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:
- The importance of making psychological adjustments
- The need to play an active role as a patient
- The usefulness of experimenting to find what works
(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 bottom of this article.)
Accept Your Illness
Both ME/CFS 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:
- Accepting that life has changed on a long-term basis
- Educating yourself about your illness
- Getting support, including the help of a sympathetic doctor
- 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 ME/CFS, but it will be different than life was before."
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