The CFIDS & Fibromyalgia Self-Help Book

Chapter 12: Improving Support

Chronic illness creates stresses for most relationships. Relations with family, friends, coworkers and bosses, and even doctors are altered in ways that suggest that the area of relationships is another in which the limits imposed by illness can create new challenges both for us as patients and for those around us.

As patients, we deal with the frustration of having invisible illnesses that are often not accepted or understood. We may have trouble convincing others that we have a serious illness. We often hear “but you look so well,” and sometimes comments like “just pull yourself together and snap out of it.” We may be on the receiving end of well meaning but unsolicited advice.

The limits imposed on us by our illness create problems for others, both family members and friends. The unpredictability of symptoms can make daily life difficult for those around us. Because we have less energy, we may not be able to do as much as before and other family members may have to take on additional responsibilities. Both we and other members of the family may have difficulty adjusting expectations to fit our new limits. Others may feel resentment at their new burdens, while we may feel guilty about not doing our share.

While our grief may be most evident, there are losses for family members as well. They may lose some of the companionship we provided when healthy. Also, our illness may affect the dreams and hopes of those around us, as they are forced by our illness to alter their plans.

Limits and the unpredictability of symptoms can make it difficult to maintain existing relationships outside the family. It is harder to get together with people. We may be unable to socialize in ways we used to. We find it difficult to make or keep commitments, sometimes having to cancel at the last minute. Energy limits, in combination with worries about being accepted, can discourage us from the effort to establish new relationships.

Our limits can feed fears about being abandoned. When we don’t have our former energy, we may fear that we will lose the ability to take care of ourselves. We may also fear being abandoned by those we depend on.

Feeling sick and being dependent makes it much more difficult to be assertive than it might be otherwise. Sometimes we adopt others’ expectations for ourselves as our own and make our situation more difficult by pushing ourselves too far. Guilt over not being as active as we would like or as others think we should be, can lead to our doing too much.

Here are eight strategies you might consider using in response to these frustrations.

Being ill means we have less energy for relationships, making it likely that some relationships will end or be put on hold. This is one more example of how the limits imposed by illness force us to be selective in what we do.

One place to start your evaluation might be with the fact that CFIDS and fibromyalgia can 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. Others you may decide to keep and still others you may consider essential. In our program, we refer to this conscious and deliberate approach as relationship triage: making explicit decisions about who to include in your support network, concentrating on the more valuable or necessary relations and letting others go.

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. Relationships on the outer rings may be easier to let go of.

The approach being suggested is summarized by Dr. David Spiegel of Stanford, who writes about relationships and chronic illness as follows: “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.”

Here are some examples of relationship triage from people in our program.

I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.

I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.

Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can’t continue to put my previous energy into it. When the person is family, I’ve learned to back away as much as I can, but it may not be an option to completely cut them off.

Work hard to nurture those relationships that are most important to you. Focus especially on the relationship with your spouse or partner. Research suggests that relationships are more stable if there is an emphasis on the positive, so look for the good in one another and in the relationship. A study that charted the amount of time couples spent fighting versus interacting positively (touching, smiling, paying compliments, laughing, etc.) found that relations were stable and satisfying if the ratio of positive interaction to negative was 5 to 1.

Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. Here are some suggestions for achieving good communication.

A healing approach to relationships can begin with our acknowledging to ourselves and then to others how our illness and behavior affects those around us. Serious illness alters dramatically the financial circumstances of most families, forces radical changes in how household tasks are divided up, and drastically reduces the number and scope of activities the family can do together.

Just like patients, family members too can feel isolated and helpless. They may experience loss because their dreams, too, are put on hold. And they may feel abandoned or feel frustrated at the restrictions on their lives. The unpredictably of symptoms and mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion. Working to improve communication can help to increase understanding among all those involved, can help uncover unrealistic expectations, and aid cooperative problem solving.

Acknowledge that your illness creates problems for others, for example having 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 backing out 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. When you are feeling irritable, you might listen to music, take a walk or have a brief rest. All can help you avoid inflicting your moods on others.

I try to be the best friend, spouse, daughter and sister I can be. I feel more secure and on equal ground when I feel I’m keeping up my side of a relationship. I can’t do this with everyone, so I focus on the most healthy, valuable relationships.

I make time for my marriage. I’ve found that even if I’m too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.

I have found that identifying my part in miscom-munication or a problem is very helpful.

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.

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.

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 CFIDS/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.

Contact with fellow patients counteracts isolation and provides an experience of being acknowledged and supported. Such contact can be a way to experience feeling understood, comforted and inspired. Also, groups can provide information, such as names of local doctors who treat CFIDS and fibromyalgia. Groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from illness. And, finally, 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 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.) 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 CFIDS and fibromyalgia include our Internet course (www.cfidsselfhelp.org) and the in-person Arthritis Self-Help Course offered by the Arthritis Foundation. The latter includes material for fibromyalgia patients.

Not all efforts at support are successful. 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.

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.

Psychotherapy helps some people with CFIDS and fibromyalgia. A sympathetic therapist can provide a confidant’s level of caring, offering an outsider’s view and providing continuity. 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 explored.

Patients are sometimes successful in educating others about their illness, but most put limits on their efforts. If you think educating others about your illness would help them to be more understanding and supportive, you might talk with them or give them something to read. The CFIDS Association of America has a brochure titled For Those Who Care, which is available from them and also can be downloaded from their web site: www.cfids.org. The Arthritis Foundation has a similar brochure for fibromyalgia. One person in our groups who gave the CFIDS pamphlet to her husband and children asked that they read the pamphlet as their birthday present to her.

Patients who have tried educating people in their lives report that this approach often requires patience and is not always successful. They have experienced positive responses at times, but have also concluded that some people may never understand the illness or be sympathetic. One student said, “When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I’m more selective about who I approach and I’ve accepted that some may never understand.”

Set Limits

Assertiveness means setting safe limits for oneself, then communicating them to others. Make clear to yourself and to others the consequences of your trying to meet old expectations: intensification of symptoms and postponed improvement. Be as specific as possible in asking for help if others offer assistance. For example, you might ask if they would do grocery shopping, make a phone call, or drive you to a medical appointment.

It can be difficult to be assertive if you feel dependent or fear abandonment. If that’s the case for you, it may help to practice saying your request to yourself or someone you trust before making it to the person whose help you want. In presenting your request, it may help to acknowledge 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.”

One student in our groups was able to communicate her limits to her family using a 1 to 10 scale. In her system, a 1 meant “as good as I used to be before I got sick” and 10 means having to stay in bed all day. If her family asks her to do something or to go somewhere, she may respond by saying “No, I can’t; it’s a 7 day.” She has found this practice both helped her family understand her situation and helped her learn pacing.

Setting boundaries and keeping them set are big challenges for me. For years I have had ‘welcome’ tattooed on my forehead, as if I were a doormat.

When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today’ or ‘I am not up to doing that at this time’ and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.

Other people often feel helpless about our illness. By giving them something specific to do, you can do them a service while helping yourself. But there are some dangers as well. If you receive more support than you need, the help may reinforce a sense of helplessness. Also, asking too much of one person can lead to resentment and caregiver burnout.

People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on people.

Serious illness often forces people to spend much more time alone than before. While some find solitude frightening or boring, others see their illness as providing an opportunity to develop new solitary interests. Recognizing that they will be spending less time with people than before, they 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, which is posted at our site. Two students in our program had this to say about having more time alone because of illness.

I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.

I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.

Gottman, John. Why Marriages Succeed or Fail. New York: Simon & Shuster, 1994.

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