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Serious illness creates stresses for most relationships. Relations with family, friends, coworkers and bosses, and even doctors are altered in ways that create new challenges for both people with CFS or FM and for those around them. People with CFS and FM experience many frustrations in their relationships.

• Feeling Not Understood: Other people may not believe you are ill or may not understand the seriousness of your condition.
   
• Loss of Relationships: Limitations and unpredictability of symptoms can make it difficult to maintain relationships. Some relationships may be lost, while others are redefined.
   
• Guilt: You may blame yourself for getting sick or for not contributing to family or society.
   
• Feeling Undependable: Unpredictability of symptoms often leads to cancelling out of commitments, creating misunderstanding and threatening some relationships.
   
• Isolation: You may feel a sense of isolation, either because of spending more time alone or because of feeling different from other people.
   
• Fears of Dependency & Abandonment: You may worry about losing your ability to care for yourself or fear that others upon whom you depend will leave you.

This chapter describes eight general strategies for improving relationships. Other chapters in this section focus on recasting family relationships, improving how couples work together, building a support network and working productively with doctors.

Assess & Triage

If you have CFS or FM, it is likely that many relationships will be redefined and some will end. You can make this transition a conscious and deliberate process by using relationship triage: making explicit decisions about whom to include in your support network.

One place to start your evaluation might be with the fact that CFS and fibromyalgia may make you feel more vulnerable to those who are negative or demanding. The cost of spending time with such people may be great enough to convince you that some relationships are not worth maintaining. You may decide to keep others and still others you may consider essential.

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 and letting others go. 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."

Change How You Socialize

You may be able to preserve a good number of relationships by changing 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 visit you.

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. For example, 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 and taking rest breaks. One woman with a large family told her adult children that she would not host more than one couple (and their children) at a time.

Do Your Part

CFS and FM alter the financial situations of many families, often force radical changes in how household tasks are divided up and reduce the number and scope of activities that families can do together. Just like you, your family members can feel isolated and helpless.

They may experience loss because their dreams are put on hold. They may feel abandoned or frustrated by the restrictions on their lives. The unpredictability of symptoms can lead to others viewing you as undependable and mood swings can affect others as well.

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 moods on others. When you are feeling irritable, you might listen to music, take a walk or have a brief rest.

Change Expectations and Use Assertiveness

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 for yourself and being more assertive. Changing expectations is a gradual process by which you come to accept your limits and the need to adapt to a "new normal." For more, see Chapter 26.

Learning assertiveness can also be a gradual process, as you educate others about your limits. One part of assertiveness is to be very specific in the requests you make or limits you set. For example, say "Will you pick up bread and milk at the grocery store" or "I'd be glad to talk with you, but I'll only be good for 15 minutes."

One person in our program communicates her envelope for the day to her family using a 1 to 10 scale. In her system, a 1 means "like I felt before I got sick" and 10 means "have to stay in bed all day." When asked to do something, she may respond by saying, "No, I can't do that; it's a 7 day."

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 requests 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.

Educate Others (Selectively)

Perhaps the most common relationship frustration among people with CFS and FM is not feeling understood and not being believed when we say we are ill. One response is to make efforts to educate others about CFS and FM.

If you think educating others about your condition would make them more understanding or supportive, you might talk with them or give them something to read, for example articles in the Family and Friends section of our website.

A woman in our program was successful with a clever approach to sharing the CFIDS Association pamphlet. She gave copies to her husband and adult children, asking that they read it as their birthday present to her one year. Although the process took a full year, one by one her family members came to accept her CFS.

People report that educating others about CFS and FM often requires patience and is not always successful. Most who try 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. One person reported that over time he has reduced his time talking to others about CFS, saying, "I still make efforts to educate, but I'm more selective about who I approach."

Your situation is different if you have school aged children. If they know you are sick, but don't understand your illness, they may fear that you will die or they may blame themselves for your suffering. By discussing your condition with them, they can replace fears with facts.

Consider using the four guidelines offered by Dr. Julie Silver: 1) tell your children the name of your condition; 2) explain something about the illness (for example, that it is not thought to be contagious and not anyone's fault); 3) describe the expected course of the illness (that it is likely to continue, but will be manageable); and 4) outline its effects and reassure them of your commitment to them (that you still love them despite being ill, and will do what you can, even though your activity level may be limited by the illness).

Build New Sources of Support

Creating new relationships can be a powerful antidote to frustration in relationships and can also counteract some of the losses and the isolation brought by illness. One good place to meet new friends is through support groups. (For ideas on locating a support group, see the chapter "Building a Support Network.") Similar experiences are available now on the Internet, at online chat rooms and message boards.

In thinking about how to meet your practical and emotional needs, consider putting together a group of people who can help. Some may offer practical help, such as grocery shopping, housecleaning or driving. Others may be companions for outings, such as a visit to a restaurant or a night at the movies.

Still others may offer emotional support, by listening and offering reassurance. In any case, it's wise to have several people to fill these various needs, so that one or two people don't feel overburdened and burn out.

Professional support may be helpful as well. A sympathetic therapist can provide support and offer an outsider's view of your situation. If you're interested, you might look for one who specializes in working with people who have chronic illness. A local support group is often a good source of leads. Therapy can also be helpful for couples, offering a place in which the strains created by living with long-term illness can be addressed.

Accept Help and Help Others

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. As one of our group leaders said, "Being a moderator helped me feel useful even when I was very ill and unable to accomplish much in the outside world." Doing things for others also gives others an incentive to stay in the relationship. As someone in our groups said, "I ask myself what I am doing to make a relationship valuable to the other person."

Embrace Solitude

Serious illness often forces people to spend much more time alone than before. A final strategy for responding to limits and the loss of relationships is to embrace solitude. 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. See, for example, JoWynn Johns' article "In Praise of Solitude."
 

References

CFIDS and Fibromyalgia Self-Help website. The Family and Friends archive is in the Library section. The article on solitude is in the Coping Strategies archive of the Library.

Silver, Julie. "Chronic Pain in the Family," Fibromyalgia Aware: May 2005: 40-42.

Spiegel, David. Living Beyond Limits. New York: Times Books, 1993.