Note: This article is reproduced with Dr. Campbell’s kind permission from his CFIDS & Fibromyalgia Self-Help website.
(This article is first in Dr. Campbell’s series Recasting Relationships and Building Support.)
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.
This article describes eight general strategies for improving relationships if you have CFS or FM. Other articles in this series focus on recasting family relationships, improving how couples work together, finding new sources of support and working productively with doctors.
1. Assess & Triage
If you have CFS or FM, it likely that many relationships will be redefined and some will end. We suggest you 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.”
2. Adapt How You Socialize
You may be able to preserve a good number of 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 them 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 and taking rest breaks. One woman with a large family told her adult children that she would not host more than one couple at a time.
3. Do Your Part
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.
4. 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 and being more assertive. Changing expectations is a gradual process by which we come to accept that we have limits and need to adapt to a “new normal.” For more, see articles on coming to terms with loss in the Emotions archive.
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. 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.
5. 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. People in our program report that attempts to educate others often require patience and are not always successful.
A woman in our program was successful with a clever approach. She gave a pamphlet about CFS to her husband and adult children, asking that they read it as their birthday present to her one year. Although it took about a year, one by one her family members came to accept her CFS.
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.
6. 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 article “Finding Support Groups and Doctors.”) 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 helps some people with CFS and fibromyalgia. 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. It can offer a place in which the strains created by living with long-term illness can be addressed.
7. 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 to 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 someone in our groups said, “I ask myself what I am doing to make a relationship valuable to the other person.”
8. Embrace Solitude
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. See, for example, JoWynn Johns’ article “In Praise of Solitude.”
Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.