Thanks for another interesting video and for letting me be part of it. I think the line you said “some doctors need to remember that patients are people too” really struck me. Often I’ve felt like I’m just being looked at as a diagnosis, a body - they forget that I’m a person with a life, family, feelings xx
Thank you so much for being a part of it Jenny it was so great to have you! Excatly, some doctors are great at it but others have no empathy for the person behind the diagnosis whatsoever.
I'm so sorry Penny that must be so frustrating. I really hope you're able to get the help you deserve soon. They shouldn't have diagnosed you without giving you some support! Hopefully the advice you can find from fellow patients will help for now x
I was trying to get tested for dysautonomia and the doctor said something really rude about EDS so I already didn't have the best impression. He had me wear a heart monitor but it only worked less than half the days it should have and I had some other problems so it was just useless information, but just off of that faulty information over the phone they told be they thought there was nothing wrong with me and that they imagined they wouldn't do anything when I came back in for my next appointment?! So I never went back to them because it gives me so much anxiety to have to argue with them. And this is after having been told by a different doctor years ago that I should just half a tilt table test and then all these other doctors won't let me.
I'm so sorry you're having to deal with this it's so bad that it is such a common experience. It's also rubbish how Doctors can be so hit and miss. I know it's really heard but you have to advocate for yourself in these situations and ask for what you want. If you need a tilt table test ask them for one and if they say no tell them you want it noted in your chart that they are refusing the test and they often change their tune. Spoons & Love & best of luck x
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So true and hard this thing of some doctors disbelieving us that have dysautonomia and saying it's just anxiety... difficult...
Its definitely tough! We must keep advocating for ourselves! x
Thanks for another interesting video and for letting me be part of it. I think the line you said “some doctors need to remember that patients are people too” really struck me. Often I’ve felt like I’m just being looked at as a diagnosis, a body - they forget that I’m a person with a life, family, feelings xx
Thank you so much for being a part of it Jenny it was so great to have you! Excatly, some doctors are great at it but others have no empathy for the person behind the diagnosis whatsoever.
Thank you for this video, Jenni. I was diagnosed 12 months ago with dysautonomia but thanks to COVID I still don’t have any help to manage it xxxxxxx
I'm so sorry Penny that must be so frustrating. I really hope you're able to get the help you deserve soon. They shouldn't have diagnosed you without giving you some support! Hopefully the advice you can find from fellow patients will help for now x
I was trying to get tested for dysautonomia and the doctor said something really rude about EDS so I already didn't have the best impression. He had me wear a heart monitor but it only worked less than half the days it should have and I had some other problems so it was just useless information, but just off of that faulty information over the phone they told be they thought there was nothing wrong with me and that they imagined they wouldn't do anything when I came back in for my next appointment?! So I never went back to them because it gives me so much anxiety to have to argue with them. And this is after having been told by a different doctor years ago that I should just half a tilt table test and then all these other doctors won't let me.
I'm so sorry you're having to deal with this it's so bad that it is such a common experience. It's also rubbish how Doctors can be so hit and miss. I know it's really heard but you have to advocate for yourself in these situations and ask for what you want. If you need a tilt table test ask them for one and if they say no tell them you want it noted in your chart that they are refusing the test and they often change their tune. Spoons & Love & best of luck x