How do we deal with the consistent fight.

I'm 20yr and I've been taking charge of my health now for 3 years and am i the only one getting sick of the gd fight. between the practitioners, the tests and just the fight with my body getting out of bed everyday not to mention the will to fight.

I guess I'm lucky in some ways as I'm stupidly knowledgeable on the condition and I'm only on my second GP, but even then It's been more of a fight that it should of been.

I started out with my mothers GP trying to focus on POTS as i have alot of dysoanomia symptoms and a family history. Yea no, he basically refused to continue the road of formal testing for HEDS (next doc knocked that out in less an a year) and wouldnt do anything pass the Standing BP test which him and most other doctors seem to have to do twice to get an accurate result 🤷‍♂️ but no anything that would show POTS.

I was seeing him for nearly 2 years of deteriorating health from early 2023- mid 2023 i lost 20 kilos by 2024 I had lost another 5 I went from 85kgs in Feb 2023 to 53kgs in Jan 2024, and now I can't gain weight and am lucky to go thru random losses and gains landing me between 45-55kgs in the past 2 years.

I confronted him many times with my frustrations I mean he had diagnosed and helped my mother with alot of this expect a formal HEDS. I eventually got him to admit the whole reason he was halting my diagnoses for and i quote "I dont want you turning into your mother." ITS GENETIC! ITS ALL GENETIC FFS.

Been with my new doctor for over a year and I'm getting somewhere i guess, if you count inconclusive test results and its just frustrating.

During my colonoscopy and endoscopy my condition was questioned and doubted despite me literally bending my fingers back until they get to my wrist or idk moving my ribs, I was shamed for not being genetically tested. Mind you my referral was pending, the week after the appointment and lovely interaction guess what the hospital that shamed me for not having the testing WONT PROVID THE TESTING.

Generally when do i just wave the flag, take the drugs they give me for pain and just deal with it until the disability kicks in.

I'm 20years old and I'm just about over fighting everyone just to get the diagnosis I need.