Liv, this is so gorgeous - and means the world to me. I hope you are surrounded by love, understanding and gentleness. Thank you for this, it gave me so much hope!
I’m so sorry you have to deal with this. 🥺 I didn’t know anything specific about EDS so I had to look it up. It sounds scary and painful.
I do understand the dilemma of living your life vs playing it safe from a health standpoint, though not in the exact same way as you. I have myotonic dystrophy, which is not similar to what you have, but often leads to the same result of mechanical injuries that lead to disability.
I was diagnosed at 40, after learning my siblings have it (our dad definitely had it, but was undiagnosed and passed from another illness). I haven’t had any serious injuries due to it yet, but it’s definitely starting to slow me down and I’ve had falls.
In terms of living my life to the fullest, it’s definitely a huge barrier to me being transgender. I came out only recently, after learning about the diagnosis, and mostl of my specialists have next to no info about how my condition will react to hormone replacement therapy, but the general consensus is that it will make things worse. So I’m presently stuck in a limbo of sorts trying to decide what to do.
I wish there was something I could do or say to help, but you’ve been struggling with this longer and harder than I have. I guess we just have to figure out and learn to live with our limits, play the long game, and do the best that we can.
Thank you for sharing this, Luca! I know how scary it can be to see a condition affect the people you love, all while dealing with the buried fear that it will come for you too. I think there is a good balance between doing the things we need to be preventative and stay healthy and living our lives! I certainly leaned too hard into denial and did not take care of myself the way I should have before this all started. What I’m trying to say is that nothing is destined! And even if you do become disabled, we can live rich and storied lives, as Famesick demonstrates. I wish you the best in figuring out what your body and soul need!
Liv, this is so gorgeous - and means the world to me. I hope you are surrounded by love, understanding and gentleness. Thank you for this, it gave me so much hope!
I’m so sorry you have to deal with this. 🥺 I didn’t know anything specific about EDS so I had to look it up. It sounds scary and painful.
I do understand the dilemma of living your life vs playing it safe from a health standpoint, though not in the exact same way as you. I have myotonic dystrophy, which is not similar to what you have, but often leads to the same result of mechanical injuries that lead to disability.
I was diagnosed at 40, after learning my siblings have it (our dad definitely had it, but was undiagnosed and passed from another illness). I haven’t had any serious injuries due to it yet, but it’s definitely starting to slow me down and I’ve had falls.
In terms of living my life to the fullest, it’s definitely a huge barrier to me being transgender. I came out only recently, after learning about the diagnosis, and mostl of my specialists have next to no info about how my condition will react to hormone replacement therapy, but the general consensus is that it will make things worse. So I’m presently stuck in a limbo of sorts trying to decide what to do.
I wish there was something I could do or say to help, but you’ve been struggling with this longer and harder than I have. I guess we just have to figure out and learn to live with our limits, play the long game, and do the best that we can.
Thank you for sharing this. *hugs*
Thank you for sharing this, Luca! I know how scary it can be to see a condition affect the people you love, all while dealing with the buried fear that it will come for you too. I think there is a good balance between doing the things we need to be preventative and stay healthy and living our lives! I certainly leaned too hard into denial and did not take care of myself the way I should have before this all started. What I’m trying to say is that nothing is destined! And even if you do become disabled, we can live rich and storied lives, as Famesick demonstrates. I wish you the best in figuring out what your body and soul need!
Beautifully written
beautiful piece, i love the way you described your experience of reading famesick, it's so clear and smart
Beautiful piece as always 💗