Advice to a New Patient
By Bruce Campbell

What are the most important things to remember in coping with Chronic Fatigue Syndrome or fibromyalgia? We asked that question of several groups of people participating in our program in 1999. Specifically, we asked them to imagine that a newly-diagnosed CFS or fibromyalgia patient approached them for advice, asking what three or four things they had found most helpful in coping with their illness.

The responses of people queried in 1999 clustered into six themes. About two-thirds of people mentioned one or more aspects of the following three ideas:

1) Accept Your Illness

Whether you have CFS or fibromyalgia, your illness is real, physical, and long-term. Getting it was not your fault. While your should accept that your illness is long-term, you should also be hopeful because there is much you can do to improve your life. Rather than fighting your condition, be compassionate toward yourself as someone with a serious illness.

As one student said, "The single thing that has probably helped me most with living with my disease is accepting that I have a chronic illness. Since I started to plan my life around my illness, my life seems to have improved. For a long time, I was in denial of my disease and lived in hope for the day it would just go away. My life seems better since I accepted that I have to adapt to the illness."

Another student emphasized the challenge of adjusting to loss. She said that a new patient is likely to go through a grieving process before reaching acceptance. "We grieve the losses this disease has caused in our lives. Our lives are drastically changed by our illness."

2) Live within the Limits of the Illness

Adjusting your activity level to the limits imposed by the illness is one of the most helpful coping strategies you can use. In our course, we call it "living within the energy envelope." The idea is that we have less energy than before. If we try to do too much, we usually trigger an intensification of symptoms that forces us to rest. In contrast to living life on this roller coaster, we can gain some stability if we learn to live within our limits.

To do this, you need to learn to listen to your body and respect its needs. Having limited energy imposes the need to simplify and to prioritize. By pacing yourself (balancing activity with rest) you can gain some control over your illness and bring stability to your life.

One student summarized the idea of accepting limits by saying she would advise "setting priorities, really getting down to basics and saying no to activities that do not fall within our personal agendas. It is essential to preserve our energies for activities that help us get better. This becomes most difficult when we hate to disappoint special people in our lives, but we must remember that if we do one thing, we can't do another."

Another said that she believes the key to living successfully with chronic illness is to adapt life to the illness, and not just as a short term strategy. Looking back, she believes she clung to the idea of getting better too long. "I really needed to be told, life will not be the same. I needed to learn to manage my life from that point on, very carefully, much as diabetics and others with chronic conditions do."

3) Get Support

Chronic illness can be isolating and demoralizing. Others may not always understand or sympathize. Having people in your life who acknowledge your suffering and offer support can be crucial. Seek out support from fellow patients, who understand because they share your situation. Stay connected to family and friends to the extent possible, but be realistic in your expectations. Some people may never understand.

A third to half of those responding mentioned three other themes:

4) Keep a Positive Focus

Though there is as yet no cure for either illness, improvement is a real possibility. Through your efforts, you can gain some control over your illness. Regardless of your situation, it is possible to lead a meaningful life, so value and take care of yourself. In the words of one student: You have a choice in every situation. You can be defeated by it or learn and grow from it.

5) Educate Yourself

Many treatments are used for the two illnesses, with new developments occurring all the time. No cure has been found to date for either illness and no treatment has proven widely helpful. Seek out information and options about the illness. Experiment to find what works in your individual situation.

6) Rest Daily

Integrate regular periods of rest into your day, regardless of how you feel. (In the course, we call this pre-emptive resting or resting as a preventive measure.) By taking scheduled rests-lying down with your eyes closed in a quiet place-you may be able to prevent flare-ups or reduce their intensity. Such rests can help lower symptom levels and increase a sense of control.

Other Themes

Other themes mentioned included getting exercise and avoiding stress. A surprising result was that only about one person in ten mentioned medical care as being important to their coping.
Summary

In summary, members of our groups think that the foundation for coping with CFS and fibromyalgia lies in the combination of accepting the long-term nature of the illnesses, adjusting one's life to live within the limits imposed by illnesses, and having supportive relationships. They also believe that a hopeful attitude is both realistic and effective, and that self-management includes education about the illness and experimentation to find what works in an individual situation.

Advice to a New Patient: 2005
By Bruce Campbell

What are the most important things to remember in coping with Chronic Fatigue Syndrome or fibromyalgia?

We asked that question recently of about 50 participants in our self-help program, telling them to imagine that a newly-diagnosed patient approached them for advice, asking them what two or three things they had found to be the most helpful in coping with their illness.

Their answers may surprise you. No one mentioned any specific medications; rather, their advice focused on three points: 1) the importance of making psychological adjustments to long-term illness, 2) the need to play an active role as a patient, and 3) the usefulness of experimenting to find what works in individual situations

(Note: This is the third time we have asked this question of people in our program. You can read results of the earlier inquiries by following the links at the end of this article.)
Accept Your Illness

Both CFIDS and fibromyalgia are long-term illnesses that impose limits and require adjustments. Some of the adaptations are practical, but, for many people responding to the question, the psychological adjustments were, if anything, more important. Without an acceptance that life has changed on a long-term basis, people find it difficult to start making the practical changes that can improve their lives. One student wrote: "Life has just changed. Just repeat that to yourself and start the process of acknowledging this. Find the new ‘normal.' [You] cannot go back to the old ways of living; have faith you will find new ways in time." Another said: "You didn't cause the illness nor are you imagining it; it's real and you have to adjust to the reality. It is not amenable to mind over matter!" Several people sounded a cautionary note, saying that they believed people could avoid long-term damage by accepting their limits and doing financial planning early on. One wrote: "My unwillingness to lose income resulted in my continuing to work even though I was way too sick to do so. I'm certain that it's because I did this that I'm virtually house bound today."
Grieve Your Losses

Part of adjusting to long-term illness is mourning all the losses brought by illness: loss of good health, loss of friends, loss of financial security, and loss of the future you had envisioned for yourself. One respondent wrote: "You will need time to mourn your loss. The fact is you are now not the same person you were...you cannot do the things you once did." Another said: "I had to go through the entire grief process before I could learn to manage my illness with any kind of success."
Educate Yourself About Your Illness

Long-term illness challenges you to take on a different and more active role as a patient than you may have had with previous illnesses. Many respondents spoke of the importance of understanding your diagnosis and the many treatment options available. One wrote: "Educate yourself. Read the books recommended by [other patients], the CFIDS association, the Arthritis Foundation --anything that does not promise a fast cure, because that would be rare. Then listen to your doctors, weighing what your doctor says against what you have researched yourself. Then be an active participant in designing the treatment plan that works for you."
Get Support

Having your life turned upside down is a disorienting and often isolating experience. Support in various forms can help. As one person wrote, "[Create a] support network. This network should ideally include their healthcare providers, family, spiritual leaders and friends who are committed to be there for this person."

Many respondents mentioned the support offered by fellow patients and patient support groups, saying things like "realize that you are not alone, there are people who understand what you are going through." Others emphasized the helpfulness of one-on-one support, whether from a therapist specializing in long-term illness or a special friend or confidant. One person said: "If possible, find someone else who has a chronic illness that you can talk to. I have two close friends with MS and they both played huge roles in my acceptance of my illnesses and in learning to live with them."
Find a Helpful Doctor

Even though living with long-term illness means much more than managing symptoms, a doctor can be an important part of your response to illness. Respondents advised looking for someone who believes that your illness is real and who is willing to experiment to find the treatments that are helpful in your individual situation. But they also voiced various cautions. One said: "Get a good, proactive doctor who understands your illness and isn't fixated on his/her own approach. You need a supportive doctor aware of his or her limitations." Another wrote: "Listen to their advice, but decide for yourself what suits you best. You will become your own expert on your condition." A third said: "Speak up if their treatment isn't working after a reasonable amount of time and change providers if you feel they are not meeting your needs."
Experiment with Treatments

There are no widely effective medical treatments for either CFIDS or fibromyalgia. This fact has two implications for patients' efforts to feel better. First, it means that treatments have to be individualized for each patient. Second, most patients have to experiment before they find what works for them. Working with a doctor, they usually try various medications, but they many also experiment with alternative practitioners and approaches as well. Many reported using a variety of strategies, not just a single approach. In addition to trying prescription medications, respondents mentioned using yoga, acupuncture, nutrition, supplements and hypnotherapy. One student's response is a good summary of this process:

A friend of mine, who also has FMS, said to me, "You have to find your own way. It may take a year or so, but you are the one to have to do it." I was really angry and upset [at] such an unfeeling comment. I was in pain! How could I possibly do that by myself? In looking back, that was great advice. It made me mad enough to look for alternative treatments, do research, and in the process, gather my support people, find the [self-help program] and many other things. Trial and error has made me find what works for me.

Various kinds of lifestyle change were also mentioned frequently, especially pacing and logging. Pacing means finding the right balance of activity and rest to control cycles of push and crash. A common theme was the idea of learning to listen to one's body and the signals it sends. One person said "For a long time, I told my body to shut up; that was a mistake." Another said: "My first piece of advice would be ‘listen to your body'. Getting well requires a shift from trying to override your body's signals (in order to continue what you were doing) to paying attention when your body tells you to stop or slow down. By heeding these signals at an early stage, you may forestall the development of even more severe symptoms."

A third person explained how she had come to live by the idea that all her actions have effects on her symptoms. She advises asking if you can live with the payoff, if you are willing to accept the consequences. Several people mentioned that they found logging helpful. By keeping records, they learned what works for them and what doesn't.
Have Hope

Finally, respondents stressed that it is possible to have a good life with long-term illness. Several people observed that they had learned how to manage their illness. One said: "You can improve or at least live better with your illness." Several others said that they had found it possible to live a good life with long-term illness, though they stressed it was a different kind of life than they had before and different from the life they had planned for.

One said: "It is possible to find a new life, one that is joyful and rewarding." A number of others said they liked their new lives better. One wrote: "I don't want to go back to the driven person I used to be. I like the person I am becoming much better." Others stressed the importance of attitude, especially how you view your situation. One said she found it important to be compassionate toward herself rather than blaming herself for getting ill or feeling guilty.
Conclusion

Patients in our program believe that learning to live well with chronic illness is based on several principles: 1) accepting that life has changed on a long-term basis, 2) educating yourself about your illness, 3) getting support, including the help of a sympathetic doctor, and 4) experimenting to find what combination of treatments and lifestyle adaptations work in your individual situation. Respondents also stressed that a life with long-term illness can be rewarding. As one person said: "You can have a good life with FM or CFIDS, but it will be different than life was before."