Been coaching my friend thru ER BS since 4pm (they’ve been there since 2) and LET ME TELL YOU it’s a fucking LOT. A fractured tailbone & possibly a rib + almost certainly soft tissue tears (prob EDS)

Like always happens to marginalized ppl - they got left without pain control https://twitter.com/cedarsageskoden/status/1312577837153492994

They were checked in around 1.30 and triaged straight to a bed. They had a fall roller skating (on their tailbone) but they also had really severe pain in their mid back and ribs and while they drove themselves to the ER almost had to pull over and call an ambulance it was so bad

They told the intake nurse this, their blood pressure read 170 (a sure sign of severe pain) and they also told the nurse this was the worst pain of their lives (because it was). The nurse just stared at them (we all know that one).

When being taken to the room, barely able to walk the nurse just charged ahead and seemed annoyed they needed time.

Then... my friend was left in a room divided by a bulletin board the other side away from the door with no call button (the other patient had it)

The other patient was asleep and they didn’t want to disturb them. They waited and waited and no one came to check on them. Hours went by and we were trying to find ways to help (couldn’t go down there and advocate because Covid). M tried to call, I told Bailey to yell

Even though I know I wouldn’t have been brave enough to yell myself. So around 5.30pm, nearly 4 hours after they were checked in M was in the car about to go down and at least tell them at the door to go help our friend.

I was so worried because I’ve BEEN in that much pain!

And as you’ve all seen me talk about pain control - the more out of control it gets the harder it is to bring it down.

Well, Bailey overhears the nurse in the hallway saying they’ll get someone Tylenol, so they finally yell out ‘me too please’ their roommate wakes up!

They’ve been in 11-12/10 pain this whole time. Their roommate asks what they’re there for and they explain their fall and injury and they’re worried they’ve wrecked their back. He goes goes OMG and says he’s gotta fix that and RUNS OFF with two broken wrists and a shattered hand

TO FIND A NURSE to go bring some Tylenol.

The rest of the story is my friend’s to tell but needless to say this guy is a HERO and had to run off a couple times to help. I was helping my friend this whole time with what to say, how to say it -

Basically all the ‘Good Model Patient’ magic keywords to get proper help with their pain.

Thing was I could tell they needed something stronger but I knew moving to that too quick and women, gender queer, & especially Indigenous people are written off as drug seeking real fast

So you kind of have to feel it out and maybe start with bs Tylenol even though it takes forever to work and won’t touch this kind of pain.

Another half an hour goes by and by this point I’m losing it that my friend is still in pain and hasn’t seen anyone in hours.

Thankfully their hero roommate’s tenacity in helping them meant that the doctor was finally there. They ended up with a young, compassionate doctor who listened and understood and said “I’ll get the Tylenol let me know if you need anything stronger”

So I text yell that YES YOU NEED SOMETHING FASTER AND STRONGER. So they were able to advocate and ask the doctor.

The thing was I think after he’d made them change into a gown that spiked their pain again and he could see it on them by then because now they’re crying a lot

It shouldn’t have got to there. Because pain meds have to get ordered and BP has to be taken again and all that it took another half an hour. By that point it had been FIVE hours in the ER and nearly 6 since the injury.

They got a REALLY good doctor and care has been great since

It could have gone the other way. I’ve had it go the other way. I’ve been treated like a drug seeker more than I’ve ever had proper or adequate pain treatment in these situations.

It’s now 6 1/2 hours since we started texting...

We’ve barely stopped texting that whole time and while I have a lot of trauma wrapped up in medical situations like this, if that trauma is good for anything it’s for teaching my friends how to safely and effectively advocate.

There’s been a lot more advocacy involved in 6 1/2 hours as you can imagine, but the biggest triumph is my friend got REALLY decent pain control before the first x-ray showing the fracture, so, that’s something.

I hate we all go through this, but we pass on our wisdom

Oh also let me tell you it’s nearly 11pm and my friend hasn’t eaten at ALL today. They’ve asked if there’s any food a few times but the ER is slammed.

Ugh hospitals are the worst

PHEW finally done. Nearly 12 hours later: they’re home. They never got food. From CT, only one fracture but LOTS of soft tissue damage

And guess what??! Discharged with no pain control

No food, only 1 round of pain meds, 11 hours, & Dr made crass jokes about it on discharge.

I’m so fucking angry how much our medical system fails our most vulnerable. My friend is a queer, disabled Indigenous person who lives with chronic pain that never goes below 3-4/10 and today was in the worst pain of their life from an accident. 1 round of pain meds & off you go.

No pillow or treatment, nothing more than “try a hot bath” (ON A BROKEN TAILBONE)

I know we’re in an opioid crisis but this does nothing to fix that but punish our most vulnerable and potentially push them to seeking illegitimate sources of pain control.

Angry doesn’t cover it

God I’m exhausted and it wasn’t even me in that hellish place on my own in that much pain. I wish I could have been in there with them by their side.

Fuck this pandemic and fuck our biased and torturous medical system.

PS, ER doctors: “haha you’ve been in this ER longer than any other patient today ahahaaa” is not the cute fucking joke you think it is.

Grow the fuck up and realize what you’re saying here. To an Indigenous 2S person who you failed to give adequate treatment to inside 11 hours.

My friend and I are debriefing this morning about everything that happened yesterday and the final piece of information that’s sent me over the top?

In the second half of the 11 hours a woman came in who’d rolled her ankle. Of course it turned out to be just a sprain...

The SAME doctor sent her home with Tylenol 3s. That’s Tylenol with 30mg codeine. That’s a HEFTY opiate that when overprescribed can be the gateway to prescription drug abuse.

It is only overprescribed to SOME people - usually middle class, nicely presented white people.

My friend who has not only a broken tailbone but EXTENSIVE soft tissue damage all the way from their tailbone to their mid back that is VISIBLE on CT got sent home with “take a hot bath” and “alternate Advil and Tylenol”.

My friend who is a tattooed, 2S Indigenous person.

TAKE A FUCKING BATH. On a broken tail bone. HOW?!? On their stomach with a FUCKING SNORKEL?

The extra kicker? He sent them off with ZERO discharge papers, instructions, or record of care and diagnosis. NOTHING. So they don’t even know the doctor’s name or a care plan.

I spent the early hours of this morning with researching medical info (because I know how to do this effectively after YEARS of this bullshit) and established a care plan for my friend. ME, just another patient with over a decade of experience with this. NOT THE DOCTOR.

I’m horrified, angry, heartbroken. All of it.

I HAD TO FORMULATE THEIR CARE PLAN.

In this kind of injury the first couple days to a week is CRUCIAL and doing the wrong thing can lead to an injury that never heals and causes severe chronic pain and knock on deterioration.

A lot of the care someone is supposed to do for this injury goes against ALL common sense - NO SITTING for 48 hours, NO WALKING, stool softeners, lying on your stomach, REST, then as you gradually build up walking AVOID SITTING > STANDING and STOP when pain spikes.

All of these things are not at all common sense. ON TOP of that they should have had proper pain management BECAUSE it is WELL DOCUMENTED that untreated severe pain will cause central sensitization in the nervous system and those pain receptors may stay turned on forever

AND then there’s the treatment of the extensive soft tissue damage. WHICH LET ME TELL YOU is the worst part of this. Soft tissue damage is WAY worse than it sounds.

It is TEARS and in ligaments and muscles/fascia. It’s tendon injuries and more. Especially if it’s VISIBLE on CT!

That stuff is PAINFUL AS FUCK. It’s extremely common in EDS that we end up with way more soft tissue damage from injuries than is typical. THIS should have led to further investigation for EDS (my friend is already ‘suspected’)

And the worst part??? It’s REALLY hard to heal

Especially in EDS. I have soft tissue injuries from when I was a TEENAGER in my pelvis and lower back that are still a problem today. We get a LOT of scar tissue and often our ligaments never recover. GUESS WHAT LIGAMENTS DO.

They stabilize joints and ours are already unstable

SO what does this mean for my friend? Instability in their pelvis, spine, and ribs potentially for the rest of their life.

And the ONLY way we have a hope of healing and fixing it? A proper care plan and follow up with a Physio - this ER Doctor didn’t even mention this.

I’m sorry for the rant and caps all over. I’m just so fucking heartbroken.

THIS HAS TO STOP HAPPENING TO US.

It should be a hate crime. It’d absolutely rooted in discrimination & I’m tired of it. It can wreck our lives. It can PUSH us to the places they assume we’re already at

We’re treated like drug seekers years before we are, and then we get this kind of harmful denial of medical care which can leave us with life long PAINFUL repercussions. There is solid research this can lead people to opiate dependence and then worse.

I’m at a loss.

How can we fight this? I’ve been fighting this for a decade on my own front, and I do EVERYTHING in my power to equip my friend to avoid this because I couldn’t be there in a pandemic and this is what happens anyway.

I left patient advocacy work because it feels hopeless.

Thanks for listening. I’m so broken that I couldn’t be there for my friend to advocate in person. That I’ve had to craft their care plan and do the research. That I’ve had to try and cover the gaps in the lack of pain control they’ve been left with, thanks to the tools I have.

Heartbroken doesn’t cover it.

This has to stop happening to us. It has to.

Serious apologies for the lack of content warnings on this thread. That was irresponsible

I was in such a state I just ranted and I should have taken the time to calm down a bit and think about the impacts

I hope whoever reads this and is dealing with their own trauma is ok