My heart goes out to each and every one of us in this video, and everyone in the comments, too. The struggle and the gaslighting involved in so many of these stories is no joke. I actually had to tell off a rheumatologist in the process of my getting diagnosed, because I had a similar look-you-in-the-eye, tell-you-it's-a-you-problem-and-not-a-body-problem experience as you did, Jenni. More videos like this can really, really help. Thank you SO MUCH, Jenni (and Ian!) for all your hard work in making this. I swear content like this can help change the future.
Thank you so much Robin and thank you for sharing your story too, it's horrible how similar they all are. I really hope we can somehow bring about some change.
Thankyou Jenni and everyone in this video.. I am diagnosed with hsd, my rhumatologist has told me it's most likely eds but won't do anything further to investigate or diagnose me.. This has all been so helpful, wishing you all the best x
Just me, sitting in my room and crying, while watching these videos. I got my diagnose 2 months ago, but my journey started a lot earlier. I see myself in so many of you. And I grief. I'm only at the beginning of being Zebra and even though I am grateful to finally know I am not making anything up, I feel super exhausted today. This constant fight is draining. Grateful for all you helping me to not give up.
This whole video honestly makes me so sad, I makes me wonder how many other people out there will never know that they have this. I feel like it's relevant to this video to point out that since I took part in this my diagnosis was changed from HSD to hEDS (there's a full video about it on my channel).
Thank you so much for making these videos Jenni and many thanks to all those who contributed. Whilst I don't have EDS or HSD myself, I do live with other, similar forms of chronic disorders including severe migraines, epilepsy and spinal pain. I do think that learning about other conditions is important in addition to knowing about your own and I have learned a lot about EDS & HSD from Jenni's page. Many thanks. Take care 👍 😊
Excellent as always. My journey to dx was basically my whole life- had symptoms from birth, brushed off and mis dx for years, finally put the puzzle 🧩 pieces together myself around 2016, took 2 years to see genetics, got formally dx in 2018... at age 50 plus. Crazy that any of us have to go thru this.
In France, they say the average time between the first symptoms and the diagnosis is 20 years. I have the "chance" to be in the average categorie since my first significative symptomes arrived when I was three years old, but my mom and my grandma have also EDS and I was just the first one in my family to have the diagnosis. Funny thing : often, doctors tend to diagnose fibromyalgia instead of EDS, but that was not my case because I had back problem with a scoliosis and the surgery about it, and every problem I ever had in my life was, for everyone included me and my family, because of my scoliosis or because I was capricious or a liar. Now, I have my diagnosis since 2017, but last year, in reeducation, a doctor did many clinical test and I actually have all the fibromyalgia point necessary for that diagnosis. We know that, in my case, it's just symptomes due to EDS and not actually a problem in itself, but I think funny that no doctors before think to test me for fibromyalgia, maybe I would have other help or technique, or even le fact that they would check my entire body instead of just my back would let them realize that I'm hypermobile, have many bruises, etc. but no, they never think about it. Maybe they didn't really care about my health, or they didn't like me that much, I don't know, but it's a little funny I think. I relate with the medical wandering and the difficulty... That's why I also try, to my level, to raise awareness, and I really hope that things will change soon. I live in Switzerland and I already see progress, more doctors knows at least a little about EDS and the symptoms, and when they don't, most of them are willing to really listen, propose things and do it my way instead of forcing me to do things that actually hurt me more. That's a big improvement that my diagnosis has bring in my life.
Thanks so much for sharing your story Cory. It's so difficult with fibromyalgia as it's so often a diagnosis for unexplained pain but if you leave people with that diagnosis when there actually are things explaining it no one ever looks any deeper. I do hope doctors learn more about it x
Hey, I can't tell you how helpful these types of videos are. I'm 27, I've had pain all my life. I finally got my doctor to listen to me at an appointment yesterday. He tried to fob me off with some painkillers then called me back after. He had definitely been away googling EDS (yay!). He then asked me to do blood work and book in another appointment then he said it looks like il need a rheumatology referal! Yayyyyy. Thanks again. Trying to learn all I can.
Thank you (all) so much again for sharing 💕 Jenni mentioned that comment from a doctor staying with her for 6 years and it just shows the impact of these things. I'm really struggling with medical trauma at the moment and feeling like I can't trust anybody. These stories of hope, after going through similar ordeals with gaslighting and being told we're lying or faking, are pretty much all I have to hold onto right now and I really can't thank you enough ❤ xx
I dont have EDS I was diagnosed with fibromyalgia aged 30. I started having symptoms aged 14. I was misdiagnosed with other things before it. I understand the grieving process. Since my diagnosis the condition has progressively got worse and that is what I struggle with the most.
My heart goes out to each and every one of us in this video, and everyone in the comments, too. The struggle and the gaslighting involved in so many of these stories is no joke. I actually had to tell off a rheumatologist in the process of my getting diagnosed, because I had a similar look-you-in-the-eye, tell-you-it's-a-you-problem-and-not-a-body-problem experience as you did, Jenni.
More videos like this can really, really help. Thank you SO MUCH, Jenni (and Ian!) for all your hard work in making this. I swear content like this can help change the future.
Thank you so much Robin and thank you for sharing your story too, it's horrible how similar they all are. I really hope we can somehow bring about some change.
Thankyou Jenni and everyone in this video.. I am diagnosed with hsd, my rhumatologist has told me it's most likely eds but won't do anything further to investigate or diagnose me.. This has all been so helpful, wishing you all the best x
Oh my goodness thats so frustrating please keep fighting as there are management options out there loads of love x
This video is invaluable. Thank you so much for creating it and thank you to everyone who shared their story.
Aww I'm so glad thank you x
Just me, sitting in my room and crying, while watching these videos. I got my diagnose 2 months ago, but my journey started a lot earlier. I see myself in so many of you. And I grief. I'm only at the beginning of being Zebra and even though I am grateful to finally know I am not making anything up, I feel super exhausted today. This constant fight is draining. Grateful for all you helping me to not give up.
This whole video honestly makes me so sad, I makes me wonder how many other people out there will never know that they have this. I feel like it's relevant to this video to point out that since I took part in this my diagnosis was changed from HSD to hEDS (there's a full video about it on my channel).
I know it's so awful and also those people who are going through it totally alone x
Thank you so much for making these videos Jenni and many thanks to all those who contributed. Whilst I don't have EDS or HSD myself, I do live with other, similar forms of chronic disorders including severe migraines, epilepsy and spinal pain. I do think that learning about other conditions is important in addition to knowing about your own and I have learned a lot about EDS & HSD from Jenni's page. Many thanks. Take care 👍 😊
Thank you so much Jamie x
Excellent as always. My journey to dx was basically my whole life- had symptoms from birth, brushed off and mis dx for years, finally put the puzzle 🧩 pieces together myself around 2016, took 2 years to see genetics, got formally dx in 2018... at age 50 plus. Crazy that any of us have to go thru this.
Thank you so much for sharing your story Kat! It shouldnt be this difficult should it x
@@ChronicallyJenni no, it definitely should not be this hard getting a dx, considering what we/most of us have to live with daily.
In France, they say the average time between the first symptoms and the diagnosis is 20 years. I have the "chance" to be in the average categorie since my first significative symptomes arrived when I was three years old, but my mom and my grandma have also EDS and I was just the first one in my family to have the diagnosis. Funny thing : often, doctors tend to diagnose fibromyalgia instead of EDS, but that was not my case because I had back problem with a scoliosis and the surgery about it, and every problem I ever had in my life was, for everyone included me and my family, because of my scoliosis or because I was capricious or a liar. Now, I have my diagnosis since 2017, but last year, in reeducation, a doctor did many clinical test and I actually have all the fibromyalgia point necessary for that diagnosis. We know that, in my case, it's just symptomes due to EDS and not actually a problem in itself, but I think funny that no doctors before think to test me for fibromyalgia, maybe I would have other help or technique, or even le fact that they would check my entire body instead of just my back would let them realize that I'm hypermobile, have many bruises, etc. but no, they never think about it. Maybe they didn't really care about my health, or they didn't like me that much, I don't know, but it's a little funny I think.
I relate with the medical wandering and the difficulty... That's why I also try, to my level, to raise awareness, and I really hope that things will change soon. I live in Switzerland and I already see progress, more doctors knows at least a little about EDS and the symptoms, and when they don't, most of them are willing to really listen, propose things and do it my way instead of forcing me to do things that actually hurt me more. That's a big improvement that my diagnosis has bring in my life.
Thanks so much for sharing your story Cory. It's so difficult with fibromyalgia as it's so often a diagnosis for unexplained pain but if you leave people with that diagnosis when there actually are things explaining it no one ever looks any deeper. I do hope doctors learn more about it x
Hey, I can't tell you how helpful these types of videos are. I'm 27, I've had pain all my life. I finally got my doctor to listen to me at an appointment yesterday. He tried to fob me off with some painkillers then called me back after. He had definitely been away googling EDS (yay!). He then asked me to do blood work and book in another appointment then he said it looks like il need a rheumatology referal! Yayyyyy. Thanks again. Trying to learn all I can.
Thank you (all) so much again for sharing 💕
Jenni mentioned that comment from a doctor staying with her for 6 years and it just shows the impact of these things.
I'm really struggling with medical trauma at the moment and feeling like I can't trust anybody. These stories of hope, after going through similar ordeals with gaslighting and being told we're lying or faking, are pretty much all I have to hold onto right now and I really can't thank you enough ❤ xx
Honestly it will stay with me forever, people need to realise how damaging things like that can be for sure xx
I dont have EDS I was diagnosed with fibromyalgia aged 30. I started having symptoms aged 14. I was misdiagnosed with other things before it. I understand the grieving process. Since my diagnosis the condition has progressively got worse and that is what I struggle with the most.
Sending loads of spoons and love your way, you're definitely not alone x
Thank you please explain spoons theory to me. I dont understand it. My analogy refers to having a faulty/dead battery when I'm having a flare up.
Who was the neurologist in the hospital in London please
Does it go away as you get older? Not sure I’ve seen any middle aged or older people say they have EDS
No, it's genetic, if anything it gets worse
It doesn't get better. Older people just tend to not be diagnosed with it. It's still very hard for younger people to get diagnosed.