This is absolutely beautiful. I would caution anyone watching this who knows someone with EDS not to assume that just because one of us can cope this well that all of us can if we "just put our mind to it." Symptom levels vary, as does access to health care, and access to doctors who actually listen.
Still couldn't find a specialist in EDS to tell me what I should not do and what should be good for me. I can remember every single symptom I had and still have since my early years. Only after 50 years old I started to learn about EDS and also autism. The trickiest part of my particular experience is not feeling pain in bone fractures or if my skin has been damaged. A lack in nociceptive pain - that's what I've learned by researching. I wish that this film had more than 10 hours... when she asked "what would you do if ..." I answered: - I already have and while remembering that, I felt like doing it again I still want to do it again (but now I'm a bit afraid of injuring myself) suddenly I see her body inside the ocean that's it 🌊 that's where I wish I was now although I already went to far .. ... ...
I completely agree! I know how lucky I am to have this quality of life, and how hard I fight to manage it. It might look easy in this video but I still live with chronic pain and many chronic health issues (despite the surfing and the climbing and everything else!). Thanks for your considerate thoughts and for watching
Merci pour cette video car je me reconnais, les douleurs, les blocages articulaires.... je suis contente de voir cette personne active et elle se bat pour faire de la photographie, car la maladie est invalidante.
Could you please share the supplements that helped you? So many of us are not fortunate enough to have a knowledgeable care team and have to find our own treatments. I’m so glad you found something that works for you. 💗
She seems incredibly able-bodied for someone with a disability. If you have EDS to such a small degree that you can do everything she is able to do, what exactly is the issue? I have EDS and I can't walk. This woman is fine, she's only disabled in name - she was literally jumping in the ocean at the end?! I haven't left my house for about 4 months. I have real EDS, not social media EDS. Videos like this make it hard for people like me to be taken seriously because people see the video and think EDS isn't a hard illness to deal with. For shame.
This is absolutely beautiful.
I would caution anyone watching this who knows someone with EDS not to assume that just because one of us can cope this well that all of us can if we "just put our mind to it."
Symptom levels vary, as does access to health care, and access to doctors who actually listen.
YES. I often feel completely dis _ abled.
Still couldn't find a specialist in EDS to tell me what I should not do and what should be good for me.
I can remember every single symptom I had and still have since my early years. Only after 50 years old I started to learn about EDS and also autism.
The trickiest part of my particular experience is not feeling pain in bone fractures or if my skin has been damaged. A lack in nociceptive pain - that's what I've learned by researching.
I wish that this film had more than 10 hours...
when she asked "what would you do if ..."
I answered:
- I already have
and while remembering that, I felt like doing it again
I still want to do it again
(but now I'm a bit afraid of injuring myself)
suddenly I see her body inside the ocean
that's it 🌊 that's where I wish I was now
although I already went to far ..
...
...
I completely agree! I know how lucky I am to have this quality of life, and how hard I fight to manage it. It might look easy in this video but I still live with chronic pain and many chronic health issues (despite the surfing and the climbing and everything else!). Thanks for your considerate thoughts and for watching
Thank you for sharing Rihanna’s beautiful story of strength and resilience. You’ve got a gift my friend.
Beautiful film of best person I know 🌞 Much love to R ❤️
Wonderfully beautiful film, I can’t believe it was shot in a day!
Love to see your story rihana!! Love your work! ❤❤❤
Merci pour cette video car je me reconnais, les douleurs, les blocages articulaires.... je suis contente de voir cette personne active et elle se bat pour faire de la photographie, car la maladie est invalidante.
A deep story and great video making skills, good job! :D
Could you please share the supplements that helped you? So many of us are not fortunate enough to have a knowledgeable care team and have to find our own treatments. I’m so glad you found something that works for you. 💗
Hey. Worth reaching out to Rhianna herself - instagram.com/rhiannamay_ 🙂
❤
She seems incredibly able-bodied for someone with a disability. If you have EDS to such a small degree that you can do everything she is able to do, what exactly is the issue? I have EDS and I can't walk. This woman is fine, she's only disabled in name - she was literally jumping in the ocean at the end?!
I haven't left my house for about 4 months. I have real EDS, not social media EDS. Videos like this make it hard for people like me to be taken seriously because people see the video and think EDS isn't a hard illness to deal with. For shame.