Meeting the Challenges of Long-Term Illness

Strengthening Your Ties

By Bruce Campbell

As patients with serious but invisible illnesses, we face a number of problems in the area of relationships. First, our illness is not accepted or understood. We may have trouble convincing others that we have a serious illness that imposes major limits on us. 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. Thus, getting others to understand and accept our situation is a major challenge.

Second, our limits create problems within the family. Having less energy makes it difficult to do as much as before. Both we and other members of the family may have difficulty adjusting expectations to fit our new limits. Others may have to assume new responsibilities, which sometimes generates resentment. We may feel guilty about not doing our share. Our limits may make us uncomfortably dependent on others.

Third, limits and the unpredictability of symptoms can make it difficult to maintain existing relationships outside the family. Being ill makes it harder to get together with people. We may be unable to socialize in ways we used to. We may find it difficult to honor 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.

Also, 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 or that those on whom we depend may leave us.

And finally, 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 and others would like can lead to our doing too much.

So illness creates various challenges in the area of relationships. The rest of this article and all of the next one offer ideas to help you respond to relationship frustrations.

Assess Your Relationships 

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. You may decide to keep others and rate still others as 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: “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.”

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 when feel dependent and 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.”

Nurture Important Relationships

Work hard to nurture those relationships that are most important to you, especially that 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 five to one. 

Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. To improve communication with your partner, consider the following suggestions.

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

2. Be grateful and respectful. Treat your partner with respect, acknowledging their support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in family problems. 

3. Practice problem solving. Focus on the difficulties caused by the illness, rather than personalizing problems. Think of “gripes and solutions”: describe complaints, then discuss possible solutions. 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. 

Do Your Part 

Our illness affects those who are close to us. It 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. A healing approach to relationships can begin with our acknowledging to ourselves and then to others how our illness and behavior affects them.

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. 

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.

Educate Others (Selectively)

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 pamphlet 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 group gave the CFIDS pamphlet to her husband and children, asking that they read it 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.”

Embrace Solitude

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.”