A friend of mine managed to avoid COVID until this winter - when she was infected in a healthcare setting. She’s not recovered. She’s showing signs of Long Covid & POTS.
Spent last 3 weeks being worked up for cardiac issues - no one masked for her. Then she landed in ER
She had been dealing with nausea, vomiting and diarrhea for 4 days and had become tachycardic with a heart rate of 140. She was unable to keep fluids or electrolytes down & running a fever. But the way she had been recently treated was dissuading her from getting care
Prior to the ER visit she spent three weeks in hospitals & clinics. She had a ton of cardiac testing, lab work and procedures to determine if she has Long Covid. Despite the assumption being she’s chronically ill due to Covid - not ONE healthcare worker masked for her
She had to do a stress echo in her respirator while having breathing difficulties - and rather than offering to mask up she was repeatedly encouraged to take her mask off. They rolled their eyes at her for wanting to keep it on & marked her treadmill test “non compliant”
She’s had to repeatedly chase down results, beg for follow up appointments and even had a significant error go unnoticed & unaddressed over a weekend until she could connect with her GP. That error resulted in an infection which only worsened her baseline
At this point it’s becoming clear her care is being negatively impacted due to her need to avoid another Covid infection. She feels increasingly judged at each interaction & has to quietly endure the pain of being treated like a nuisance whose issues are all in her head.
By the time she needs the ER - she doesn’t even have the strength to ask them to mask. She’s vomiting and having a difficult time keeping her mask on - so she tries to go outside to vomit. No one offers her any help. She isn’t even surprised
She finally sees the doctor who says he will not consider giving her an IV until she removes her mask so he can assess how dry her mouth is. Her lab work was already back showing dehydration & electrolyte abnormalities. Why does she need to remove her mask?
She’s out of energy to argue - so she removes it & he proceeds to examine her from across the room. He was observing social distancing (which we know doesn’t work for airborne viruses) even though it meant he couldn’t SEE in her mouth. Yet he STILL made her remove her mask
Now that she’s been a good & compliant patient and removed her mask… they finally order IV fluids which bring her heart rate down (as we would expect if she’s developed POTS). Once her blood pressure is above 90/60 she’s discharged with no follow up care in place.
No explanation of what’s wrong with her, of why the fluids worked or how to take care of herself at home. I had to provide that information to her. She was genuinely shocked when they told her she was being sent home because NOTHING was resolved.
This is when I had to explain to her the realities of being chronically ill and needing the ER. You can’t expect them to manage the chronic condition. In their eyes the only thing that absolutely needed treatment was the dehydration because it created hypotension.
As soon as the hypotension was resolved - she was out the door. Nevermind the fact that she will probably be hypotensive again within 12 hours since her GI issues weren’t addressed and she wasn’t advised to consume electrolytes, salt pills or extra fluids.
Thankfully she has a good family doctor who was able to provide additional guidance - but MANY people do not. She could have just as easily bounced right back into the ER with the exact same problem. And our healthcare system is beyond overwhelmed. 1/2
This is the sad reality for most chronic illness patients. They end up learning the hard way that the hospital can’t really help them - and that their quality of life is going to be greatly reduced from this point forward.
Despite this friend bearing witness to my battle with POTS, MCAS & other chronic illnesses for years - I could tell she still expected things to go differently for her. She expected there to be a fix. She didn’t think accessing care would be this hard.
It’s hard to watch this happen to people I know and love - and it’s infinitely frustrating when it’s due to a covid infection that could have been avoided if more people cared to TRY. My friend actually DID try - mainly because she didn’t want to end up like me.
Yet despite being infected in a healthcare setting - she still can’t access any safe healthcare. They’re still not masking for her. And she’s slowly losing hope & becoming a shell of the person she was before her infection.
We need to put a stop to this. Patients have a RIGHT to safe healthcare. Disabled & high risk people have a RIGHT to safely exist in public spaces. Repeatedly encouraging someone with suspected Long Covid to remove their mask is cruel. Judging them for masking is wrong.
This behaviour is dissuading people from going to the hospital when they need to - while also creating more & more chronic illness patients as we infect & re-infect people. Abandoning covid mitigations has VERY real & VERY dire consequences.
If you can mask - wear a mask. Show solidarity with people like me and my friend. Learning to navigate the world as a newly disabled person is hard… it would be considerably less hard if we had more allies. If you’re a HCW and your patient is masking - wear one too.
If you ever find yourself in a situation like my friend did - please know you’re not alone. The disability community is with you in spirit & fighting for your right to safe healthcare. Fighting to reduce Covid spread. Fighting for disability justice. We aren’t giving up. 2/2
@broadwaybabyto my potassium levels got dangerously low from dehydration because I try not to go to the emergency room when I have vomiting incidents that go on for days, but if I try to tough it out for more than two days dehydration really shows up in my lab work, I’ve never had dangerously low potassium levels before this time it was bad.
But I don’t go until I absolutely have to because I don’t want to get infected there. I wear a respirator you can’t wear a respirator and vomit at the same time. And the last time I had to go there was definitely one person with Covid being treated in the hallway with me, and they were testing the lady behind me for Covid.
It’s been 2 1/2 weeks and I didn’t catch it, but I don’t know how, I got admitted and I was there for 48 hours in a private room where no one wear a mask except for the lady delivering my food.
It’s almost like they’re trying to kill us off isn’t it?
FWIW: if able, ALWAYS bring someone with you to the hospital and doctor appointments. Someone willing and able to fight them. Ideally, HCW will do their goddamn jobs and all your person will have to do is keep your spirits up and maybe play PokémonGo on their phones.
But they have to be aired and braced for battle.
I taught my kids, before every interaction w HCW: Take time before going in to armor up, get all your symptoms in a bullet point list, have an answer for what you want them to do about it, and have an answer for no I will not remove my mask.
“I’m dehydrated from vomiting for X hours. Z is the cause, my GP has it in my records. I need zofran and fluids. No, I won’t pull down my mask, I’m already sick. I don’t need to make it worse.”
And you can 100% tell them you will not remove your mask for any reason. They have no legitimate need to see inside your mouth. No is a complete sentence.
I’ve had nurses get really pissy with me when I refused to drop my mask for a thermometer. I told them you can take it in my armpit or get one of the forehead kind, but I’m not risking my life so you can take a temperature, esp when I’m not here because of a fever.
I’ve also had them try to remove my mask after they gave me ketamine (to try to stop esophageal spasms) and I was already short of breath. I told them no, but my partner had to stand up and forcefully tell them they would NOT remove my mask. My O2 was fine, 97%, and my struggle had nothing to do with my mask. He is a large intimidating man, thank fuck, because they backed down. Obviously, had my sats dropped, I would have.
He has learned the hard way that HCW may have a job where they theoretically are supposed to help us, but that doesn’t mean they will.
Idc. They can get as pissy as they want. We have the right to protect ourselves, according to the courts who declared asking HCW to mask is an ADA issue.
That’s why it’s so important to have someone with you who will fight them, if at all possible. I’ve talked with everyone still in my life about it, repeatedly. So if they end up in hospital and I can’t get there fast enough, they know they can AND SHOULD fight, if they’re able.
We don’t have to shut up and let them kill us. They succeed when we get too tired and sick to fight. That’s where stepping up for each other comes in.