This thread shares a 5-part series on the tough hospital experiences of people with disabilities and chronic illness. The author talks about fears, trauma, and how healthcare often fails to listen or believe patients. They emphasize the need for better awareness, advocacy, and community support to make healthcare safer and fairer for everyone.
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
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
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
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
Part 1: “Won’t Go to the ER Unless I’m Literally Dying”. /15
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
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. 🧵/1The 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 /2I 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! /3I’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. /4While 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. /5These 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. /6Our 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. /7My 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). /8Things 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 /9We 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. /11I 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. /10My 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 /12You 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! /13Let’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. /14Part 1: “Won’t Go to the ER Unless I’m Literally Dying”. /15Part 2: “Tips for Surviving a Hospital Trip when Chronically Ill”
/16Part 3: “How to Stay Covid Safe When in Hospital”
/17Part 4: “How to be an Effective Advocate for a Disabled Patient.”
/18Part 5 “My Most Dangerous Hospital Experience and How my Advocate Saved my Life”
/19Feel 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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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 ... 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 ... 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 ... 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 ... Part 1: “Won’t Go to the ER Unless I’m Literally Dying”. /15 ... Part 2: “Tips for Surviving a Hospital Trip when Chronically Ill”
/16 ... Part 3: “How to Stay Covid Safe When in Hospital”
/17 ... Part 4: “How to be an Effective Advocate for a Disabled Patient.”
/18 ... Part 5 “My Most Dangerous Hospital Experience and How my Advocate Saved my Life”
/19 ... 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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