Thank you, Gracenote and Anne and others who have, or will, share on this thread, about what to do in terms of communicating with people with your XMRV results and, more broadly, in having ME/CFS. The reason is that we need not only the science, but how to translate that into social, medical and professional communication.
As Koan expressed so well with her avoidance of her doctor and of even speaking about her illness and limitations, I have been a lot like this too. I have had to FORCE myself to come up with some information, some explanation--but this is trying to gain entry onto a field which is already largely pre-programmed, and a mind set which doesn't allow for what I try to convey, or not without critical distortions. We know this.
But here is another aspect of my problem. I do not like identifying myself with an illness, a physical condition which will be interpreted as an identity, or a claim to an identity. I don't like defining myself as ANY identity: I am this; I am that. I am NOT, is more like it! No such delineation feels valid, or even interesting to me. You know, I never even used to like naming animals because I did not like circumscribing them with some name's suggestion about who they were. Identities have an intrinsic falseness to me, like stereotypes and caricatures, stick figures--
I also don't like another aspect: I'm sick therefore I need help and special treatment. I sure don't like that one. The victim identity repels in as much as it can be used to manipulate others, to gain attention and power. I dislike others doing this and would feel it unethical to act in this way. Even when I need help, it is very hard to ask for it, because I don't want to feel demanding, to put myself in that role...
Then there is the irony that if and when I really do need help, and try to ask for it, others don't believe me--because I don't do so in an effective, theatrical style. I don't know how to play the part! So I appear to be faking when I couldn't be more sincere. This speaks, very ironically, to how much of social communication is theatre and acting. I got a bellyful of fakers and manipulators in earlier days, people who pretended to need help when they didn't, while at the same time I did need help but didn't get it because I wasn't successful in the portrayal game.
But this theatre and acting skill, this communicative ability can be used to convey what is truthful, just as it can what is false. I see I have as much a right as others to pick up this tool and use it....The ethical question is, Is it coming from a truthful place and going to a truthful end?
But, now to address our question practically: I work out my communication ahead of time, as we are doing here. I practice it mentally, and even emotionally. So then I am prepared to come out with it. I control my part of the conversation so that I make and hold a space for what I want to say, and then I am clear. I define the context necessary to express the content I need to convey, and do so as clearly and simply as I can.
Probably has taken 12 years before I started trying to do this. Now I am at 15 and doing much better in effective communication. It is analogous to being on the tennis court finally, now, in the game, whereas before I was either on the sidelines or completely invisible.
This is all important stuff, and thank you all for helping us work it out!!!
Sing
Too far to one side is being a loud show off and too far to the other is being out of sight