Hello Rebecca, thank you for sharing so beautiful and creating a space for folks like us, and thank you @AnnMarieCross for inviting me to participate in the discussion.
I was brought to patient advocacy as a result of developing a debilitating version of Long Covid. I was previously a very high functioning, active, vivacious person and then I had a major PEM crash and spent the next 5 — 9 months housebound/bed bound and have been trying to climb my way out since. I am still only generously in the moderate cateogory.
The thing is, a lot of my friends got sick around the same time that I did but I happened to have more cognitive functioning — so as I was fighting my way through the medical system to get care, I was also doing the same for my friends, and other people I met along the way. I learned that this was a profession, something I could part time and still earn enough to pay the basic bills, and utilize my hard earned knowledge.
I struggle with many aspects of this job, as well as having a job period. I find the work that I do to be incredibly meaningful, but also emotionally and physically exhausting.
Seeing as I specialize in my own disease, that means I spend nearly every day looking at what the worst possible version of my disease looks like, which feels sometimes like staring worse-than-death in the face. I wonder sometimes if I've made the right choice — the choice to continue to try to be financially independent, to work/have a career, whereas I could opt out. I could change my living situation to be cheaper, use the SSDI that I have been so lucky to have been awarded, and just «retire» and focus on enjoying life with the little energy I have. It would be a financially more difficult life to be sure, but maybe it would be the right choice? Maybe it would be better for my health? I would still definitely be helping the friends and people in my life, but not to the extent that I do so now.
I think generally, many of us struggle with burn out, compartmentalization, etc. I don't know how people in the health field do this. I generally am pretty good at not letting things get to me. But people in my life who care for me and love me and ask me how my day was at work, and I stumble. Because how am I supposed to share that I had to tell someone that they probably should not be walking anymore and need a wheelchair, and oh, btw, there are no medical providers who are available to help?
Anyways. This was a pretty raw and vulnerable piece, and just want to say thanks for listening.
Hello Rachel! I think I responded to your post on FB, but haven't had a chance to reach out — the patient advocacy company that I work for, Norbella Health, specializes in EDS.
You can check out our team here:
www.norbellahealthadvocates.com/team
I am about to go on leave, so I'll circle back around to you when I get back, but Caroline Kim, the founder or Maggie Buckley (she's an EDS powerhouse, has been involved in many different EDS organizations over time) would be great people to connect with to discuss forwarding potential clients.
I was brought to patient advocacy as a result of developing a debilitating version of Long Covid. I was previously a very high functioning, active, vivacious person and then I had a major PEM crash and spent the next 5 — 9 months housebound/bed bound and have been trying to climb my way out since. I am still only generously in the moderate cateogory.
The thing is, a lot of my friends got sick around the same time that I did but I happened to have more cognitive functioning — so as I was fighting my way through the medical system to get care, I was also doing the same for my friends, and other people I met along the way. I learned that this was a profession, something I could part time and still earn enough to pay the basic bills, and utilize my hard earned knowledge.
I struggle with many aspects of this job, as well as having a job period. I find the work that I do to be incredibly meaningful, but also emotionally and physically exhausting.
Seeing as I specialize in my own disease, that means I spend nearly every day looking at what the worst possible version of my disease looks like, which feels sometimes like staring worse-than-death in the face. I wonder sometimes if I've made the right choice — the choice to continue to try to be financially independent, to work/have a career, whereas I could opt out. I could change my living situation to be cheaper, use the SSDI that I have been so lucky to have been awarded, and just «retire» and focus on enjoying life with the little energy I have. It would be a financially more difficult life to be sure, but maybe it would be the right choice? Maybe it would be better for my health? I would still definitely be helping the friends and people in my life, but not to the extent that I do so now.
I think generally, many of us struggle with burn out, compartmentalization, etc. I don't know how people in the health field do this. I generally am pretty good at not letting things get to me. But people in my life who care for me and love me and ask me how my day was at work, and I stumble. Because how am I supposed to share that I had to tell someone that they probably should not be walking anymore and need a wheelchair, and oh, btw, there are no medical providers who are available to help?
Anyways. This was a pretty raw and vulnerable piece, and just want to say thanks for listening.
You can check out our team here:
www.norbellahealthadvocates.com/team
I am about to go on leave, so I'll circle back around to you when I get back, but Caroline Kim, the founder or Maggie Buckley (she's an EDS powerhouse, has been involved in many different EDS organizations over time) would be great people to connect with to discuss forwarding potential clients.