15: Improving Relationships and Building Support

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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 for both patients and those around them.

The discussion in this chapter outlines eight common relationship frustrations faced by people with CFS and fibromyalgia and suggests strategies for dealing with them.

Frustrations and Solutions

Not Feeling Understood

Perhaps the most common relationship frustration is not feeling understood and not being believed when we say we are ill. Since CFS and fibromyalgia are invisible illnesses, we sometimes have trouble convincing others that we are sick and, in fact, have a serious illness.

Some people may respond to us with statements like, "But you look so well" or "I get tired, too." We may be on the receiving end of well meaning, but unsolicited, advice. In sum, getting others to understand and accept our situation can be a major challenge.

Part of not feeling understood may be due to poor communication. For ideas about dealing with this frustration, see the section titled "Improving Communication" later in this chapter.

In addition to working on better communication, I suggest you consider using different strategies with different people. Some people you deal with may not need to understand your medical situation. For example, if you want to use a scooter at the grocery store, it is probably sufficient just to ask whether one is available, without explaining your medical condition.

If someone calls to ask you to volunteer, it may be enough to say that your situation does not permit you to help out at this time.

Friends are in a different category. CFS and FM patients are sometimes successful in educating others about their illness, but most put limits on their efforts. If you think talking to others about your illness would help them to be more understanding and supportive, you might discuss it with them or give them something to read, such as the articles in our Family & Friends archive.

Patients who have tried educating the 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 or be sympathetic.

As one person in our program said, "When I was first ill, I tried to educate everyone about CFS. 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 whom I approach and I've accepted that some may never understand."

The situation is different with medical providers. It is reasonable to expect that your doctors believe your illness is real, know about your illness or show a willingness to learn about it, and treat you with respect. For suggestions on how to find understanding and sympathetic medical care, see Chapter 5.

In terms of family, I would suggest you think of overcoming any lack of understanding as a long-term project. Some people in our groups have said that they have been more sympathetic toward other people's difficulties after asking themselves how they would have understood CFS or FM before they had it.

Just as we need time to understand and adapt to our illness, so too others need time to comprehend what we are going through and to figure out the implications for their lives.

One person in our program who wanted to educate her husband and children about CFS gave a pamphlet mentioned to her husband and adult children, asking that they read it as their birthday present to her. She reported that, one by one, they developed an understanding of her illness and limits, but that the process took a couple of years to complete.

Your situation is different if you have school aged children. If they know you are sick, but don't understand your illness, they may fear that you will die or they may blame themselves for your suffering. By discussing your condition with them, they can replace fears with facts. Consider using the four guidelines offered by Dr. Julie Silver.

She suggests that you: 1) tell your children the name of your condition; 2) explain something about the illness (for example, that it is not contagious and not anyone's fault); 3) describe the expected course of the illness (that it is likely to continue, but will be manageable); and 4) outline its effects and reassure them of your commitment to them (that you still love them despite being ill, and will do what you can, even though your activity level may be limited by the illness).

A final strategy for reducing frustration from not feeling understood is to create new sources of support in your life, including from fellow patients. See the section at the end of the chapter called "Building Support."

Pressure to Do Too Much

Because of a lack of understanding or for other reasons, others may pressure us to do more than our bodies can tolerate. Feeling sick and being dependent makes it much more difficult to be assertive. 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 and others would like can feed into our doing too much.

Pressure to do more than is healthy can be addressed both through changing our expectations for ourselves and by being assertive with others. Often we impose unrealistic expectations on ourselves. An approach to overcoming this difficulty is to define our limits, as described in the chapter on the energy envelope, and then to gradually learn to live within them, as outlined in the chapter on pacing.

The adaptations are both mental and physical. As described in the section "Mental Adjustments" in Chapter 13, we need to redefine our expectations for ourselves, adapting them to our new limits. Also, we can profit by making activity adjustments as described in Chapter 10. These changes may include using short activity periods, spreading activity through the week, and integrating rest into our lives.

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. Here are other thoughts about limit setting from people in our program.

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.

The Loss of Relationships

With serious illness, you have less energy for everything, including relationships. This basic fact about CFS and fibromyalgia makes it likely that some relationships will change or even end. This is one more example of how the limits imposed by illness force us to be selective in what we do and to set priorities.

I suggest that, in the face of limits, you practice relationship triage: a conscious and deliberate process of making explicit decisions about whom to include in your support network, concentrating on the more valuable or necessary relations and letting others go.

One place to start your evaluation of your support network might be with the fact that CFS 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 relationships with some people should be limited and relations with others are not worth maintaining.

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.

During a time of loss, it is especially useful to create new relationships, especially with people who understand what you are going through. Getting to know fellow patients can be especially helpful. For ideas about creating new relationships and strengthening old ones, see the section titled "Building Support" later in this chapter.

Another 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. While some find solitude frightening or boring, illness 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, posted elsewhere on this website.

Two other people 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.

Feeling Undependable

Unpredictability can create relationship problems, as we may not feel confident about making commitments or may be forced to cancel out of engagements, often at the last moment. Being undependable because of the ups and downs of illness increases our stress and creates frustration for others.

You can make a positive response to this problem by moving forward on two fronts. First, by applying strategies discussed in the chapter on pacing, you can smooth out the chronic illness roller coaster, bringing more predictability to your life. Pacing is based on understanding your limits and then living consistently within them.

The chapter on the energy envelope offers several ways to determine limits. The chapter on pacing shows how to translate that understanding into a more consistent and predictable lifestyle, reducing the number of times you have to cancel social commitments.

The second strategy for dealing with unpredictability is open communication. People in our program have reported success in discussing their situation with family and friends.

They stress that it is helpful to express the value you place on the relationships by saying something like, "I enjoy getting together with you and would like to maintain our friendship" and also to prepare others for possible cancellations by saying things like, "I have an illness with unpredictable symptoms that makes me less dependable than I would like to be."

Isolation

Having a serious illness often leads to a sense of isolation. The isolation can be both physical, because of spending more time alone, and psychological, because of feeling different from other people.

One strategy for responding to isolation is acceptance. If you have a moderate to severe case of CFS or fibromyalgia, it is very likely that you will have less social contact than before and instead spend more time alone. For ideas about putting solitude to good use, see the discussion of solitude in the section above on loss of relationships.

On the other hand, you may be able to reduce your sense of isolation by adjusting how you socialize. You may be able to keep some relationships alive by substituting phone calls or email contact for in-person meetings or by adjusting the frequency or type of in-person get togethers.

For example, instead of going out, you can ask people to visit you at home. Or you may get together for shorter periods of time than before, in quieter surroundings or with fewer people at a time.

A strategy for dealing with the sense of feeling different from other people is to build friendships with fellow patients, people who understand you because you share an illness in common. For suggestions on how to meet CFS and fibromyalgia patients, see the discussion of support groups and classes in the section on "Building Support" later in the chapter.

Guilt

Guilt is a common response to having CFS or fibromyalgia. We may feel guilty about not being able to work, thus depriving our family of income, or about not doing as much at home as we used to. Living in a society that emphasizes productivity, guilt about doing less than before is common.

It is appropriate to look at your situation in a realistic way. If you live with others, your illness probably has caused a redistribution of responsibilities in your family. But it is also helpful to remember that you are not sick by choice and illness has imposed limits on what you can do.

Guilt is one response to the losses imposed by illness. (For ideas on working through loss, see the next chapter.) You can turn feelings of guilt to positive use if you use them as a motivation to take good care of yourself. Strategies such as pacing, getting adequate rest, taking medications and controlling stress can help you improve so that you contribute at home to the extent feasible.

Another positive response to guilt is working to improve communication within your family and, if you work, with your employer. For some ideas, see the section "Improving Communication" later in this chapter.

Finally, consider developing new interests, as described in the next section.

Feeling Unneeded

If we are not as active as before and others step in to take our former roles, we may feel unneeded. Not feeling needed is part of the grief experience triggered by loss. Coming to terms with loss and moving beyond it to build a new life is one of the greatest challenges of long-term illness.

Serious illness brings pain and suffering, but it also offers the opportunity to reevaluate your life and to recast it in a new way. Some patients come to see their illness as a spiritual journey. Students in our program have often told us that while they would not have chosen to be ill, they consider themselves better persons because of it.

Being ill challenges us to find new meaning in response to a situation of pain and loss. By developing a new self-understanding, new relationships and new ways to contribute, we can respond positively to the challenge of loss. (For a more thorough discussion, see the section "Creating a New Life" in the next chapter.)

Feeling Dependent on Others

Our limits may feed fears that we will become dependent on others. When we don't have the energy and independence we once did, we may be fearful that, in the future, we won't be able to take care of ourselves or that those on whom we depend may leave us.

One response to these fears is to submit them to a reality check. Fibromyalgia is not a progressive disease and the majority of patients improve. While it is true that a relatively small number of CFS patients decline over time, the most common outcomes are improvement or stable symptoms.

Other people often feel helpless when they think 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. For ideas on how to create sustainable support, see the "Building Support" section later in the chapter.

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 them.

Improving Communication

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. If you live in a family, a healing approach to relationships can begin with acknowledging to yourself, and then to the other members of your family, how your illness and behavior affects them.

Just like patients, family members, too, can feel isolated and helpless. They may experience loss, because, like you, their dreams may be on hold because of your illness. And they may feel abandoned or feel frustrated at the restrictions on their lives. The unpredictability of symptoms and mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion.

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.

I have found that identifying my part in miscommunication or a problem is very helpful.

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.

Poor communication creates frustration in all relationships, whether with family, friends, coworkers or doctors. Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. Here are some general suggestions for achieving good communication. (For ideas on working productively with your doctors, see Chapter 5.)

1. Pick a good time. Select a time for important conversations when both you and the other person will be at your best. Find a time when you will not be distracted by pain or brain fog, and the other person can give good attention as well.

2. Be grateful and respectful. Treat the other person with respect, acknowledging his or her support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in shared problems. A healing approach can begin with your pointing out your limits and the things you do that make the other person's life more difficult. Show appreciation for the other's efforts.

3. Practice problem solving. Focus on the difficulties caused by your illness, rather than personalizing problems. Think of "gripes and solutions." Each person describes a complaint, and then you both focus on what can be done to solve the problem. Work on only one or two problems at a time.

4. Test your understanding. From time to time, check whether you have understood the other person's position by restating it in your own words. Good communication depends on each person's understanding the other's views.

Building 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. And having friends with the same illness may give you the opportunity to help others, which can boost your self-esteem.

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 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.

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, a fellow patient or a doctor or therapist. I was fortunate to have such a friend.

We set aside some time on the first of each month to discuss how I was doing. We each assessed my status using the Rating Scale from Chapter 1, and 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

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. Support 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, 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.

A word of warning: 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.

I suggest you evaluate your experiences in groups 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. 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.

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.

Professional Support

Psychotherapy helps some people with CFS and fibromyalgia. 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. 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.

References

Silver, Julie. "Chronic Pain in the Family," Fibromyalgia Aware: May 2005: 40-42.

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

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual. Oakland: New Harbinger, 2001.