of Maryland researchers concluded that religious faith eases depression and is linked to better recovery from mental illness. It is not difficult to see that people with CFS will benefit from anything that eases or buffers the emotional stress of the illness. Indeed, several patients have told me that their faith has strengthened through this ordeal. According to Mike, "I've been pretty religious all my life, but through CFS I think my prayers had more depth and intensity, and more thought went into them than before. Now, that hasn't changed."
This illness may provoke you to reconsider your life goals and purposes. What is your purpose for getting well? Is it simply to resume being a productive worker? Is it to resume the pleasures you are currently being denied? Or are you becoming aware of higher goals and more important dimensions of your life that give it real meaning? Are you living according to your deeper values? Many people with CFS find that the purpose or meaning of their life shifts, that their values change, and that the changes brought by illness have enriched their lives.
For more information, visit http://www.healthy.net/collinge/.
© 2002 William Collinge, Ph.D.
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