What makes the CFIDS phenomenon so different? Why would a healthy person be so drawn to help? Global misperception.
CFIDS is too often misunderstood in the healthy community. Corrective action must be taken. PWC's cannot do it all. The energy just isn't there.
Persons with CFIDS fluctuate in severity of symptoms just enough to get a taste of the "good" days, only to crash and become restricted again. They have to learn their limitations and are always testing those limitations. (Many) PWC's don't look sick! Being paralyzed, or terminally ill, or missing a limb is a lot more acceptable in society, from the government to the individual family home. The level of frustration for the PWC must at times be as devastating as the FM pain, or the utter exhaustion, or the headaches, or the brain fog, or . . .
PWC's seem almost startled by the thought of healthies wanting to actively help on their behalf. Long-term PWC's, especially, seem to find it hard, emotionally, to accept that a healthy person would really be trying to understand. That happens when you beat your head against a wall for years and in some cases, decades. Many long-term PWC's are too discouraged to have faith in any non-PWC who isn't a scholar, or scientist, or celebrity, or politician.
You might find yourself wondering how much difference one healthy person without credentials can make. I wondered too. But I no longer doubt that one person can make a difference. I have seen it in my workplace - how attitudes have changed. Over time, my co-workers have been exposed to my many "lectures" as well as my writings and those of PWC's and caregivers. My co-workers have learned in stages. The key is to teach the rest of the population in stages like this.
My perception of CFIDS is skewed and limited because I am healthy. However, the perception of the PWC is limited as well-by having the disease. Just as a healthy person cannot step inside the syndrome to be able to fully understand, the PWC cannot step outside of it. It is essential for the PWC and their non-PWC friends to share their different perspectives in order to develop strategies for educating the rest of the healthy population (as well as the PWC's who dont yet realize they are PWC's).
While I rely heavily on many PWC's for my own CFIDS education, my interaction is not limited to them. Caregivers of PWC's have another perspective altogether and have taught me a great deal. Then, too, I also rely on those here at home who have learned from me.
Regarding CFIDS, I am not the "normal" healthy person. I am a healthy CFIDS/PWC advocate. Thus, in some respects, like the PWC or caregiver, I am "too close" to some things. Sometimes I need to rely on the questions or remarks of my family or friends (people who know about CFIDS, respect it, but aren't as close to it as I am) to help me keep my perspective.
Once you get beyond the general overview learning, and plunge into the real education - the research, corresponding with the people, meeting the people, etc., you lose an innocence. You are no longer naive about the pain, frustration, bitterness, struggles, and mini-triumphs. There is no longer as great a distance between yourself and the realities of the PWC experience.
You either become an advocate/activist or you turn and run the other way. Your perspective is influenced by your involvement with the people and the research. You no longer treat CFIDS as strictly information.
CFIDS is now treated with emotion. It becomes increasingly difficult to strike a balance between your involvement in the people you've met and your factual/academic view.
This is sometimes a difficult balancing act for me. I am a student of life and CFIDS is my school right now. The education has been overwhelming. The lessons are frequent and valuable. But, I'm emotionally involved too. CFIDS has had a profound effect on me. I ride an emotional rollercoaster because of my involvement with the people.
The balancing act comes in when I need to write or verbalize something for a healthy audience for educational purposes. It is hard for me to be totally objective. I find it difficult to present CFIDS information to healthies without commentary. That is one test of this education-separating fact and emotion to the greatest degree possible. I can and have done it. But my perspective becomes more and more blurred as it evolves with each passing day, with each PWC I meet. Fact is, you cannot be a good advocate of any cause if you are not emotionally involved.
PWC's and their healthy allies need to be careful in dealing with the emotion, the passion, the heat of it all. Unfortunately, image plays a major role in the presentation of CFIDS information to a healthy audience. It shouldn't have to be that way. PWC's should be allowed to be as angry and frustrated as those with other diseases. However, given the dynamics of CFIDS, as well as the history of how PWC's have been perceived and treated by society, image is indeed important in the context of writing about CFIDS. The target audience must first be informed about CFIDS. They must then be shown CFIDS.
In order to be a good CFIDS/PWC advocate, I need to acknowledge and welcome the emotional aspects, including the anger and frustration I feel on behalf of PWC's. However, I must step outside of the passion for just long enough to present the educational information as objectively as possible when addressing a naive healthy population.
Once the audience is informed, I can then show the more emotional aspects of CFIDS. I must do so in a somewhat controlled manner, giving the audience an illustration of CFIDS, something to which they can relate, something with which they can identify. I must show them the person with CFIDS.
If I can factually present examples of how CFIDS affects the life of the PWC, it will hopefully solicit compassion from the healthy reader/listener. In doing so, I can provide a "bridge" of sorts - bringing healthies into the works of PWCs. Everything I write and/or distribute includes the web address of Listening to CFIDS (edited by Sue Boettcher), in an effort to give the healthy reader their "real" education through the works of the PWC's themselves.
There's an irony here. To some PWC's and caregivers, I am perceived as insensitive because I am so fascinated with the many different aspects of the syndrome and the socio-political issues surrounding it. But, to some of the healthy people here who know me, the perception is that I am too emotionally involved - too sensitive - too into the actual people. For me, it gets more blurred every day.
Long-term PWC's have had their trust in mankind seriously damaged by their friends and family, government, doctors, insurance companies, the media. I abhor the fact that PWC's are essentially forced into a cynical existence. Society, on every level, hasn't given PWC's much reason to trust in anyone. Working together, PWC's, their caregivers, and healthy allies will be instrumental in influencing the evolution of society's perception, turning cynicism into hope.
Copyright 1998
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