#not even doctors sre educated on my condition i either have to do my best to educate them my damn self

[sparkelingspectres]

Just discovered theres less than a thousand people diagnosed with Loeys-Dietz type 4 in the united states no wonder no one even knows we exist :(

#feeling like no one understands me even amongst the disabled community is something ive always struggled with #and it is 12:56 am rn so im aware ive got after 10pm brain rot #but its so frustrating not only having an invisible disability that lowers my lifespan and affects basically everything in my life #but also not even having proper resources or anyone to talk to who understands me #and ik im just being over emotional i should go to bed but fr it can be so depressing and ostracizing living like this #not even doctors sre educated on my condition i either have to do my best to educate them my damn self #accept potentially inadequate treatment because they dont know our bodies unique differences #or travel for hours and fork out a quadrillion zillion dollars and plummet yourself into inescapable debt to recieve treatment #from a specialist and none of this is even counting the countless er visits i tally up every year #ugh #losing myself here #just venting im fine ill be okay after going to bed but i dont want to i wanna complain and whine all night im so tired of being #strong and fearless and unique #i just wanna be normal for a change #vent #negative #disabled