More 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 several years ago of people in our program and published the results as "Advice to a New Patient." Recently, we surveyed current members of our groups on the same issue. Specifically, we asked people in our self-help program to imagine that a newly-diagnosed CFIDS or fibromyalgia patient approached them for advice, asking what they had found to be the most helpful strategies in coping with their illness. Here’s how they responded. 

1) Educate Yourself

About two-thirds of people responding mentioned the importance of educating yourself about your illness. Long-term illnesses like CFIDS and fibromyalgia are different from short-term illnesses. Instead of being temporary interruptions of life, they become major facts around which life turns. They will be around for the long haul and patients can manage them better if they have information about treatment options and day-to-day coping strategies. Long-term illness also implies a different, more active role for patients, who may know more about their illness than their doctors. Information can help you to be a more an effective advocate for yourself.

Since both CFIDS and fibromyalgia affect each person differently, many people advised learning about how CFIDS or fibromyalgia affects you individually. As one person said about living with fibromyalgia: “It takes paying attention to and noting your symptoms, your environment, your food intake, your physical and mental activity level, your emotional state, and your stressors to begin to understand how fibro impacts you. You are your own Science Fair project. YOU have to discover what works for you; not just what works for other people.”

A useful approach is to view your situation as one of experimentation, trying different treatments and approaches to find what works in your situation. Keeping a journal or health log can aid this process.

2) Adapt To Your Illness

Almost everyone mentioned the importance of adjusting to living in a new way. Part of the adjustment is psychological, involving acceptance that CFIDS and fibromyalgia are long-term conditions that impose limits. Adjusting to them involves going through a process of grief, mourning all the losses brought by illness, including the loss of the future you had envisioned for yourself. One person advised: “Realize that your life has profoundly changed. You will need time to mourn the loss of your old life and to learn how to best live your new one.” Another said: “Remember that you have personal resources that are valuable to others even if you can't contribute as much as you want to physically. You have skills like simply listening to others, reaffirming their confidence in themselves, letting them know that you love them, and sharing laughter.”

In addition to making psychological adjustments, people mentioned even more frequently adapting to their illness by reducing their activity level and avoiding stress. Themes here included the idea of pacing, spending more time resting, and listening to the body. Several people mentioned that adapting to the illness offered them a way to regain control in their life. One said: “I learned that I could gain some control over the illness. Many of the symptoms I experienced were caused or intensified by my activity level and stress, so I found I could reduce symptoms by controlling my activity level and by reducing stress.” Another said: “The more I learned, the more I realized I had to start thinking in a new way This realization was the first step in accepting that my life had changed but I could gain control over my quality of life, AND I could still be happy.”

Living within limits does not mean going without pleasure. Several people mentioned the importance of having enjoyable activities in life, including things to look forward to.

3) Get Support

Long-term illness can be isolating and demoralizing. Most respondents emphasized the importance of getting support from a variety of sources. One advised: “Seek support via a health practitioner, a group, a trusted person, and perhaps a (grief) counsellor.”

About half mentioned the support offered by knowing other patients. Support can mean knowing that you are not alone and it can also can provide discipline for change. As one person stated: “Through that support I learned to define my Energy Envelope and make conscious attempts to stay within it. I tried different strategies and learned from those things that weren't successful.”

A few people mentioned that not all contact with fellow patients is supportive. Some support groups may be negative, reinforcing a sense of helplessness.

Quite a few people mentioned that having a knowledgeable and sympathetic doctor was a great source of support. Some also noted that counselors, especially those who specialize in working with people who have chronic illness, can be helpful.

Comparison to Earlier Answers

Responses this time were generally similar to those the last time we queried participants in our program. Educating yourself about your illness was mentioned by many people in both surveys. Responses advising adapting to illness were even more common last time, breaking into two ideas: accepting illness as a real, long-term challenge, and adjusting activity level to live within the limits imposed by illness. Support was mentioned frequently both times.

The major differences between the answers the first time we asked and those the second time were that more people this time suggested the value of patients educating themselves and more mentioned the usefulness of good medical care.

Summary

Members of our groups think that the foundation for coping well with CFIDS and fibromyalgia lies in a combination of three factors: a) educating yourself about your illness, which includes experimenting to find what works in your individual situation; b) adapting to the illness by accepting its long-term nature and adjusting your life to live within the limits imposed by illnesses; and c) having supportive relationships with fellow patients, family and friends, and health care professionals.