Monday, August 13, 2007

You're your own best advocate!

The Lupus Lady's Autoimmune Disease Support site has an interesting collection of conditions (tho I'm not sure I'd classify them all as strictly autoimmune conditions) many of which are found coexisting with conditions like Fibro or CFS. She's got fact sheets for some conditions and links to for others but I'm putting it out there as a nice jumping off point for those that feel there's more to their condition than what's been diagnosed by their doc(s) so far.

Which brings me to a rant I must get off my chest then I promise no more rants for a good long while (too many blogs full 'o rant out there already).

I'm 35. I've been sick since I was a toddler! That's way too many hours (days, months, years?) wasted in doctors waiting rooms, and way too much of what's left of life consumed by illness in the meantime. When someone is dealing with an Enigmatic Illness it often takes years, sometimes decades before they're diagnosed. In the meantime you're called crazy or dosed with half the anti-depressants under the sun - unfortunately that's not an either/or as often as it's, "You're nuts, take these pills", especially if the patient is a girl/woman. See, that lets the doctor feel like he's off the hook and then he gets to walk away with a sense of, "Hey, solved that one...NEXT!" If I hadn't kept pushing, and kept researching, and kept talking I'd doubtless still be waiting for a diagnosis and may never have found out about Ehlers-Danlos Syndrome.

A favorite quote of mine is by Ralph Waldo Emerson: Knowledge is the antidote to fear. As chronically ill people some of the biggest favors we can do for ourselves regarding our health care is to educate ourselves, keep up-to-date on the latest developments, and talk to one another. It was in an online support group for Fibromyalgia that I found out about EDS, I went on to research the daylights out of EDS, and finally found a geneticist and genetic counselor within driving distance - all online!

Thank God for the internet!

The internet has become our great equalizer. If we can't find it on the internet there's a good chance we can find a book about it on the internet. With such a fantastic resource at our fingertips I truly believe we can become our own best health care advocates if we're willing to. And if/when we can't, we need to ask for help from those around us (I'm still working on that asking for help part. :o)