I have free-floating anxiety about waiting for my test results to come back I actually have two tests out there. It's just starting to dawn on me that this is for real, and I'm no longer feeling the detached, more academic interest that I was initially. It's all been so very fascinating. And exciting. And there's been so much information to follow on this forum alone. But now I'm having my "Oh shit" moment.
If a test comes back positive, it's really rotten to have a retrovirus that will never go away and that I may have passed on to my children. If they both come back negative, it's really rotten that they don't have a good enough test yet so I won't really know if I do or don't have a retrovirus that will never go away.
If I hadn't been asked to come in for these two studies, I would have waited to be tested. I find I've been included into this early uncertain stage of this new discovery and I don't feel ready for it. (I'm not complaining, by the way. I know some of you would desperately like to be in this situation.)
What if the test comes back positive? What then? I don't mean with treatment that will take time to sort out and I expect that. But what do I do about telling people my children, my family, various healthcare professionals, other interested parties (or parties that should be interested)? I know some of you are already dealing with this and it must feel very odd to be among the few in the world to know you have XMRV, especially since no one really knows what it all means yet. How are you coping? What is helping you?
I'm wanting some help in coming up with a strategy for myself if/when my test comes back positive. And if I turn out not to need this information myself, hopefully some of you might feel better prepared when you are told you have XMRV.
To begin with, I'm hoping to develop a short, simple and clear explanation about XMRV that includes a few references and that can be personalized by me (and anyone else who would like to use it). I would like this to fit on one page with lots of white space left. What I don't want is to refer people initially to a site like this because it's too much to begin with (although excellent for anyone who's interested in digging deeper). Then maybe attach one article perhaps The New York Times first article?
I find short, simple and clear explanations are the hardest kind of writing to do.
Any thoughts? Anyone want to help with this?
If a test comes back positive, it's really rotten to have a retrovirus that will never go away and that I may have passed on to my children. If they both come back negative, it's really rotten that they don't have a good enough test yet so I won't really know if I do or don't have a retrovirus that will never go away.
If I hadn't been asked to come in for these two studies, I would have waited to be tested. I find I've been included into this early uncertain stage of this new discovery and I don't feel ready for it. (I'm not complaining, by the way. I know some of you would desperately like to be in this situation.)
What if the test comes back positive? What then? I don't mean with treatment that will take time to sort out and I expect that. But what do I do about telling people my children, my family, various healthcare professionals, other interested parties (or parties that should be interested)? I know some of you are already dealing with this and it must feel very odd to be among the few in the world to know you have XMRV, especially since no one really knows what it all means yet. How are you coping? What is helping you?
I'm wanting some help in coming up with a strategy for myself if/when my test comes back positive. And if I turn out not to need this information myself, hopefully some of you might feel better prepared when you are told you have XMRV.
To begin with, I'm hoping to develop a short, simple and clear explanation about XMRV that includes a few references and that can be personalized by me (and anyone else who would like to use it). I would like this to fit on one page with lots of white space left. What I don't want is to refer people initially to a site like this because it's too much to begin with (although excellent for anyone who's interested in digging deeper). Then maybe attach one article perhaps The New York Times first article?
I find short, simple and clear explanations are the hardest kind of writing to do.
Any thoughts? Anyone want to help with this?