I have hypermobile EDS (and other co-occurring conditions) and I had very similar experiences getting diagnosed. It's so disheartening to be treated this way when we are sick! Thank you for sharing your story, Annie, and thank you for all the disability rights advocacy work that you do. You're a real beacon of light in the disability/EDS community. And thank you to Taylor for helping us to hear Annie's story here x x
honestly annie is such a gem right? i have learned so much from her as an abled person and i **rage** that you have to put up with so much crap to get proper care
@@ItsRadishTime Yes, Annie is a very special person. I have followed her online for a few years now and her determination and compassion for others have been very inspiring to me. Chronically ill people deserve so much better care than we often get, but there are kind medical practitioners out there trying to educate themselves so they can really help up us. And in the UK the charity EDS UK and the Royal College of General Practitioners have worked together to design an online toolkit to help doctors to diagnose and treat EDS patients. Here's a link in case it helps someone: www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx
It's upsetting to hear just how much Annie had to fight to even get tested, much less treated, but it's brilliant how strong she was to advocate for herself again and again. (And kudos for the female physician who not only took time to educate herself in front of a patient, but also call out her colleague to take it seriously.) The medical system is hard to navigate as is, we don't need additional challenges for basic care. (P.S. Your b&w dress is absolutely killer. Perfect for rocking that summer goth aesthetic)
SUMMER GOTHS! And yeah, it is so messed up that Annie had to be that determined to be taken seriously-and that so many people have to fight that long or longer to get care. Medical providers should be just as determined to listen to stories like Annie's and learn from them.
I relate to this so much, having been through it with ME/CFS and POTS, etc. Getting worse and worse and worse, on the verge of tipping into very severe ME territory, and being gaslit and brushed off and insulted, but having to keep going back to "dickhead doctors" because that's where the help is. It was actually high-key traumatizing. Even now that I've proven just how much I know myself and my body, successfully "self-diagnosing" at least half a dozen conditions, knowing what would help, and managing my life and improving significantly despite medical professionals actively roadblocking my efforts, I still don't really get respect and now am gaslit about having been gaslit!! 😳 And what’s worse is that our stories are not in the least bit rare. 😭
woof. i hear doctors all the time get annoyed at self diagnosis but i don't know why doing some research and asking questions about what you've seen would be a bad thing? like, it's your own body and you know about it? is a doctor feeling powerful more important than you feeling at least some degree better? there's so much to fix.
2 of my fave TH-camrs together yay. Edit: So angry after watching this. It's awful how hard it is to even get tested sometimes. I went through something similar with having Mosaic Down Syndrome they didn't find it until a couple of years ago when I was in the hospital fighting for my life. Anyway I am so sorry that happened.
~fangirl squees of joy that two of my fave TH-camrs are together~ Omg, this is such an awesome video. Also, the medical industrial complex is the literal worst, and I want to burn it down. On that note, I love how the doctor who finally took Annie seriously (the fact it took so long and this is the reality for so many people makes me want to punch things) was the one person who didn't do what system encourages. She not only believed Annie, but she was also willing to educate herself. We need more people like her in the medical field. And now that that's out of the way, I'm so glad you two got to do this together. I got so excited to see the notification!
Thanks for the interesting video! Love this series. The music in the last few minutes was a little loud and it was hard to focus on what she was saying. Love the video tho :)
I have Bechtetew's disease. Before any doctor could tell me what was wrong with me actually I googled it myself and I was right! Naturally no one believed me as well... This part of the video sounded so familiar to me 😇
Loved sharing this time with you!! Thank you for being such a great listener and friend! 💖🙏
thank you for sharing your story w/me! and for the dope sweatshirt 🥰
I have hypermobile EDS (and other co-occurring conditions) and I had very similar experiences getting diagnosed. It's so disheartening to be treated this way when we are sick! Thank you for sharing your story, Annie, and thank you for all the disability rights advocacy work that you do. You're a real beacon of light in the disability/EDS community. And thank you to Taylor for helping us to hear Annie's story here x x
honestly annie is such a gem right? i have learned so much from her as an abled person and i **rage** that you have to put up with so much crap to get proper care
@@ItsRadishTime Yes, Annie is a very special person. I have followed her online for a few years now and her determination and compassion for others have been very inspiring to me.
Chronically ill people deserve so much better care than we often get, but there are kind medical practitioners out there trying to educate themselves so they can really help up us.
And in the UK the charity EDS UK and the Royal College of General Practitioners have worked together to design an online toolkit to help doctors to diagnose and treat EDS patients.
Here's a link in case it helps someone:
www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx
favs!
💖💖
It's upsetting to hear just how much Annie had to fight to even get tested, much less treated, but it's brilliant how strong she was to advocate for herself again and again. (And kudos for the female physician who not only took time to educate herself in front of a patient, but also call out her colleague to take it seriously.) The medical system is hard to navigate as is, we don't need additional challenges for basic care.
(P.S. Your b&w dress is absolutely killer. Perfect for rocking that summer goth aesthetic)
SUMMER GOTHS! And yeah, it is so messed up that Annie had to be that determined to be taken seriously-and that so many people have to fight that long or longer to get care. Medical providers should be just as determined to listen to stories like Annie's and learn from them.
I relate to this so much, having been through it with ME/CFS and POTS, etc. Getting worse and worse and worse, on the verge of tipping into very severe ME territory, and being gaslit and brushed off and insulted, but having to keep going back to "dickhead doctors" because that's where the help is. It was actually high-key traumatizing. Even now that I've proven just how much I know myself and my body, successfully "self-diagnosing" at least half a dozen conditions, knowing what would help, and managing my life and improving significantly despite medical professionals actively roadblocking my efforts, I still don't really get respect and now am gaslit about having been gaslit!! 😳 And what’s worse is that our stories are not in the least bit rare. 😭
woof. i hear doctors all the time get annoyed at self diagnosis but i don't know why doing some research and asking questions about what you've seen would be a bad thing? like, it's your own body and you know about it? is a doctor feeling powerful more important than you feeling at least some degree better? there's so much to fix.
2 of my fave TH-camrs together yay.
Edit: So angry after watching this. It's awful how hard it is to even get tested sometimes. I went through something similar with having Mosaic Down Syndrome they didn't find it until a couple of years ago when I was in the hospital fighting for my life. Anyway I am so sorry that happened.
i'm so sorry that you have a similar story. you shouldn't have to fight so hard to be heard.
~fangirl squees of joy that two of my fave TH-camrs are together~ Omg, this is such an awesome video. Also, the medical industrial complex is the literal worst, and I want to burn it down. On that note, I love how the doctor who finally took Annie seriously (the fact it took so long and this is the reality for so many people makes me want to punch things) was the one person who didn't do what system encourages. She not only believed Annie, but she was also willing to educate herself. We need more people like her in the medical field.
And now that that's out of the way, I'm so glad you two got to do this together. I got so excited to see the notification!
i don't think it is at all an accident that the one doctor who listened to annie was a woman.
this got my blood pressure all the way up, those fucknign doctors
RIGHT!?
Thanks for the interesting video! Love this series. The music in the last few minutes was a little loud and it was hard to focus on what she was saying. Love the video tho :)
Hey! Just so you know, the timing of the captions is really off for a good portion of this video. I'd appreciate it a lot if it was fixed!
should be fixed now! sorry!
@@ItsRadishTime Thank you so much!
I have Bechtetew's disease. Before any doctor could tell me what was wrong with me actually I googled it myself and I was right! Naturally no one believed me as well... This part of the video sounded so familiar to me 😇
ugh! I'm so sorry you weren't believed, but I'm glad you used the tools available to you to advocate for yourself.