Step 1: Educate Yourself

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By Bruce Campbell

As a person with a long-term illness, you have to learn how to manage a condition that doesn't go away. One of your tasks as a self-manager is to gather information, learning as much as you can about your condition and the treatment options available to you, so that you can make informed, intelligent decisions.

This is the first step in your self-management program: to educate yourself.

If you're fortunate, your doctor will be knowledgeable about your condition and you will learn a lot from discussions with her. Also, since you're already here, you might search our site, which contains several hundred articles. 

Let me suggest some guidelines for educating yourself. First, use multiple sources. No one person or organization has a monopoly on helpful ideas about ME/CFS and FM. You can counteract the partial perspective of any one source by considering the ideas of many.

Second, ask whether the claims you hear are credible. Some people prey on the desperation of patients, so be skeptical of those who promise recovery, particularly if those promises come with a big price tag.

Most reliable authorities believe that so far no cure has been developed for either condition. Be willing to experiment, but ask what risks are associated with a treatment and whether the likely gains are consistent with the cost.

Third, view education as an ongoing task, but put limits on your inquiry. New developments occur from time to time, but breakthroughs are rare. After an initial intense period of educating yourself, you can probably keep up with new ideas by reading to one or two newsletters or magazines.
 

Support Groups

The patients you meet in support groups can be a good source of information. They may point you to doctors who treat ME/CFS and fibromyalgia. Also, fellow patients can offer models of successful coping with illness. People who are living well with your condition can both teach you practical strategies and offer inspiration.

Today, such support is not limited to in-person meetings. Similar experiences are available on the Internet, through online chat rooms and message boards.

Support groups are a mixed bag and not all are helpful. Some are negative in tone or may be dominated by one or two people.

Look for a group that gives you a sense of belonging, encourages balanced participation from many group members, offers you something positive to take home, and provides models of living successfully with illness. To find support groups, see this article.
 

You (Self-Observation)

You are a source of information about your illness, perhaps the most important one. You live with your condition on a day-to-day basis and know it intimately. You can increase your sense of control by deepening your understanding of how ME/CFS or fibromyalgia affects you.

You are probably aware of a number of things that intensify your symptoms. Factors often mentioned in our groups include doing too much, poor sleep, travel, financial problems, stressful relationships, worries about the future, food or chemical allergies, light or sound (sensory overload), too much time with other people, and family or other responsibilities.

You probably are also aware of things that help you feel better. When we ask people in our groups what helps them and gives them a sense of control, they often respond with answers like the following: accepting my limits, pacing myself, taking regular rests each day, getting support from other patients, using medications to control symptoms, changing my diet, asking others for help, avoiding people and situations that trigger symptoms, turning inward (spirituality), laughter and other pleasurable activities, and practicing relaxation and stress reduction.

Whether you keep records using health logs or have a less formal system of self-observation, you can use your insights about your life to increase your control. The key is to try experiments.

For example, one person in our program cut her rest time in half without increasing her symptoms by taking several short rests each day rather than two long ones. Others have found they can accomplish more if they are sensitive to when they are active; they get twice as much done during their good hours each day.