Whew! I’m really not sure where to start. I guess it’s enough to say that life has been a real whirlwind lately, with an unexpected family illness. So I have been on the go, in addition to other responsibilities. There are days that I am just wiped out, and my doctor was understanding enough to increase my pain meds. But, although the increased activity is far from over, it should settle into a predictable pattern in the next week or two. When I can predict what my energy needs will be, I can manage my energy budget in a much healthier manner.
This brings me to what I want to talk about in this letter. I recently read an article on-line from a newsgroup called Co-Cure. Although much of the research I see in this newsletter is fairly technical, I found this piece to be of interest. This item concerns research done at two universities in Canada, looking at how CFS affects self-image.
“For many another stage in the processes involved in coming to terms with CFS was the acceptance of the newly constructed self. Having been confronted with loss of the former self, of body functioning, of friends and even of a legitimate place in society, people with CFS tended to develop a new sense of the normal [Tishelman]. They talked of becoming new selves––selves that they say they value more than previous selves. They did not seek a return to previous functioning––or a supernormal identity––they did not "settle" for something less than they were before, or even a return to the self before the illness; instead they invented new and, they believed, better selves.
The radically different self that was often described is put in the following terms by one respondent.” “Right, I would totally sum it up as it has changed every single fibre of me as far as internal changes, lifestyle changes, relationship changes, career changes, body changes, mind changes, everything possible… it's really big…. (Janet)”
“Some emphasized how their values had drastically changed. They began to question what they had assumed to be important previously. They said they became more philosophical and began to look at the `big picture' of life's meaning.”
This research looked at the sociological aspects of the CFIDS diagnosis, and I’m relatively confident that similar attitudes are present in those with FM. At least I know that’s true for me. I had to find the things that were really important in my life. I had to look at all of my life, instead of just what I contributed at my job.
I had to work on developing other relationships, with family and friends, and with the world at large, including a greater appreciation of nature and my environment. But most important, I needed to be able to see those relationships as positives in my life, things that were more important than my pain and other symptoms. That doesn’t mean I don’t have to take care of myself, but not by cutting myself off from the world.
I think it is easy, when you don’t feel like you once did, and can’t do those things you were able to in the past, to isolate yourself, if for no other reason than having to explain why you can’t perform in the same manner now. Since we “look normal,” the expectations of family and friends are difficult to modify, and we may strive to meet those expectations, and force ourselves to overdo. But many of the participants in this study saw themselves developing stronger relationships because they now had time for them. They also saw themselves as stronger people who had learned to stand up for themselves. I think that comes of learning to live your life around the things that you find really important, within your energy and pain boundaries.
“Some participants talked about how they wanted to use their illness experiences to change the way they acted and to remind them of the importance of balance in their lives even when they were better.”
A number of those involved in the study talked about being more patient and pacing themselves. They said they felt more compassion for others and were more confident about who they were. Some of them talked about becoming more confident in the process of learning to say no, when they knew the activity would overtax them.
So, we may no longer be capable of being “super-woman or super-man” in the sense of juggling so many activities and obligations that people wonder how we possibly can keep up. But we can learn to be “super” human beings, by investing the time and energy we do have in those things that are of importance to us as individuals. For some of us, that may still mean earning a living, but finding a more positive and manageable way to do it. Or it may mean spending more of our time on relationships with family and friends. Giving of ourselves, more than our time and energy can be very rewarding for our souls. We have been given an opportunity to “stop and smell the roses.”
Yours in health,
I welcome your comments and questions at: email@example.com. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice
Juanne N. Clarke [a] and Susan James [b]
[a] Department of Sociology and Anthropology, Wilfrid Laurier University, Waterloo, ON, Canada N2L 3C5 [b] Department of Educational and Counseling Psychology and Special Education, University of British Columbia, Vancouver, BC, Canada V6T 1Z4 “The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome” Social Science & Medicine Volume 57, Issue 8, October 2003, Pages 1387-1395.
C. Tishelman and L. Sachs, The diagnostic process and the boundaries of normal. Qualitative Health Research 8 1 (1998), pp. 48–60.