I am so tired of people trivializing how much I suffer. No one gets how severe the POTS attacks are. They are completely incapacitating. I can't stand, sit, or function from them at all. And the sound and light and scent sensitivity, when I flare up are impossible to ever function or work with. And then there's the dizziness and the trouble breathing. I get short of breath because of the POTS. And I'm not even mentioning the fatigue and pain all over. I can't live, work, join anything, do anything while suffering like this. And I still get ignorant idiots that don't understand.
People still tell me I should get out more, join things, get a little job. Get out there in the real world. Don't these idiots realize that if I could do those things, I would be? Would I really need their stupid advice?
Still getting told I should push myself. Oh, you're just not trying hard enough. Yeah, you try having it.
I'm tired of going to doctors who do not understand and do not take my symptoms seriously at all. They trivialize anything I say. I even had one in recent years tell me that he has real sick people coming into his office and what was I doing there. He said it in a real nasty way, too. The entire medical community needs a real overhaul. Do they think it's fun for us to have to go to their offices? I'd rather be dead. I hate going. And there have been times when the visits were not covered by insurance and were a huge financial hardship. And I still got treated like I was an attention seeker or something.
Even my best friend doesn't understand. Every once in awhile, she'll come out with a comment indicating she thinks I can do more than I can. And I really can't.
I'm just sick of people not understanding and trivializing it. I'm severely disabled. I might not look like I am, but I really am. I can rarely ever leave my home. I can't even get my snail mail much. I have to wait days till I feel I can go get it because I'm usually too weak, lightheaded, sick, dizzy to do so.
It's a horrible, isolating, incapacitating disease that steals your entire life. I can rarely ever do anything. But no one sees it because they don't live with me and don't get how bad it really is. And I didn't even talk about the adult autism symptoms I get from it. The aphasia, the audio processing disorder. All of it makes communicating in the real world a million times harder. I am not very functional at all.
And I'm tired of living in a world that refuses to recognize how severe this disease really is.
Blog entry posted by Carrigon, Apr 2, 2012.