What Works for Managing CFIDS and Fibromyalgia

7:  Improving Relationships

By Bruce Campbell

Chronic illness changes relationships, both for the person who is ill and for others as well, creating new strains and frustrations. Sources of frustration for people with CFIDS and fibromyalgia include not feeling understood or accepted, isolation, feeling pressure to do more than is healthy, the unpredictability of symptoms, rejection and abandonment. This article describes seven coping strategies used by people in our self-help course to improve their relationships.

1) Re-Assessing Relationships

People with CFIDS and fibromyalgia often find themselves re-assessing their relationships, making deliberate decisions about who to include in their lives. This re-assessment or “relationship triage” is motivated by two aspects of chronic illness. First, illness imposes limits, which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.

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.

I am learning to stay away from those people who add stress to my life and to spend more time with those who keep me laughing and who understand me.

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.

2) Seeking Support 

Being ill is difficult. Feeling understood and supportive 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.

Fellow Patients

Relations with other patients are immensely helpful, because they give me a sense that I have people in my life who truly understand. This has both lessened the frustrations of relationships and reduced the frustration of being ill.

I have a dear friend who has a different chronic condition but who is someone I can share my day and feelings with. It works wonders for both of us. Getting support from people who are in the same place as you helps.

The most helpful relations with patients have been with people who have significantly recovered. They seem to be the most supportive and understanding. Others are less into self-help strategies or genuine support, more into what is the latest miracle cure.

Support from Others

I have found talking with selective friends to be very therapeutic. It makes life with chronic illness a little easier to take.

At first I knew no other people with CFS. Then I met a lot, but isolated myself from healthy people. Now I’ve been working on nurturing relationships with both sets. I need people I can talk to about my illness, but I also need to get outside the world of CFS as well.

I am really lucky because I have two really good sources of caring friends. First is my church, especially the Bible study group to which I belong. Second is through the business I started a year ago.

3) Practicing Assertiveness 

Illness imposes limits. Assertiveness means setting safe limits for oneself, then communicating them to others.

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.

I often use the illness as an excuse with those who would obligate me by asking me to be on boards, give showers, serve in the community, etc. At first it was very hard to say no, because I love a challenge or a party, am capable, and like to be active and involved. I’ve found that some people need to be reminded several times before they stop asking, but that’s OK.

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.

4) Educating Others Selectively

Patients are sometimes successful in educating others about their illness, but most put limits on their efforts.

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.

I try to help others understand my illness, but I don’t force it down their throats. I try to talk openly about my illness without always focusing on it. If being open spurs further questions, then I share what I can. But I no longer waste my energy trying to educate everyone.

I’m OK with the fact that some people are very sympathetic, some people try to understand but never really get it, and that others cannot or will not understand or sympathize at all.

5) Doing Your Part

Chronic illness makes life more difficult for others as well. Family members, for example, may experience loss and feel isolated and helpless. Patients report another strategy for improving relationships is to focus on what they can do to make relationships work.

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 mis-communication or a problem is very helpful.

6) Accepting Help 

Patients report relations are improved when they ask for help in specific ways or allow others to set boundaries for them. Good communication can reduce fears of abandonment.

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.

My husband and children are always asking me ‘Are you sure you are up for it?’ when I agree to go places. They are my protectors and it feels good. When my husband senses that I am isolating myself, he suggests doing things with me that are unstressful like ordering pizza and playing card games with him or all of us going out for a movie.

One of my biggest fears was that I would become such a burden that my husband would abandon me. At one point, he almost did. But we took it as a challenge and now communicate much more openly and honestly and have re-committed to each other.

7) Embracing Solitude

Illness often forces patients to spend much more time alone than before. Some patients see illness as providing an opportunity to develop new solitary interests.

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.

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