If you have CFS or FM, it is likely that many relationships will be redefined and some will end. One response is to make this transition a conscious and deliberate process by using relationship triage.

 

You might think of your relationships as a series of concentric rings. In this scheme, the inner ring contains the most important people in your life, typically family and closest friends. People on the outer ring are casual acquaintances. In between there may be one or two other rings of people with varying levels of importance. You may develop different approaches to people in various rings, concentrating on those in the inner ring.

 

The general idea is to concentrate on the more valuable or necessary relationships. In the words of Dr. David Spiegel of Stanford: “Save your energy and use the illness as an excuse to disengage from unwanted social obligations. Simplify the relationships that are necessary but unrewarding, and eliminate the ones that are unnecessary and unrewarding.”

 

You may be able to preserve some relationships by adapting how you socialize. For example, if you have severe limits and cannot often get out of the house, you may be able to stay in touch with people using phone calls and emails, plus having people make occasional visits.

 

Another adaptation is to limit the length of socializing, for example by limiting how long you talk on the phone or the amount of time you spend face-to-face with others. A third adaptation is to alter the settings in which you socialize. You may be able to tolerate time in a restaurant if you go either before or after the busiest hours.

 

Other adjustments include limiting the number of people you socialize with (for example, two or three at a time rather than larger groups) and taking rest breaks. One woman with a large family told her married adult children that she would not host more than one couple and their kids at a time.

One step toward easing strains in your relationships is to acknowledge that your illness creates problems for others. Your symptoms and moods, for example, may make you unpredictable, and your limits may force others to take on additional responsibilities. 

Express your appreciation for their efforts. Acknowledge that the illness can make you unreliable. Out of respect for other people, warn them that you might have to cancel on short notice. To help maintain the relationship, tell them that you value them and that canceling a get together does not mean you don’t like them.

 

Take responsibility for the problems your illness creates for others. For example, if your illness makes you moody, make a list of things you can do to help yourself feel better so that you avoid inflicting your negative moods on others. For example, when you are feeling irritable, you might listen to music, take a walk or have a brief rest. 

As one person said, “I remind myself that relationships are voluntary and I ask myself what I can do so that other people will want to continue our relationship.”

 

Because of guilt or pressure from others, you may do more than your body can tolerate. A solution is the combination of changing your expectations and being more assertive. Changing expectations is a gradual process by which you come to accept that you have limits and need to adapt to a “new normal.”

 

Learning assertiveness can also be a gradual process, as you educate others about your limits. Here are four ideas to consider. First, be very specific in the requests you make or limits you set. For example, tell a caller "I have enough energy to talk for 20 minutes." Second, show that you understand the other person’s situation. You might say something like, “I know my illness makes your life more difficult and that some things I say and do may be frustrating.” 

Third, preface your request with a statement of appreciation, such as “I appreciate all you do for me.” Fourth, if you find it difficult to be assertive, practice saying your request to yourself or someone you trust before making it to the person whose help you want.

 

Perhaps the most common relationship frustration among people with CFS and FM is not feeling understood. In our experience, attempts to educate others often require patience and are often (but not always) successful.

 

A woman in the self-help program was successful in educating her family using a pamphlet about CFS from the CFIDS Association of America. One year, she gave a brochure to her husband and adult children, asking that they read it as their birthday present to her. Over a period of about a year, her family members came to accept her CFS. 

(The brochure was “For Those Who Care” and is available from the CFIDS Association of America: www.cfids.org. The Arthritis Foundation has a similar brochure for fibromyalgia. You can find similar materials in the Family and Friends section of the self-help program website.)

 

Most people with CFS and FM eventually put limits on their efforts to educate others, focusing on the relationships that are most important and recognizing that some people may never understand or be sympathetic.

 

Other people often feel helpless about our illness. By giving them something specific to do, you can do them a service while helping yourself. As one person in our program said, “People are often thrilled when I ask for help in clear, practical ways.” A caution: asking too much of others in total or of one person in particular can risk caregiver burnout.

 

Helping others aids self-esteem and also gives others an incentive to stay in the relationship. As a person in the self-help program said, “I ask myself what I am doing to make a relationship valuable to the other person.”

 

A final strategy for responding to limits and the loss of relationships is to embrace solitude. Serious illness often forces people to spend much more time alone than before. Solitude can provide an opportunity to develop new solitary interests. 

Some patients, recognizing that they will be spending less time with people, have seen the situation as a chance to do things like reading and art work that they didn’t have enough time for earlier in their lives. For more on this topic, see the article In Praise of Solitude.