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Fibro info and advice
Jul. 31st, 2011 06:50 pmA friend asked for some of my perspective on fibro, since I've been diagnosed with it for about 16 years now, and showing symptoms for at least several years beyond that (we first started trying to diagnose my mystery medical maladies in my late teens). True to the stats, it took me about five years from onset to diagnosis, and there was plenty of frustration involved.
Since I ended up writing a small pamphlet in email, I figured I'd also share it here in case it's useful to anyone else.
Caveats: fibro's a weird disease, there are a lot of competing theories about it (not just crackpot stuff but serious ongoing research in different directions), and "YMMV" and "future research may prove me entirely wrong" can't be overstated. In addition, as a chronic condition without much satisfactory treatment currently available, it's very fertile territory for a lot of stuff that I absolutely consider quackery designed to take advantage of desperate people. Also, I'm very far from the "perfect patient" in all sorts of ways. Hits all my buttons about autonomy and power dynamics to have to deal with gatekeeping around my own potential functionality. As a result, when I have an option that leaves me less tightly entwined with the medical system, I often take it even if it's a trade-off for slightly less improvement in other ways.
I absolutely welcome other folks with fibro to leave comments about what has and hasn't worked for them, although in this case I'd request that folks who don't have fibro or some other very similar chronic condition refrain from offering medical/treatment suggestions. One of the more frustrating things about having any of the not-easily-treated chronic illnesses is being swamped from all sides with advice from well-meaning people who don't necessarily understand the extent to which most people with chronic illnesses do their own research. And fundamentally, pressing me about my treatment decisions is a request for me to lay out my entire 20-year medical history and personal philosophy about treatment, and defend my decisions to you. That's not a casual thing, and that's what a lot of people don't get when they go into "best intentions" mode.
So, all that said, here's what I wrote:
( Read more... )
Since I ended up writing a small pamphlet in email, I figured I'd also share it here in case it's useful to anyone else.
Caveats: fibro's a weird disease, there are a lot of competing theories about it (not just crackpot stuff but serious ongoing research in different directions), and "YMMV" and "future research may prove me entirely wrong" can't be overstated. In addition, as a chronic condition without much satisfactory treatment currently available, it's very fertile territory for a lot of stuff that I absolutely consider quackery designed to take advantage of desperate people. Also, I'm very far from the "perfect patient" in all sorts of ways. Hits all my buttons about autonomy and power dynamics to have to deal with gatekeeping around my own potential functionality. As a result, when I have an option that leaves me less tightly entwined with the medical system, I often take it even if it's a trade-off for slightly less improvement in other ways.
I absolutely welcome other folks with fibro to leave comments about what has and hasn't worked for them, although in this case I'd request that folks who don't have fibro or some other very similar chronic condition refrain from offering medical/treatment suggestions. One of the more frustrating things about having any of the not-easily-treated chronic illnesses is being swamped from all sides with advice from well-meaning people who don't necessarily understand the extent to which most people with chronic illnesses do their own research. And fundamentally, pressing me about my treatment decisions is a request for me to lay out my entire 20-year medical history and personal philosophy about treatment, and defend my decisions to you. That's not a casual thing, and that's what a lot of people don't get when they go into "best intentions" mode.
So, all that said, here's what I wrote:
( Read more... )
