reflections of navigating the medical system

3 sept 2025, 11pm.

the pain in my stomach starts to become unbearable. i lay next to jackson, wondering if i should head to the emergency. i hate the hospital system. the stressful environment. but something deep inside me knows something is very wrong.

i start to get very cold. fever-like.

every evening for the past two weeks i’ve had these cold sweats. i cover myself in three jumpers. or i jump in a boiling hot bath. i swallow panadol just to take the edge off. then by morning it passes.

but tonight, with this stomach pain, it’s different. it’s unbearable. 10/10 pain.

12:30am rolls around.

i can’t take it anymore. i’m curled in fetal position, shaking, groaning. i wake jackson up.

“i think i need to go to hospital.”

we rush to robina. the entrance is chaos. drunks, druggies, security, cops everywhere. blurred vision. confused. dazed from pain. for a second i thought - am i in hospital, or the cop shop?

a nurse sees me bent over and rushes me inside. endone offered immediately. i say yes. i consent to be admitted.

this is the start of realising the medical system is a system, just like any system in this capitalistic world, its a game. and you just gotta play it right.

so i set an intention in the car on the way in. instead of resisting the medical system, i’ll trust it. use it as a tool to help me. in the past, i always met it with resistance and distrust. and in return, i was met with resistance and stress.

this time, i’d try something different. change my mindset. ignore the bullshit. play the game.

———————

(the last time i was in hospital, about a month prior)

it was my first ever stay. i had a biopsy as my rheumatology team was worried about the blood and protein found in my urine, it all happened so quickly.

the next day, i was diagnosed with stage 4 lupus nephritis and doctors telling me this could lead to kidney failure soon if no action is taken.

so like a good little patient, i forced myself to trust and do as told. I was told to admit myself in hospital for three days of IV steroid treatment and start of my endless list of medication.

i did not realise the side effects i was in for: hot flushes, chest pains, anxiety, hunger but loss of appetite at the same time, annoyance, high and lows, confusion, blurred vision, headaches, nausea, pain.

with very little communication from doctors and scared for my health, i was left defeated.

3 days in, i thought i was going to get discharged as planned, but quickly told i had to stay.

with little explanation and being dismissed and shushed by the doctor that day, i lost it at 2am in the morning and discharged myself

i’m so sorry to the nurse that had to deal with my menty b.

————————

so with that last experience still heavy on me, i knew i had to put my ego down this time. fully trust myself and the team. and it paid off.

this time, i communicated every single thing, i did not beat around the bush.

i asked for what i needed and wanted, including asking for a lot of communication. i listened with intent, respect, showed my pain, humanity, authentic self and honesty and the team reciprocated.

the more i showed i was human, the more they showed they were human too.

my renal specialist the day i was admitted was full of compassion. he saw my pain. he called me “jalipa,” my last name. i was in so much pain i snapped back: “that is my last name. that is not my name. my name is shekel.”

in the past i would’ve been too polite. but he appreciated it. gave me banter the next day.

he was honest, communicated exactly what his thoughts are and what should be done. i could not thank him enough, thank you Dr P. the words “we’re listening now” when i cried to him sharing that no doctors have listened to my horrible side effects was so soothing and exactly what i needed to hear. and action was taken.

as much as patients expect communication from doctors, i think doctors need it from us too. if we need to scream, then scream. but we also need empathy. they’re also just trying to navigate this complicated public system.

they took me off one medication. it made a world of difference. they fought for another that isn’t funded on the pbs - costing the gov $$$ - and they got it approved. i’m so, so grateful.

the nurses, who carried my pain, my cries, my breakdowns, my endless requests for back smacks, heat packs, water refills, panadols, yes and no to endone, thank you.

tio, my mexican uncle, the phlebotomist who drew my blood every morning. somehow in five minutes we’d have deep chats. you reminded me never to lose my flare.

the doctors i was open with - truly open - thank you too. especially the 23-year-old gen z doc who suggested chewing gum when i told him prednisone made me feel like i was on mdma. gold.

and lastly, rach. my dear dear doctor friend. thank god i met you last year. you’ve given me so much insight into how the system works. so much empathy for the people inside it - doctors, nurses - navigating the same game as us patients.

we’re all just pawns.

i’ve realised patients should be taught how the system works. maybe then, there’d be less frustration on both sides.

lesson learnt:
we’re all just trying to navigate this complicated system built on money. a business. it’s unfortunate, but it’s reality.

so let’s play the game right—
with empathy.
with compassion.
and with humanity.

fuck professionalism. let’s just be real.

love, shek x