Ten Keys to Successful Coping 

8: Seek Support & Understanding

By Bruce Campbell

Chronic illness creates stresses for most relationships.  Relations with family, friends, coworkers and bosses, and even doctors are altered in ways which suggest that the area of relationships is another in which the limits imposed upon us by our illness can lead to frustrations.  The discussion below outlines five frustrations and strategies for dealing with them. 

Frustrations in Relations

1) Feeling Not Understood or Accepted: 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. Getting others to understand and accept our situation is a major challenge. 

2) Being a Burden for Others: Having less energy than in the past often makes it difficult to do much, both around the house and elsewhere. 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. And we may feel uncomfortably dependent on others. 

Limits and the unpredictability of symptoms not only create strains within the family, they can make it difficult to maintain existing relationships outside the family as well. 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. The uncertain course of the disease puts a strain on relationships. 

3) Isolation: Having less energy means we get out less, and may feel isolated. The isolation and loss of social life can put a strain on family relationships and feed depression. Also, isolation makes it hard to start new relationships. 

4) Guilt: Perhaps because they lack understanding of our condition or for other reasons, people may pressure us to do more than is healthy. 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.

5) Fears of Dependence and Abandonment: Our limits can feed fears about becoming dependent or 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. 

Strategies

Here are five strategies that may help you deal with frustration in relationships.

1) Assess Your Relationships: Having a chronic illness means less energy for relationships, so you may have to accept that some relationships will die. You may decide others are not worth maintaining. The cost of spending time with negative people may be more than you are willing to bear. Other relationships, in contrast, can be nurturing and thus worth preserving. 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.  

Some people think of their 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. You may want to concentrate 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.” 

2) Acknowledge Your Part: 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 changes the lives of all who are touched by it. 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. Just like patients, family members too can feel isolated and helpless. They may experience loss because their dreams, too, are put on hold.  They, too, 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.  

3) Educate Others, But Accept That Some May Never Understand: Some patients have reported success in trying to educate others about the illness.  Either by sitting down to talk with relatives and friends or by giving them something to read.  (The CFIDS Association of America's pamphlet titled "For Those Who Care" explains CFIDS to family members and friends.)  These patients 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.

4) Set Limits: Learn to set limits with yourself and then with 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. 

5) Make New Friends and Develop New Interests: 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, having friends with the same illness as yours may give you the opportunity to help others, which can boost your self-esteem. 

Some patients have used their illness as the occasion for developing new solitary interests. Recognizing that they will be spending less time with people than before, they have seen the situation as an opportunity to do things like reading and art work that they didn’t have enough time for earlier in their lives. See, for example, the article "In Praise of Solitude".

In Summary

Chronic illness can be isolating and demoralizing. Others may not always understand or sympathize. Having people in your life who acknowledge your suffering and offer support can be crucial. Seek out support from fellow patients and others who understand your situation; let other relationships go. Stay connected to family and friends to the extent possible, but be realistic in your expectations.