Meeting the Challenges of Long-Term Illness

Building a Support Network

By Bruce Campbell

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 family and other non-patients. Creating new relationships, especially with fellow patients or others who are empathetic, can be a powerful antidote to frustration in relationships. It is very healing to feel understood. Also, talking about your illness to friends avoids overburdening your family. And having friends with the same illness may give you the opportunity to help others, which can boost your self-esteem.

Your Support Network

In thinking about how to meet your practical and emotional needs, consider putting together a network of people who can help. Author Devin Starlanyl suggests that such a network contain at least five people. Some may offer practical help, such as grocery shopping, housecleaning or driving. Others may be companions for outings such as a visit to the coffee shop 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 person does not feel overburdened and burn-out.

A Confidant

It can be especially helpful to have a confidant, one person to whom you can turn for emotional support and an objective view of your life. That person could be your spouse, a good friend or perhaps a fellow patient. I was fortunate to have such a friend. We set aside some time at the first of each month to discuss how I was doing. We each assessed my status using the CFS/Fibromyalgia Rating Scale, then reviewed my logs for the previous month. I learned much from the discussions, recognizing patterns I wasn’t able to spot on my own. Just as important, the meetings communicated that I was not struggling alone with my illness, but rather that there was somebody who cared  about me and wanted to help me get better. And she said the sessions helped her to feel useful, counteracting the sense of helplessness often experienced by people close to those who are seriously ill.

Support Groups & Classes

Support groups and self-help classes can be a good way to meet fellow patients. The experience of being in such groups can be helpful in a number of ways. Chronic illnesses, especially ones that are hidden and often stigmatized, are isolating. Contact with fellow patients can counteract isolation and provide an experience of being acknowledged and supported.  Such contact can be a way to experience feeling understood, comforted and inspired. Groups can provide information, such as names of local doctors who treat CFS and fibromyalgia.

Also, groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from illness. And they can offer models of successful coping with illness, thus dispelling fear. Similar experiences are available now on the Internet, at online chat rooms and message boards.

The CFIDS Association of America maintains a state-by-state list of CFS 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.) The Arthritis Foundation sponsors fibromyalgia support groups in many places and offers an online directory of their groups at their website: www.arthritis.org. 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 includes material for fibromyalgia patients. For other support resources, see the article "Finding Support Groups and Doctors."

Not all efforts at support are successful. Some groups are negative in tone, reinforcing a sense of victimhood. Some, often the same groups, are dominated by one or a few people. Others focus on responding positively to illness and insure participation from all members who wish to speak.

I suggest you evaluate such experiences based on the effects they have on you. Contact with fellow patients, especially in a group, can be very powerful. When such contact is negative, it can reinforce isolation and a sense of victimhood. But in a supportive atmosphere, it can be helpful and even healing. Contact with other patients may leave you feeling upset at times, but the discomfort should be followed by a new perspective on your situation, and increased confidence about your ability to manage the illness. A good group is one in which you feel a sense of belonging, which gives you something positive to take home, either inspiration or practical tips, and which offers models of living successfully with illness.

Professional Support 

Some people with CFS and fibromyalgia report being helped by counseling. A sympathetic therapist can provide a confidant’s level of caring and offer an outsider’s view as well. 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.

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