Story: "The Worst...Was Not Being Believed"

The Scope Blog over at Standford Medicine has a beautifully written piece by a woman with POTS EDS and MCAS about how not being believed by doctors for years was worse even than being sick. So you're not dying? Who cares when you're also not living. I could have written every word. Some excerpts:  

"The worst experience I’ve ever had — worse than the most debilitating symptom — was not being believed, over and over again, for decades. It’s not only fellow females who know what I mean, but it’s especially endemic in our culture for women (and anyone marginalized) to be denied this way, to have our experiences invalidated in all kinds of contexts, including the medical. You can’t run anymore, or walk, or even stand? It’s just because you don’t exercise enough. You faint? You just don’t eat enough. You can’t eat? It’s just because you’re a worrier. Lately the media has been offering a lot of pseudo-feminist advice, enjoining us to stop saying “just” and “sorry.” But this is the problem. It’s not only that our knowledge of our own bodies is diminished and dismissed, but that our suffering is understood to be just — and we should be sorry for it, because it’s our fault."
I’m immensely thankful to the expert physicians who discovered at last that something is wrong, and that it’s not me. Now, I own my experience, and a wave of nausea no longer brings a wave of guilt. I’m done with shame. Still, I’m sad, too, because millions of people — including members of my own family —are still waiting for that relief. Maybe, like mine, their disease isn’t taught in medical school yet, because the research is less than ten years old. Or they can’t travel, either physically or financially, to another state like I did to see a specialist who knows what tests to order. Perhaps they’re unable to convince themselves that there is hope, or worse, that they are worth the trouble. I want to tell them: You’re worth the trouble. You have to believe me. There is no one whose belief is more important than your own.

Read the entire piece here. It's worth your five minutes.