Having been ill for ten years, you’d think I would have a grip on the research about what my body is doing to me. But to be honest I was too cautious in reading it. Nearly all doctors
, (with the exception of my GP thankfully) are extremely precious about medical knowledge and the last thing they want to see is patients who have read the research and, worse still, understood it.
Even in my nursing days I heard doctors grumbling about patients who had “Been on the internet,” and were asking questions. So I thought I might be better off keeping anything I knew to myself and not doing much research.
This has been a colossal failure as a method to ensure good medical care. So I have changed tack completely and I’m reading and listening to as much research as my foggy brain can deal with.
Having recently learned of the research that shows Fibromyalgia is likely to be dysautonomic I have made lots of little discoveries that fit a lot of the other symptoms into the ANS disorder. I would never have worked out I had POTS if I hadn’t read the research. I would never have known there was a good poor man’s tilt table test if I hadn’t read the research and I would never have discovered why my heart can gallop to 148 on a bad day and my legs swell and mottle. All of these pieces of the jigsaw are now neatly in place.
You could say, but there’s still no cure, and not much treatment. And you would be right. But the fact that I decided to take charge of my own health and fight for it has made a big difference to me. I am still getting gradually sicker and sicker. I’ve crashed out this week completely and been useless to be around. It’s not good, but at least I now know WHY this is happening, even if no doctor ever reads the research, I have, and now I know.
Knowing what’s happening, even when you can’t stop it, is much better than not knowing. It’s better to know for sure there is no cure and treatment is difficult, than to be left with the nagging sense that if only some medic could really pay attention there might be a cure.
Sadly 21st century medicine is nowhere near as advanced as fiction on tele might suggest. Too much medicine is strangled by the weeds of ego and self-serving along with political interests and of course money grabbing. Nothing new under the sun there.