hi friends! so, with both disability pride month and the two year anniversary of my first inpatient hospitalization coming up, i wanted to share a bit about some of my recent experiences with the medical system as someone who is progressively medically complex, afro-indigenous, and multiply neurodivergent. i feel like topics regarding healthcare, especially criticism of the system, are often seen as taboo and i find that to be really harmful to patients. no one should be shamed for speaking out and it's my life mission to try and do what i can to change that reality
i have a genetic condition called hypermobile ehlers-danlos syndrome, which is a disorder that affects the integrity of your connective tissue, as well as some other, currently undiagnosed, congenital genetic anomalies. i am unfortunate enough to have a ton of multi-system involvement from my heds - something that isn't uncommon due to how important connective tissue is to your body. body system complications that affect me the most include neurological involvement, including dysautonomia (dysfunction of my autonomic nervous system), smooth muscle dysmotility (partial paralysis that largely affects my gi and urinary system), tissue/vascular fragility, and immune dysfunction.
at the end of march 2023, i ended up getting a port-a-cath placed for long term vascular access. at the time, i wasn't aware that my body cant tolerate silicone implants. i started experiencing symptoms pretty much immediately - bad pain going into my neck / shoulder, discharge from the insertion site, as well as severe inflammation where the port was placed under my skin. home health kept sending me into the er, suspicious that i had a port infection, but because my blood cultures were clear they refused to take action. a few months later, in july of 2023, i ended up being hospitalized because my body reacted so severely to the inflammation that my skin ulcerated, leaving a large hole on top of the port site.
around the same time, i was entering full blown bladder failure, which exacerbated my nutcracker syndrome, and completely unaware of why i was in so much pain. a few days before my hospitalization, i went into the er because my left flank pain was so severe that i was afraid that one of my organs had ruptured due to the large amount of vascular involvement with my heds. they ran scans and ultimately decided that the pain must've been muscle strain. a few days later, i ended up losing the ability to urinate on my own while inpatient for my port infection, making me have to rely on catheterization
i ended up having another port placed in december of 2023, after months with a picc line. this port was also problematic from the start - my tissue was so lax and scarred that the port would move around, causing providers to have to do multiple pokes (one day, i got stabbed in the chest 6 times).
in january of this year (2025), the skin on top of my port started ulcerating again. home health was concerned and sent me to the er a few times but no one would listen because my blood cultures were clear. i had chronic infection symptoms for months but because no one would listen to me i eventually assumed it must be my recurrent utis. in march of this year, i ended up being hospitalized again for sepsis and bacteremia.
i have since then had repeated bouts of sepsis (urosepsis now, not bacteremia) and been hospitalized several times. i have been on a line holiday since march and have been constantly in and out of the hospital because i can not sustain hydration on my own or absorb a lot of my medications anymore.
i had to move urgently because i needed more support & it's been difficult to establish care. everyone i have seen so far has refused to put any type of line in due to infection risk despite the fact that i can not survive without one. i am constantly covered in bruises, my veins are scarring up, and my ivs always infiltrate less than a day after placement - they're always painful as well!
the most frustrating thing is that this situation is not my fault. i did what i was supposed to. i kept my line clean, i was diligent about watching out for issues, and i sought help several times home health kept asking if they'd replaced my line and scratching their heads as to why no one would. at one point, i actually ended up having a ptsd attack in a hospital waiting room hallway - something that has NEVER happened to me before because i am pretty good at compartmentalizing - because i could tell history was repeating itself and i was helpless in stopping it
i am so exhausted and so angry. these instances were the most severe medical negligence from institutions that ive experienced, but i have countless other, "smaller" ones folded within them and throughout my life
if i didnt have the medical literacy that i do, i would be dead. this system intentionally tries to keep patients from understanding their care. it's often not the illnesses themselves that k!ll people. instead, it's the way that they are treated, and that's horrifying.
to all my disabled / chronically ill people out there, especially those not yet diagnosed: you know your body better than anyone in this world. there is an unfortunate stigma regarding being intimately involved in your own health care, including seeking other opinions, but your health matters so much more than that stigma. please don't be afraid to seek multiple opinions, especially if your provider is being dismissive of your concerns. and, lastly, i want you all to know that you're not alone. your experiences are real and many other people in this world have similar ones.
sending love to you all 🫶🏽 i hope that one day the world becomes kinder to all of us
