When I had my hysterectomy, I was told recovery would be quick because I was young, fit & otherwise healthy.
They were wrong. The surgeon made an error and despite signs of post op bleeding, discharged me & went on vacation.
When I returned to the ER, I was ignored & gaslit
They told me it was “normal” to be in more pain 8 days after surgery than on day 1 (it’s not).
They said “what do you want us to do?”
They refused to run any tests beyond basic vitals, and scolded me for wasting their time
I knew something was wrong, but I was young and hadn’t yet learned how to advocate for myself.
The pain, swelling and bruising were getting worse with each passing day. I was dizzy, listless and had no appetite.
I slept ALL the time.
I was not getting better
I did what anyone would do, I went back to the ER. Surely this time they would take me seriously?
They didn’t. They made no attempt to hide their frustration that I had returned”. They made misogynistic comments about how “sensitive” I was & that being in pain was normal
I went home feeling completely dejected and disrespected, but also starting to gaslight myself.
Maybe it wasn’t that bad. Maybe this was normal pain. Maybe I did need to suck it up.
I tried to force myself to eat and go for light walks. I tried to play through the pain.
I was vomiting everything up and frequently collapsing from fatigue.
I could not suck this up.
My boyfriend had to carry me into the ER for a third attempt to get help
They did the exact same thing. Asked what we expected them to do. Told us the pain was normal. Refused to call a consult or run tests.
Thankfully my boyfriend believed me over them. He was certain if I went home, I wouldn’t make it through the night
He refused to let them discharge me. He told them, loudly and sternly, that he was not taking me home to die. That they needed to do their jobs.
They threatened to call security but he did not back down.
Thankfully a doctor overheard him and decided to look in and see if he could calm the situation.
When he saw me, half unconscious and white as a ghost, he immediately ordered tests. He told the triage staff not to call security and to take me into a private room
It turns out my boyfriend was right. Had I gone home that night, I wouldn’t have made it to morning.
I had a massive internal bleed and a giant infected abscess which had been growing since the surgeon sent me home.
I was rushed to another hospital for emergency surgery and given 50/50 odds of survival. I spent over a month in the hospital, developed a second hospital acquired infection, and needed 11 months to fully recover.
I survived due to luck & privilege. Had my boyfriend not believed me, I wouldn’t be here. Had he not been a white man? He likely would have been removed & I would have died
This is medical misogyny. They didn’t listen because I was a woman. They thought I was being dramatic
I tell this story because of what happened to Adriana Smith. A young black woman in Georgia who tried to get medical care for severe headaches, and was dismissed and gaslit instead.
She suffered brain death at home because no one believed her. Because of misogynoir.
To make matters worse, she’s been turned into a medical experiment because she was nine weeks pregnant and living in a state with an abortion ban. She’s on organ & tissue support being treated as a human incubator.
No care when alive & forced “care” when dead
Misogyny in medicine kills. It maims. It disables and traumatizes.
Women are frequently treated as hysterical and not given the medical care they require.
We often need a man to accompany us just to be taken seriously.
It’s not right and it needs to change
I will forever deal with medical PTSD because of what I went through, but at least I survived.
Adriana wasn’t so lucky, and no one’s survival should ever be based on luck, privilege or their ability to find a man to speak for them
I survived due to luck and privilege, Adriana didn’t.
What’s worse, due to abortion bans and dangerous forced birth policies, her body is kept alive on organ and tissue support without her family’s consent.
We must do better:
https://www.disabledginger.com/p/adriana-smith-misogyny-and-the-cruelty
#misogyny #misogynoir #ableism #patriarchy #abortion #mybodymychoice #disability #ableism #uspol
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
Since this has been my new social media home for a few weeks - figured I should pin an #Introduction post! I’m a former freelance theatre critic. Now #Disabled & interested in #LongCovid, #PostViralIllness, #mecfs , #POTS, #MCAS & more. Love #Theatre, #Britpop, #Sondheim, #Reading, #Writing and #Cows. Passionate about #DisabilityRights, #SocialJustice & more. #Toronto based but dreams of #Scotland.
Broadwaybabyto