She has several conditions, but since she doesn’t have a job, her insurance sucks, which has made it a lot more difficult to get government assistance. She declined quickly over the last several years, so she went from having a stable job that paid much more than mine to suddenly being completely unable to manage her daily life. For the first year of unemployment, a lot of time was wasted with medical professionals who thought she just needed to work out her legs more and get back to work. It has been an adjustment, but we’re working on it.
It is somewhat of a long process of seeing loads of doctors, trying to get things on paper that qualify for disability, and then applying and seeing if it sticks. Because many of her problems are exceedingly rare and poorly understood, it has not been easy to get definitive diagnoses that can easily be used to get long term disability.
She also got bamboozled by some medical credit companies before she met me, so we’re dealing with a few lawsuits trying to resolve that. Plus, she was in a car accident recently which has set her back. I guess my point is that we’ve been working on getting her government assistance, but there has been an overwhelming amount of things going on, and the process is slow.
I say she’s bendy and elegant because those are the positives. She is also in constant pain, suffers from mental issues, and we’re currently finding out if she will have a short lifespan from the toll on her internal organs. Within all that suffering though are also unique opportunities for trust and connection that I’ve never experienced in an able bodied relationship—there is a beautiful intimacy in the act of carrying someone up a flight of stairs or feeding them when their hands won’t work. The way she looks at me, I never have to feel insecure—that lady loves me and lets me know it every moment of the day.
There is a lot of suffering that comes with chronic genetic conditions, and it has completely reframed how I see life. That said, under all that disability is a really unique, intelligent, and talented person who I have fallen in love with. She is the kind of person who is 100% worthy of help, and though I don’t know how we’ll end up getting there, we are focused on finding the right support so we can live a life together and so that she can reach her potential despite her setbacks.
Ehlers Danlos Syndrome? Disabled? Does the government pay people to be on permanent vacation for being bendy & elegant?
She has several conditions, but since she doesn’t have a job, her insurance sucks, which has made it a lot more difficult to get government assistance. She declined quickly over the last several years, so she went from having a stable job that paid much more than mine to suddenly being completely unable to manage her daily life. For the first year of unemployment, a lot of time was wasted with medical professionals who thought she just needed to work out her legs more and get back to work. It has been an adjustment, but we’re working on it.
It is somewhat of a long process of seeing loads of doctors, trying to get things on paper that qualify for disability, and then applying and seeing if it sticks. Because many of her problems are exceedingly rare and poorly understood, it has not been easy to get definitive diagnoses that can easily be used to get long term disability.
She also got bamboozled by some medical credit companies before she met me, so we’re dealing with a few lawsuits trying to resolve that. Plus, she was in a car accident recently which has set her back. I guess my point is that we’ve been working on getting her government assistance, but there has been an overwhelming amount of things going on, and the process is slow.
I say she’s bendy and elegant because those are the positives. She is also in constant pain, suffers from mental issues, and we’re currently finding out if she will have a short lifespan from the toll on her internal organs. Within all that suffering though are also unique opportunities for trust and connection that I’ve never experienced in an able bodied relationship—there is a beautiful intimacy in the act of carrying someone up a flight of stairs or feeding them when their hands won’t work. The way she looks at me, I never have to feel insecure—that lady loves me and lets me know it every moment of the day.
There is a lot of suffering that comes with chronic genetic conditions, and it has completely reframed how I see life. That said, under all that disability is a really unique, intelligent, and talented person who I have fallen in love with. She is the kind of person who is 100% worthy of help, and though I don’t know how we’ll end up getting there, we are focused on finding the right support so we can live a life together and so that she can reach her potential despite her setbacks.