Posted by John O. on 9/3/2009, 4:49 pm, in reply to "participation"
69.129.197.8
It's the nature of online forums that have to do with medical issues that the people whose lives are only moderately affected are not nearly as likely to post than are those whose disease is in more advanced stages, whether or not those stages are seriously affecting them or whether they've found strategies that work for them to maximize their lifestyles in spite of them. I'm sure we can think of many such folks in those two categories. When I had my pneumothorax in Aoril I quickly found a forum in which they were discussed, and was shocked to find that unlike myself, who just had the one, and waited until 72 to have that, that the forum was dominated by people not only much younger than I was but who had had several lung collapses, expected more, and had serious ongoing issues with pain (whereas I had virtually none). After being badly shaken by reading these accounts I made a couple of postings myself, and found out what I should have realized at the beginning: that those like myself had perhaps posted once or twice, and then, having no further need for the information they found, simply left the forum and went on to live their lives. Whereas the ones with continuin serious issues kept talking and supporting one another.
I had "mild to moderate" COPD for 25 years or so before it started getting bad enough to send me to hospitals and put me on oxygen, and yet it never occurred to me to search out a forum to discuss my problems with, despite the fact that I hardly led a problem-free life. I might have been better prepared for what awaited me later if I had searched them out. Now,on this forum, I try to respond not only to people with severe problems but also with questions of any kind that cover territory where I've been--even if I was there some years ago. Also I think many of us have, or should have, a special obligation to respond to the newly diagnosed, who often are confused and anxious, and sometimes scared out of their wits, when they get the word. We have an awful lot to offer to those folks.
BTW, as others have pointed out, this is one of the few sites of its kind that do not require registration, or passwords. Anyone can sign in and post at any time. If you just fill out the "Your Name" box under "Post a Response" you can leave the box below, "Your Email:" blank, and your e-mail address will not show on the screen, or be available to any moderator or administrator. If you want your e-mail address to show, fill out the "Your Email:" box with it, and it will appear as an underline under "Your Name". But it's not necessary.
So let's follow Joyce's suggestion, and hope to hear more from the folks just starting out, or a ways along this journey. Your stories are just as important as those from us who are further down the road.
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