My friends. I need your help.
I have several dysautonomic conditions (POTS, hEDS, and Chiari), but I have started to experience some new symptoms. I was recently hospitalized for gastric emptying by regurgitation. It’s probably a sign that something systemically is changing, but obviously not sure yet.
Here are my problems, they are two-fold:
- I struggle hard with imposter syndrome. It took me ten years to get an officially diagnosis, and even then my doctors didn’t really know what to do for me. I’ve learned a lot through my own research. When I am feeling good for stretches of time, I convince myself that it’s not that bad and I’ve probably been exaggerating it all these years, just like doctors have always told me. But, of course, then I remember all of the hospital visits, the unpredictable flare ups, the ambulances, disabled periods, etc. and I know that I’m not making it up.
How do I get to a place where I can accept my condition and learn to appropriately cope? I feel so out of control and I’m terrified of thinking ahead for my future because I don’t know how progressed I will be at any point. I’m in an anxiety-produced stalemate.
- when I try to talk to friends, I really only have one, sometimes two people, who understand what this is like. Most of them, including family, seem to downplay what’s going on and dismiss it, saying, “I’m sure there’s an explanation, and it’s going to be okay.” Even when I say to them, “thank you, but right now I need some consolation and just someone to listen to me,” they tell me to calm down and not overthink things.
How can I explain the complexities of my condition, with the frustration of knowing its progressive (and progressing faster than I expected), that would be effective for them?
Any advice would be good right now. After being hospitalized two weeks ago for the gastric emptying, and looking ahead to an orthopedist appointment next week where we will discussing plans for potential surgery on my left knee, I’m very scared financially, mentally, and physically. Any support right now is appreciated.
