Angry

God am I so fucking angry.

I'm angry at my doctors, I'm angry for myself, for the childhood I lost, the future that may be permanently shorted by medical neglect. I'm angry for my grandparents, my aunts and uncles, my cousins, etc. I'm angry that so much of my family died young, that until me no one did further looking because they were women, or over weight, or because they weren't white (the ethnic group my family is from is now considered white but wasn't untill the 60-70ish). I'm so angry that everytime I've asked for testing it wasn't fully done and no one told me. I'm angry that conditions I have/likely have were ruled out without ever checking all because my doctors didn't want to do their jobs.

I'm angry that Ive had to spend all day, every day, since I was 8 trying to figure out what I have. I'm angry that I'm finally figuring it out and it makes perfect sense. I'm angry that my life could be shorter because my doctors were shit heads (if it's shorter because it's shorter I can accept it, my body has been fighting my whole life, but if I die at 50 because a doctor refused to do their job I'm going to be so angry).

I'm so angry that none of my doctors were willing to work together. I'm so angry that I'm a textbook case, with textbook symptoms. That although rare and ultra rare, some of them were so easy to find. I'm angry that I'm now terrified of doctors because of the way I've been treated. I'm angry that Im the process of getting organs removed because of possibly treatable conditions. I'm angry that none of my doctors were willing to look deeper because I had a diagnosis, even when time and time again it was proven wrong. I'm angry that so many doctors refused to document anything that didn't fit their exact diagnosis, anything that made their diagnosis look even remotely wrong.

I'm just so angry.

This rant has been brought to you by me lurking eds forums and finding out about cah-x, the fact that despite being told all monogenic EDS types were ruled out, TNXB wasn't tested (and I meet the diagnostic criteria to require either generic testing or a clinical diagnosis), a recent ABCC8 VUS (which basically all my doctors -besides the one who fought me on testing it- believe to be pathogenic), and finding out autoimmune conditions can be seronegative (for years I've been told in a textbook lupus case, including some very distinct NPSLE traits, but I've never had a positive ANA or antibody test, and I've recently got a new GP who actually fully supports an SLE diagnosis, even if he can't give it).

Apologies for any bad spelling or formatting, this was a more emotional rant.