Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience.
It's terrifying, frankly, to think that as someone with currently 'moderate' ME/CFS I may not be able to count on the support of our health service - luckily my partner is medically-trained and could advocate for me, but the vast majority of people won't have this.
Thanks for what you're writing about here, it's really important!
Thank you for your kind words - I really appreciate it! I’m glad you’ve got a supportive (and medically trained) spouse to be your advocate. In Part 5 I will write about my most dangerous experience … which also opened my eyes to how quickly things can go sideways especially if you don’t have an effective advocate.
Thank you Victoria! It was heartbreaking cobbling together those examples from all over the world. One thing is clear - these are problems that have far reaching consequences and everyone should be aware of them. We all deserve an advocate by our side - just like we deserve better healthcare.
This used to happen a lot in emergency departments in Los Angeles. I remember Seeing the waiting room surveillance video of the cleaning staff sweeping around his body on the floor. I guess they thought he was sleeping?
I loved living in Southern California but as someone with a chronic illness I can’t live somewhere where you can sit in the ER for 24 hours and still not be seen. It’s pretty bad where I am now, but it was always like that
The wait times are terrible where I am - 15+ hours to be seen is not unusual and 3+ days to get admitted. I had to have an echocardiogram in a crowded ER hallway with only a very kind nurse trying to shield my chest with a curtain. We really must do better to preserve the dignity of people in these situations (and recognize what 3 days on a stretcher in an ER hallway can do to someone who’s already sick, elderly disabled etc)
That’s unbelievably awful. I came in by ambulance but I still had to get triaged in the waiting room and I think another woman’s daughter yelled at the triage staff for me because I was clearly in pain. She might’ve been talking about her mom but they told her to go worry about her guest so I assume she was talking about someone else and I was the only her that appeared to be struggling out there.
Thank you for this helpful article. I’ve recently been asked to be an advocate for a family member but I have very little experience with hospitals, chronic illness, and disabilities. I’m going to share this with her and hopefully together we can come up with a good plan!
I’m so glad you found it helpful and I wish you all the best in advocating for your friend/loved one. It’s an important role and I hope my stack helps give you a place to start!
So I am back at the hospital again, I waited a couple days to go but last time I waited my potassium got dangerously low so I went. I’ll be here until at least tomorrow.
I was really freaked out because I was getting the pain medication they usually give me and it wasn’t working and I was terrified that things were really really wrong. Then I found out they were giving me half the dose they normally give me and when I went upstairs they even cut it down more so of course it wasn’t working.
Aren’t they supposed to tell you if they change the dose or the medication. After getting admitted when they gave me 0.2 mg when my normal dose is 1 mg I was convinced the nurse diverted my drugs I was so freaked out.
Then they tried to tell me I can’t have phenergan because it’s Compazine and I list a compazine Allergy. I was so confused, it’s actually promethazine.
So that was my second struggle, then they tried to put me in a room with someone else telling me they wouldn’t put me in a room with someone with Covid and I laughed and I said I could have Covid you have no idea you don’t test anybody around here. Then she told me none of them have respiratory symptoms. I said yeah I believe the latest strains are more G.I. symptoms (which is why I am here, I’m sure that 71-year-old woman doesn’t want me in her room either) So I told them I would rather go home. I told them my life was destroyed by mono and I do not consent to having more viruses in my body, so I can just go home it’s fine.
They found me a private room. I felt a little bad being so pushy about it but the young man who wheeled me down to this room told me I did a good job advocating for myself and that made me feel better. Because I’m not particularly good at it I tend to go a little too hard because I spent the first half of my life not advocating for myself enough. But it worked.
I’m so sorry that you’re in the hospital - I know how hard you try to avoid going! Good job advocating for yourself & getting what you need to stay as safe as possible. I sincerely hope it’s a smoother stay from this point on.
I have had to advocate for a few family members in the hospital. One was a lung cancer patient for nearly 2 years - my husband. I kept a detailed book with copies of all of his test results, medications, chemo doses and results - you name it. It was super useful in helping me and the providers prevent mistakes and manage his pain towards the end.
Another was a family member who is allergic to one common formulation of painkiller, but not another formulation. If I hadn’t happened to be there to stop them when they came in with the wrong one for her, it could’ve gone badly.
Even the best & kindest providers are often overworked and have many patients to remember & care about. Having a support person whose focus is 1 patient - you - is invaluable!
Thank you for doing that - it’s such an important role and we need more people who are willing to fill it! I did it for my Mom when she had cancer - and I’m blessed to have a number of friends at the ready to help me.
I’ve actually stopped a nurse from giving me a drug I was allergic to - as well as a liver toxic dose of another medication. As you say mistakes happen to everyone and that’s why an extra set of eyes and ears is SO important.
Thank you so much for your kind feedback - I’m really glad you found it helpful. The hospital series was a difficult thing to write but I believe it’s important since being in hospital is a very different experience when you’re disabled.
Pleased to discover your valuable writing!
It's terrifying, frankly, to think that as someone with currently 'moderate' ME/CFS I may not be able to count on the support of our health service - luckily my partner is medically-trained and could advocate for me, but the vast majority of people won't have this.
Thanks for what you're writing about here, it's really important!
Thank you for your kind words - I really appreciate it! I’m glad you’ve got a supportive (and medically trained) spouse to be your advocate. In Part 5 I will write about my most dangerous experience … which also opened my eyes to how quickly things can go sideways especially if you don’t have an effective advocate.
Everyone needs to read this, an insightful VERY real description of the state of health systems. This mirrors the situation in the UK.
I would urge anyone to think about their parents and elderly frail relatives/friends too
Also, don't assume 'this won't happen to me' - this was posted on BBC news yesterday: https://www.bbc.co.uk/news/articles/cy792l78w2jo
Thank you Victoria! It was heartbreaking cobbling together those examples from all over the world. One thing is clear - these are problems that have far reaching consequences and everyone should be aware of them. We all deserve an advocate by our side - just like we deserve better healthcare.
This used to happen a lot in emergency departments in Los Angeles. I remember Seeing the waiting room surveillance video of the cleaning staff sweeping around his body on the floor. I guess they thought he was sleeping?
I loved living in Southern California but as someone with a chronic illness I can’t live somewhere where you can sit in the ER for 24 hours and still not be seen. It’s pretty bad where I am now, but it was always like that
The wait times are terrible where I am - 15+ hours to be seen is not unusual and 3+ days to get admitted. I had to have an echocardiogram in a crowded ER hallway with only a very kind nurse trying to shield my chest with a curtain. We really must do better to preserve the dignity of people in these situations (and recognize what 3 days on a stretcher in an ER hallway can do to someone who’s already sick, elderly disabled etc)
That’s unbelievably awful. I came in by ambulance but I still had to get triaged in the waiting room and I think another woman’s daughter yelled at the triage staff for me because I was clearly in pain. She might’ve been talking about her mom but they told her to go worry about her guest so I assume she was talking about someone else and I was the only her that appeared to be struggling out there.
Thank you for this helpful article. I’ve recently been asked to be an advocate for a family member but I have very little experience with hospitals, chronic illness, and disabilities. I’m going to share this with her and hopefully together we can come up with a good plan!
I’m so glad you found it helpful and I wish you all the best in advocating for your friend/loved one. It’s an important role and I hope my stack helps give you a place to start!
So I am back at the hospital again, I waited a couple days to go but last time I waited my potassium got dangerously low so I went. I’ll be here until at least tomorrow.
I was really freaked out because I was getting the pain medication they usually give me and it wasn’t working and I was terrified that things were really really wrong. Then I found out they were giving me half the dose they normally give me and when I went upstairs they even cut it down more so of course it wasn’t working.
Aren’t they supposed to tell you if they change the dose or the medication. After getting admitted when they gave me 0.2 mg when my normal dose is 1 mg I was convinced the nurse diverted my drugs I was so freaked out.
Then they tried to tell me I can’t have phenergan because it’s Compazine and I list a compazine Allergy. I was so confused, it’s actually promethazine.
So that was my second struggle, then they tried to put me in a room with someone else telling me they wouldn’t put me in a room with someone with Covid and I laughed and I said I could have Covid you have no idea you don’t test anybody around here. Then she told me none of them have respiratory symptoms. I said yeah I believe the latest strains are more G.I. symptoms (which is why I am here, I’m sure that 71-year-old woman doesn’t want me in her room either) So I told them I would rather go home. I told them my life was destroyed by mono and I do not consent to having more viruses in my body, so I can just go home it’s fine.
They found me a private room. I felt a little bad being so pushy about it but the young man who wheeled me down to this room told me I did a good job advocating for myself and that made me feel better. Because I’m not particularly good at it I tend to go a little too hard because I spent the first half of my life not advocating for myself enough. But it worked.
I’m so sorry that you’re in the hospital - I know how hard you try to avoid going! Good job advocating for yourself & getting what you need to stay as safe as possible. I sincerely hope it’s a smoother stay from this point on.
Always reading your articles with interest. Thank you for sharing such insight.
Thank you for reading! Hopefully it helps people recognize the need for an advocate (and helps advocates prepare to show up for the patient).
I have had to advocate for a few family members in the hospital. One was a lung cancer patient for nearly 2 years - my husband. I kept a detailed book with copies of all of his test results, medications, chemo doses and results - you name it. It was super useful in helping me and the providers prevent mistakes and manage his pain towards the end.
Another was a family member who is allergic to one common formulation of painkiller, but not another formulation. If I hadn’t happened to be there to stop them when they came in with the wrong one for her, it could’ve gone badly.
Even the best & kindest providers are often overworked and have many patients to remember & care about. Having a support person whose focus is 1 patient - you - is invaluable!
Thank you for doing that - it’s such an important role and we need more people who are willing to fill it! I did it for my Mom when she had cancer - and I’m blessed to have a number of friends at the ready to help me.
I’ve actually stopped a nurse from giving me a drug I was allergic to - as well as a liver toxic dose of another medication. As you say mistakes happen to everyone and that’s why an extra set of eyes and ears is SO important.
This is such a powerful essay or should I say Manuel on how to be an advocate and part of what is wrong with our medical system.
I’m with you all the way
I’m tired right now, but I am going to read more as I have to adult women with disabilities and I’ve written an entire book about it
There’s so much to say and do
You are doing a wonderful service thank you so much
Thank you so much for your kind feedback - I’m really glad you found it helpful. The hospital series was a difficult thing to write but I believe it’s important since being in hospital is a very different experience when you’re disabled.
For sure
Excellent advice - thank you
Thank you for reading and I’m glad you found it helpful!