Step 8: Build Support

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By Bruce Campbell

Long-term illness creates stresses in most relationships. In the family, illness strains finances, changes how household responsibilities are divided up, and reduces the number of activities families can do together. In addition to creating relationship stress, serious illness is also isolating, creating a need for new sources of support. In step 8 of your self-management plan, you respond to these developments, both by making changes to your existing relationships and by creating new sources of support.
 

Improving Relationships

Illnesses like CFS and fibromyalgia bring great stress and uncertainty for all members of the family, not just for the person who is ill. Like patients, family members, too, can feel isolated and helpless. They may experience loss, because, like you, their dreams may be on hold. And they may feel abandoned or feel frustrated at the restrictions on their lives. Our unpredictability and changes of mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion.

The limits brought by illness force changes in how the household is run. If you live in a family, your limits will probably mean that you can't do all that you used to do. Often, this results in others having to take on new responsibilities. If you're not able to do everything you did previously, I suggest you think in terms of delegating, simplifying and eliminating. Delegating means finding someone else to do a task you used to do. For example, family members may share in meal preparation or grocery shopping, or you might hire someone to clean. Simplifying means continuing to do something, but in a less elaborate way. For example, you might clean house less often or cook less elaborate meals. Lastly, you may decide that some things don't need to be done and eliminate them.

If you live alone, you may need outside help to accomplish the tasks of daily life or will have to reduce the number of tasks you do. In thinking about how to meet your practical and emotional needs, consider putting together a group of at least five 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.

The limits imposed by illness often mean that you cannot keep up all the relationships you had in the past or to maintain your relationships in the same way. I suggest you respond by practicing relationship triage, making explicit decisions about whom to include in your friendship network, concentrating on the more valuable or necessary relationships and reducing or eliminating those that are unrewarding and unnecessary. For example, you may decide that the cost of spending time with people who are negative or demanding is great enough that you limit the time you spend with some people and eliminate other relationships entirely.

One step toward easing strains in your relationships is to acknowledge that your illness creates problems for others. Fluctuations in your symptoms and moods, for example, may make you unpredictable, and your limits may force others to take on additional responsibilities. You can avoid conflict by expressing your appreciation for others' efforts and by acknowledging 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. You can also smooth your relationships by taking 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.
 

Finding New Sources of Support

Because being ill is so difficult, feeling understood and supported is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by others as well. Creating new relationships, especially with fellow patients or others who are empathetic, can be a powerful antidote to frustration in relationships. Also, talking about your illness to friends avoids overburdening your family.

Contact with fellow CFS and fibromyalgia patients can counteract isolation and provide an experience of feeling understood, comforted and inspired. One way to do this is by joining a support group. Groups also offer a way to be helpful, thus counteracting the loss of self-esteem caused by having to give up previous roles. And, groups can offer models of successful coping with illness, thus providing inspiration and hope.

While support groups may be very helpful, not all provide a positive experience. Some groups are negative in tone, reinforcing a sense of victimhood. Some groups are dominated by one or a few people. Other groups, however, focus on responding positively to illness and insure participation from all members who wish to speak. Seek out a group that gives you a sense of belonging, that provides something positive to take home, and that offers models of living successfully with illness.

The CFIDS Association of America maintains a state-by-state list of CFIDS support groups in the United States. They will mail a list of groups in your state at no cost. You can contact them at 800/442-3437 or email your request to SupportGroups@cfids.org. The Arthritis Foundation sponsors fibromyalgia support groups in many places and offers an online directory of their groups at their website: www.arthritis.org. For other lists of fibromyalgia support groups, see the website of Immune Support (www.immunesupport.com/supportgroups/) and the site for the National Fibromyalgia Association (www.fmaware.org). You may also be able to find support groups listed in your local newspaper or locate them through the patient education departments at hospitals, clinics and medical centers.

Self-help classes for people with CFS and fibromyalgia include our Internet course and the in-person Arthritis Self-Help course offered by the Arthritis Foundation. The latter course includes material for fibromyalgia patients.

You might also consider using professional help in coping with your condition. A sympathetic therapist can provide a confidant's level of caring 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. Therapy can also be helpful for couples, offering a place in which the strains created by living with long-term illness can be addressed. A local support group is often a good source of leads.