Here it is! My 5 part series on the hospital experience as a disabled & chronically ill person.
It’s part of a new project I’ve been working on called The Disabled Ginger. I hope it will inform patients, caregivers & families about the difficulties we face accessing care. 🧵/1
The series began after I wrote a thread about how many of us won’t go to the ER unless we’re literally dying. The replies were heartbreaking - with many disabled people sharing stories of medical trauma that has left them unable to access healthcare /2
I began thinking about my own life and how many traumatic and dangerous experiences I’ve had in the hospital - as well as how much I’ve learned about how to advocate for myself and others.
With that - the series was born! /3
I’ve been sick most of my life to varying degrees. I’ve had periods of good function as well as times of prolonged hospitalization and months being bedridden. The last 5 years have been my most severe - having lost a decent amount of my independence. /4
While the severity of my illnesses has waxed and waned - one constant has always been the fear of going to the hospital. The terror of wondering whether I will be believed, psychologized, gaslit or harmed. The concern that I may very well come out worse than I went in. /5
These concerns are NOT unique to me. Most of us dealing with chronic illness feel the same way. The fact that we all have stories of trauma and gaslighting speak to the much bigger issue of ableism, misogyny and arrogance in medicine. /6
Our stories highlight how ill equipped western medicine is to treat people with complex chronic illnesses - as well as how few healthcare workers are taught to listen and believe their patients. How few understand the need to let us be an active participant in our care. /7
My personal experiences have ranged from the annoying (such as being asked if I’m fighting with my boyfriend during a severe POTS episode) to the reckless (leaving me alone in a janitor closet in the ER and forgetting I was there). /8
Things didn’t stop at annoying & reckless - they progressed to life threatening incompetence & woeful disregard for my health and safety. The final article - “My Most Dangerous ER Experience & How my Advocate Saved My Life” explains in detail how dangerous healthcare CAN be /9
I hope these articles can serve as a helpful introduction to the world of chronic illness and disabilities - as more and more people are joining our ranks everyday. Many are learning the hard way how difficult it is to access safe healthcare. /10
We have a lot of work to do with respect to educating patients, caregivers, healthcare workers and society at large about disabilities and patient rights. People need to know HOW to protect themselves and understand WHY it’s necessary. /11
My hope is that one day articles like these won’t be necessary. That hospital care will be safe & equitable for all. Unfortunately we’re far away from that goal - so I invite you to join me and learn how to support yourself or your loved ones through chronic illness /12
You don’t have to subscribe to read - but if you want to join me on my journey I would love to have you!
I’ve had the site up for a while as I’ve worked out the kinks & learned the ropes - so big thank you to everyone who’s read, given feedback & patiently waited for me! /13
Let’s keep building community, sharing stories and lifting each other up. Chronic illness is incredibly lonely - but it doesn’t have to be that way. There’s a great group of people online who can offer friendship, camaraderie, insight & support. Never be afraid to reach out. /14
Feel free to check out the other articles as well - I’ve written about the North Carolina mask ban, eugenics, gaslighting, ableism and more. I hope you like it! /end
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First off - this was devastating news at such a young age. I had stage 4 endometriosis, a tipped uterus, adenomyosis & other health issues that made pregnancy unlikely AND dangerous.
I was told in the event I became pregnant - they would have to recommend termination /2
Abortion would ALSO be risky to my health - though less risky than carrying a pregnancy to term.
Given the threat it seemed perfectly reasonable to request a more fail safe method of birth control (tubal ligation). /3
“No Olympic athletes are going to get Long Covid! It’s been 4 years and I don’t know anyone who has Long Covid!”
Yes. You do. Many people don’t disclose their disabilities for fear of ableist backlash. Others don’t connect the dots and may not realize they have Long Covid 🧵/1
The sad reality is that like many other chronic illnesses - Long Covid is poorly recognized and likely underdiagnosed. Many patients are dismissed with “anxiety” by doctors who don’t understand the nature of these conditions. /2
Others can’t afford to seek healthcare as they’ve already lost work/income due to being chronically ill. Some may not have safe access to healthcare due to lack of masking and clean air in hospitals. They KNOW they’re sick but can’t risk re-infection /3
I can’t stomach the Olympics anymore. I don’t remember any games with this many sick athletes, people unable to compete or underperforming/withdrawing. These are young folks in their prime - yet many are suffering due to Covid.
Do they understand the risk they’re taking? 🧵 /1
The Games, coaches and team doctors don’t seem interested in preventing infection or long term disability - and I question if the athletes understand the danger they’re in. Do they know it’s more than “just a respiratory virus”? /2
Do they know everyone is vulnerable to long term complications - that it’s not “only the elderly/disabled” who need to worry?
Do they know that pushing through when they’re sick drastically increases their odds of Long Covid? /3
“If you were REALLY that sick then it won’t matter if you get set back.”
I’m begging non disabled people to stop acting like we can’t possibly have a quality of life while severely ill. Like our baseline isn’t the most important thing to us.
My baseline is EVERYTHING 🧵/1
Sometimes people believe that if you’re severely ill - you must not have any quality of life and therefore you should be willing to push yourself. Willing to risk a setback.
They don’t understand the devastation setbacks cause or the realities of chronic illness. /2
I AM severe. I’m housebound & most days I’m bedbound. I need help to shower and sometimes to get to & from the bathroom. I can’t cook for myself and eating & swallowing is a challenge. To most people it would appear I have no quality of life. /3
It’s been a devastating few weeks. I’ve had injuries & setbacks plus fractured relationships, lost friends and the passing of more mask bans.
There are stories I’ve not shared out of fear …but I feel at a precipice. We must get loud. The time for holding back is over 🧵 /1
When I first began advocating for more Covid mitigations and better disability rights and awareness… I was nervous. My previous social media experience had been as a theatre journalist - so my followers knew me in that context. Seemingly healthy & high functioning /2
I didn’t know HOW to pivot to these new topics - nor did I know how it would be received. I was afraid of being judged, blocked & ridiculed by those who didn’t know I was disabled. Afraid they would walk away from me. /3
When it comes to mask bans - your political affiliation shouldn’t matter. These bans are a serious violation of bodily autonomy. We are STILL in a pandemic. Criminalizing masking WILL kill & disable people.
🧵 on Nassau County decision & why you should care /1
I’ve said it before & I will say it again - mask mandates and mask bans are VERY different things. These bans have support in large part because people are still angry at being forced to wear a mask during the early days of the COVID pandemic. /2
I will agree that mask mandates weren’t handled terribly well - but they were done with the intention of saving lives & were ALWAYS temporary. They were loosely enforced & you couldn’t be arrested for not masking. You could be asked to leave a space & arrested for refusal /3