Building a Support Network

By Bruce Campbell

(From the series Recasting Relationships and Building Support.)

Whether you live with family or on your own, having a support network is one of the key ingredients to living well with a long-term illness.

Support can take many forms. One is practical help, such as grocery shopping, housecleaning or driving. A second type is companionship for activities, such as someone to go to a movie with. A third type is acceptance, feeling believed when you say you are ill. And a final type is understanding, the sense that others know what you are going through.

Family relations can meet support needs in varying degrees, but usually do not provide people with all the support they would like.

Connecting with people beyond the family opens up new opportunities while reducing the burden on those closest at hand. If you live on your own, building a support network is all the more crucial.

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. Others may help you meet your needs for socializing. Still others may offer emotional support by listening and offering reassurance or insight. 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 Coach

It can be especially helpful to have 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, someone else with ME/CFS or FM or a counselor.

People in our program have said that their spouse often functions in this way: reminding them of their limits, encouraging them when they are feeling down and suggesting new strategies they can try. In her book Defeat Chronic Fatigue Syndrome, Martha Kilcoyne describes her husband that way, calling him her "personal advocate."

Support Groups & Classes

Support from other people who have ME/CFS or FM can be crucial. Contact with fellow patients can counteract isolation and provide an experience of being acknowledged and supported.

Such contact can be a way to feel understood, comforted and inspired. Many people taking our classes say things like "it's so nice to know I'm not alone."

Support groups and classes such as ours are one way to meet fellow patients. In addition to connecting with others who have ME/CFS or FM, support groups can provide information, such as names of local doctors who treat ME/CFS and fibromyalgia.

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

While support groups can be 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. Others focus on responding positively to illness and insure participation from all members who wish to speak.

We suggest you evaluate support groups based on the effects they have on you. A helpful 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.

Contact with fellow patients in a group setting can be very powerful and may leave you feeling upset at times. When such contact is negative, it can reinforce isolation and powerlessness. In a supportive group, however, the discomfort should be followed by a new perspective on your situation and increased confidence about your ability to manage the illness.

For ideas on how to locate support groups, see the article Finding Support Groups and Doctors.

Role Models

Another type of support is that provided by people who have adapted to having ME/CFS or FM and who have improved. You may find such models in a support group.

In my case, two powerful models were people I never met, but knew through their writings. They provided me with models of living successfully with ME/CFS. As such, they were sources of inspiration and hope.

The first was Dean Anderson, who described his successful eight-year struggle to recover from ME/CFS in the article “Acceptance, Discipline and Hope,” which we have posted in our Success Stories archive.

I was inspired by the article the first time I read it and I returned to it often for encouragement and practical strategies. His improvement was a symbol of hope to me.

The other ME/CFS patient who influenced and inspired me was JoWynn Johns. She was effectively housebound at the time she wrote her article "Living Within My Envelope" (also a Success Story) but, following an approach similar to mine, she had greatly reduced her symptoms. Her experience, too, gave me hope.

Professional Support

Another kind of support is the professional help offered by counselors and psychotherapists. A sympathetic therapist can offer encourage- ment, provide an outsider's view of your situation and give you continuity.

If you're interested, you might look for one who specializes in working with people who have chronic illness. A 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 explored and solutions worked out.