When you're disabled - the decision of whether or not to go to the hospital is incredibly complex. When you have no choice but to go - there are ways to make it easier.
Love this. I've been a caregiver/ally and a lot of these things held true for us. Our go bag also had several pairs of clean underwear, and things to do during the interminable waits, like a novel and a notebook for writing. Clean underwear and socks were the most common thing I ended up needing to bring to the hospital, with decent outside food being a close second. The person I cared for had celiac (among other conditions) and hospital staff were terrible at remembering and maintaining the diet.
Also I feel you hard on that internal game of chicken with when to call it and go to the ER.
Thank you for sharing - I appreciate it! I’m glad the person you’re caring for has such a lovely supporter in you.
I generally can’t eat when I’m in the hospital - but back when I could they struggled with my dietary restrictions. Definitely good to have your own food and something to pass the time.
This is such great advice. I’d add that the system is so messed up, and there’s so little awareness around disability and so much ableism, that I have to actively remind myself that I can do everything right and still not have things go the way I need them to. Individuals can’t solve systemic problems. And it’s maddening and awful and I’m sorry others get caught in these traps, too.
It’s actually really validating to read that others go to drastic lengths to avoid the ER, thanks for those words ❤️
You’re so welcome - I found the comments validating because it just reaffirms how much we try to avoid that situation. I wish our hospitals had more disability & chronic illness training… because many of us have horror stories that no one should have to experience.
I'm a type 2 diabetic who gets frequent foot infections (I've had all my toes amputated because of it) and I get gaslit often because of pain in my feet. I have neuropathy, so I frequently have to explain that my baseline for pain is really low, so if I feel any in my feet, there's a serious problem. What would feel like an 8 for example feels like a 4 to me. I literally have to be LIMPING to realize there's a problem.
As far as packing a go bag, I have a system for if and when I get admitted: Clothes (usually pajamas, underwear and a change of clothes to leave when I'm sent home), pads for if I'm on my period, my phone, my tablet, any chargers for those items, and since the food is usually pretty bland (I almost always get put on a low sodium diet) I pack a set of salt and pepper shakers as well. I also carry a couple fidget toys to keep my hands busy. I also carry a separate list of medications since wifi in hospitals can be spotty even though I have MyChart.
Thank you for sharing! I wish more people would understand the way chronic illness can impact pain levels. I have neuropathy in my feet as well - and so I have to check them very carefully because I won’t notice an infection until it’s really bad. I’ve walked into the ER on a dislocated ankle. They didn’t believe me until they x-rayed it. Our bodies can be pretty incredible at times!
This all happens here too. Im often the one saying to patients that they need to go to ED as a community nurse. I try to prepare them.
I feel sad that people get dismissed for knowing their own body and what’s happening for them and or their children/family.
I want to teach students to have compassion and care. Not disrespect and dismissal. I don’t think one person can do that unfortunately-so I work with them one on one when I get the opportunity to mentor them.
I’m sorry you have this experience and many others do too.
I’m so sad for how far medical misogyny and patriarchy is affecting how people get treated.
If I had another skill I’d not work in the field. I’m in my 50’s and never want to go to hospital.
Even as a hcp I’ve been labeled as a drug seeker, when I couldn’t move at all, given Panadol when I needed the whistle, been dismissed because I work with complimentary medicine -chiro/natro/kinesiology to remain stable and avoid hospital. But it still happens(hospital admissions)-rarely but still enough to cause concern.
Thank you for telling your story. I started at part 5 first.
Thank you for reading and commenting with your perspective from within the system - it’s so valuable to hear. I hope you know what an incredible service you’re providing your patients.
I’m trying to do something similar and help people prepare for all the hurdles they’re likely to encounter when seeking emergency care. I hope one day it won’t be necessary - but we definitely aren’t there yet.
Having clear knowledge of your baseline and letting the healthcare staff know this is great advice.
I recently brought my mom to be admitted into the hospital for care (different than ER for sure) but establishing a rapport with the staff immediately always helps us. Connecting with them on some level so that they do see my mom as a whole person.
I have learned that I have to take a step back because I'm so on every little detail that it can be seem as untrustworthy. Trust comes hard for me in a hospital as I cared for my son when he had leukemia and many mistakes were made. Yes, they are human but that was my child. Momma bear came out often.
Excellent advice! I'm linking to this article, Kelly. Lots of useful tips and real-life experience burnt into your words. I hear you and agree. I recommend and tell all my single friends to identify an advocate regardless of their health status, but especially if they have an underlying chronic illness/condition. Women are often misdiagnosed as having a panic attack when it's a heart attack - an elephant-on-chest type of pain, tightness or any sharp pains NEED tests.
Thank you Victoria! Part 4 will be dedicated to advocacy & I will absolutely be linking to your publication. It’s such a great idea to make sure you’ve got someone lined up even if you’re not currently sick or disabled.
Kelly, have a look through my 'most popular' articles and see who's commented/liked - then you can choose to follow/subscribe to them. There are lots more lovely empathetic and inspiring people in our Carer Mentor community that you'll resonate with ;-)
Love this. I've been a caregiver/ally and a lot of these things held true for us. Our go bag also had several pairs of clean underwear, and things to do during the interminable waits, like a novel and a notebook for writing. Clean underwear and socks were the most common thing I ended up needing to bring to the hospital, with decent outside food being a close second. The person I cared for had celiac (among other conditions) and hospital staff were terrible at remembering and maintaining the diet.
Also I feel you hard on that internal game of chicken with when to call it and go to the ER.
Thank you for sharing - I appreciate it! I’m glad the person you’re caring for has such a lovely supporter in you.
I generally can’t eat when I’m in the hospital - but back when I could they struggled with my dietary restrictions. Definitely good to have your own food and something to pass the time.
This is such great advice. I’d add that the system is so messed up, and there’s so little awareness around disability and so much ableism, that I have to actively remind myself that I can do everything right and still not have things go the way I need them to. Individuals can’t solve systemic problems. And it’s maddening and awful and I’m sorry others get caught in these traps, too.
It’s actually really validating to read that others go to drastic lengths to avoid the ER, thanks for those words ❤️
You’re so welcome - I found the comments validating because it just reaffirms how much we try to avoid that situation. I wish our hospitals had more disability & chronic illness training… because many of us have horror stories that no one should have to experience.
I'm a type 2 diabetic who gets frequent foot infections (I've had all my toes amputated because of it) and I get gaslit often because of pain in my feet. I have neuropathy, so I frequently have to explain that my baseline for pain is really low, so if I feel any in my feet, there's a serious problem. What would feel like an 8 for example feels like a 4 to me. I literally have to be LIMPING to realize there's a problem.
As far as packing a go bag, I have a system for if and when I get admitted: Clothes (usually pajamas, underwear and a change of clothes to leave when I'm sent home), pads for if I'm on my period, my phone, my tablet, any chargers for those items, and since the food is usually pretty bland (I almost always get put on a low sodium diet) I pack a set of salt and pepper shakers as well. I also carry a couple fidget toys to keep my hands busy. I also carry a separate list of medications since wifi in hospitals can be spotty even though I have MyChart.
Thank you for sharing! I wish more people would understand the way chronic illness can impact pain levels. I have neuropathy in my feet as well - and so I have to check them very carefully because I won’t notice an infection until it’s really bad. I’ve walked into the ER on a dislocated ankle. They didn’t believe me until they x-rayed it. Our bodies can be pretty incredible at times!
I’m a nurse.
Im from Australia.
This all happens here too. Im often the one saying to patients that they need to go to ED as a community nurse. I try to prepare them.
I feel sad that people get dismissed for knowing their own body and what’s happening for them and or their children/family.
I want to teach students to have compassion and care. Not disrespect and dismissal. I don’t think one person can do that unfortunately-so I work with them one on one when I get the opportunity to mentor them.
I’m sorry you have this experience and many others do too.
I’m so sad for how far medical misogyny and patriarchy is affecting how people get treated.
If I had another skill I’d not work in the field. I’m in my 50’s and never want to go to hospital.
Even as a hcp I’ve been labeled as a drug seeker, when I couldn’t move at all, given Panadol when I needed the whistle, been dismissed because I work with complimentary medicine -chiro/natro/kinesiology to remain stable and avoid hospital. But it still happens(hospital admissions)-rarely but still enough to cause concern.
Thank you for telling your story. I started at part 5 first.
Thank you for reading and commenting with your perspective from within the system - it’s so valuable to hear. I hope you know what an incredible service you’re providing your patients.
I’m trying to do something similar and help people prepare for all the hurdles they’re likely to encounter when seeking emergency care. I hope one day it won’t be necessary - but we definitely aren’t there yet.
Having clear knowledge of your baseline and letting the healthcare staff know this is great advice.
I recently brought my mom to be admitted into the hospital for care (different than ER for sure) but establishing a rapport with the staff immediately always helps us. Connecting with them on some level so that they do see my mom as a whole person.
I have learned that I have to take a step back because I'm so on every little detail that it can be seem as untrustworthy. Trust comes hard for me in a hospital as I cared for my son when he had leukemia and many mistakes were made. Yes, they are human but that was my child. Momma bear came out often.
Daughter bear is often on the job!
It’s so important to understand your baseline and make sure your care team understands it too! I’m glad both momma and daughter bear are on the job!
Excellent advice! I'm linking to this article, Kelly. Lots of useful tips and real-life experience burnt into your words. I hear you and agree. I recommend and tell all my single friends to identify an advocate regardless of their health status, but especially if they have an underlying chronic illness/condition. Women are often misdiagnosed as having a panic attack when it's a heart attack - an elephant-on-chest type of pain, tightness or any sharp pains NEED tests.
Thank you Victoria! Part 4 will be dedicated to advocacy & I will absolutely be linking to your publication. It’s such a great idea to make sure you’ve got someone lined up even if you’re not currently sick or disabled.
Thanks, Kelly - you may want to check out Sue's publication and this article, a different angle, similar issues, hospital issues and she used the same image ;-) https://open.substack.com/pub/suelick/p/who-can-you-call-from-the-hospital?r=a9y7d&utm_campaign=post&utm_medium=web
Thank you! I’m still learning this app & how to find people to connect with - really appreciate the suggestion.
Kelly, have a look through my 'most popular' articles and see who's commented/liked - then you can choose to follow/subscribe to them. There are lots more lovely empathetic and inspiring people in our Carer Mentor community that you'll resonate with ;-)
That’s great - thank you for the tip! Getting there… slow and steady wins the race (with chronic illness and with learning a new platform!)
Don’t apologise, you’re very welcome, you can DM me via the chat for tips ;-) There’s no race, just lifting each other up and we all rise together
thank you for writing this up - very helpful and will share with our platform.