I too have chronic illness. As you mentioned, every chronically ill person has a unique experience. For example, I don't think I've ever felt lonely but I acknowledge that you do. I appreciate that you've shared that because someone else will benefit from your writing.
The affect on our cognitive minds is such a good point, thank you. Mine just switches off completely. Out illnesses might be different but the outcomes can still be the same. Currently in bed now with a bad cold and painful legs so feeling sorry for myself! Thanks for reaching out.
I know Nanette and I have the same chronic illness, but our illness is different to each and everyone of us.
I really do feel for you Paul. When I learned I had MS, my world stopped. And then finally 3 years later I started doing shit again. But still I’m home by myself 8-10 hours of the day. Like joking committees on zoom for my union. But when those aren’t there my cognitive mind just stops. No motivation at all. I know my situation is completely different than you. But at least you have a dog. I don’t even have one of those. 🤭
The loneliness is its own kind of loss. Different from the physical decline, but just as real.
I’ve felt this with my own family. People who love me deeply, who show up consistently, who would do anything to help, and still, there’s a gap. They can’t feel what it’s like to live in my body. They can witness it, support it, grieve alongside it. But they can’t know it from the inside.
Even within the disability community, the isolation persists. I co-led a support group for people with the same chronic illness I have for over a year, hoping it would be a space for depth and shared vulnerability.
What I learned is that having a degenerative disease doesn’t automatically create understanding. The willingness to go deep, to sit with the hard stuff, that varies as much among people with chronic illness as it does anywhere else.
The loneliness isn’t about being unloved. It’s about the fundamental solitude of living in a body that operates by different rules.
You can be surrounded by care and still feel profoundly alone in the experience itself. Both things are true at once.
So true, thx for sharing. I lost basically all my friends since CV started. When people around me continued with their lives in early '22 LC crippled me. Happy New Year.. even though not sure atm where the "happy" could come from or how "new" could look like besides from more suffering.. sry for sounding overly negative rn..maybe its just the weather here killing me atm with minus degrees and high humidity.. thx for offering this community
Thank you for your transparency ☺️
I too have chronic illness. As you mentioned, every chronically ill person has a unique experience. For example, I don't think I've ever felt lonely but I acknowledge that you do. I appreciate that you've shared that because someone else will benefit from your writing.
The affect on our cognitive minds is such a good point, thank you. Mine just switches off completely. Out illnesses might be different but the outcomes can still be the same. Currently in bed now with a bad cold and painful legs so feeling sorry for myself! Thanks for reaching out.
Thanks Nanette, I really appreciate your comment.
I know Nanette and I have the same chronic illness, but our illness is different to each and everyone of us.
I really do feel for you Paul. When I learned I had MS, my world stopped. And then finally 3 years later I started doing shit again. But still I’m home by myself 8-10 hours of the day. Like joking committees on zoom for my union. But when those aren’t there my cognitive mind just stops. No motivation at all. I know my situation is completely different than you. But at least you have a dog. I don’t even have one of those. 🤭
Thank you for sharing and I'm sorry for the isolation.
Thanks Elizabeth, much appreciated
The loneliness is its own kind of loss. Different from the physical decline, but just as real.
I’ve felt this with my own family. People who love me deeply, who show up consistently, who would do anything to help, and still, there’s a gap. They can’t feel what it’s like to live in my body. They can witness it, support it, grieve alongside it. But they can’t know it from the inside.
Even within the disability community, the isolation persists. I co-led a support group for people with the same chronic illness I have for over a year, hoping it would be a space for depth and shared vulnerability.
What I learned is that having a degenerative disease doesn’t automatically create understanding. The willingness to go deep, to sit with the hard stuff, that varies as much among people with chronic illness as it does anywhere else.
The loneliness isn’t about being unloved. It’s about the fundamental solitude of living in a body that operates by different rules.
You can be surrounded by care and still feel profoundly alone in the experience itself. Both things are true at once.
Thanks David for this comment, beautifully put.
So true, thx for sharing. I lost basically all my friends since CV started. When people around me continued with their lives in early '22 LC crippled me. Happy New Year.. even though not sure atm where the "happy" could come from or how "new" could look like besides from more suffering.. sry for sounding overly negative rn..maybe its just the weather here killing me atm with minus degrees and high humidity.. thx for offering this community