As someone who is often solutions oriented when it comes to my desire to help loved ones, it's always a helpful reminder to hear that just listening and validating someone's experience can be the most helpful sometimes. Thanks, as always, for the effort and thoughtfulness of your writing!
Thank you for this reflection! As a long-time teacher, I often want to create a dialectical, learning dynamic in conversation. I like learning as much as sharing about human experience. From what you've offered, I can see some of the limitations in trying to approach illness conversations as a gathering info/sharing dynamic. Simply listening actively seems like a better way to go in these conversations.
This is one of those perfect timing "coincidences" (quotes because I don't believe in coincidence) that came just when I needed it.
Stumbled across while looking for something else. Obviously fell across what I really needed.
I've been chronically ill with Long Covid for 5 years. All issues/symptoms very atypical, even those that can be "named" when finally shows up on an MRI or lab report (trigeminal neuralgia or immunoaltered).
I have dear friends & family who care, love me & want to help (esp cause I love alone, single, no kids, family states away) & neither I nor they know how to interact/act/react at times anymore. I can send this to most of them & they will absorb it willingly & thankfully embrace it with love & relief. In their shoes, I would struggle too.
The hardest sometimes are those who are not the closest in my life & what still pushes my button the most is "But you don't look sick!". Knowing Itz not because they don't believe me but offered to make me feel better.....& Of course leaves me feeling worse. Invisible pain just makes it harder to physically interact with the world when I so desparatly want to.
Dealing with yet another physical issue & new doctors is often just as challenging. I feel empathetic & understand how challenging that can be but I can't take care of both their feelings AND mine & need the reminder that that is not my responsibility....tho Itz incredibly hard not to when interacting & having important dialogue re: proper treatment & new info.
I appreciate so much what you wrote, the caring wisdom & guidance (& that goes for all the comments too).
I'm outta spoons for the day but was so touched & helped had to thank y'all for helping me. A day at a time. ❤️🩹🙂↕️
Hi Beth Ann, thank you so much for sharing this. I’m really touched. I know how much energy it takes to write something like this on a low-spoon day. As a fellow long-hauler, what you said about feeling invisible and having so much trouble communicating with loved ones and doctors really hit me hard. The "but you don't look sick" has also been one of the hardest things for me and the folks I spoke to when writing this piece. I’m so glad this piece found you right when you needed it. I hope it makes your conversations even a tiny bit easier!
This is a great list. I know I need it as someone who supports those with chronic illness, but it is also amazing how often I have experienced people trying to say helpful things to me...and missing the mark. Such a helpful post.
So glad you had the experience of feeling seen by your friend and were able to get that release. Sometimes we don't realize what we're holding until we put it down and just let it, be. I really, really love what you wrote here, it's both empathetic and useful!
This post is so helpful Sage! I appreciate the clarity and guidance you provide for those of us who are not immediately experiencing chronic illnes and want to love and support those who are. With deep appreciation, Brooke
As someone who is often solutions oriented when it comes to my desire to help loved ones, it's always a helpful reminder to hear that just listening and validating someone's experience can be the most helpful sometimes. Thanks, as always, for the effort and thoughtfulness of your writing!
Thank you for this reflection! As a long-time teacher, I often want to create a dialectical, learning dynamic in conversation. I like learning as much as sharing about human experience. From what you've offered, I can see some of the limitations in trying to approach illness conversations as a gathering info/sharing dynamic. Simply listening actively seems like a better way to go in these conversations.
This is one of those perfect timing "coincidences" (quotes because I don't believe in coincidence) that came just when I needed it.
Stumbled across while looking for something else. Obviously fell across what I really needed.
I've been chronically ill with Long Covid for 5 years. All issues/symptoms very atypical, even those that can be "named" when finally shows up on an MRI or lab report (trigeminal neuralgia or immunoaltered).
I have dear friends & family who care, love me & want to help (esp cause I love alone, single, no kids, family states away) & neither I nor they know how to interact/act/react at times anymore. I can send this to most of them & they will absorb it willingly & thankfully embrace it with love & relief. In their shoes, I would struggle too.
The hardest sometimes are those who are not the closest in my life & what still pushes my button the most is "But you don't look sick!". Knowing Itz not because they don't believe me but offered to make me feel better.....& Of course leaves me feeling worse. Invisible pain just makes it harder to physically interact with the world when I so desparatly want to.
Dealing with yet another physical issue & new doctors is often just as challenging. I feel empathetic & understand how challenging that can be but I can't take care of both their feelings AND mine & need the reminder that that is not my responsibility....tho Itz incredibly hard not to when interacting & having important dialogue re: proper treatment & new info.
I appreciate so much what you wrote, the caring wisdom & guidance (& that goes for all the comments too).
I'm outta spoons for the day but was so touched & helped had to thank y'all for helping me. A day at a time. ❤️🩹🙂↕️
Hi Beth Ann, thank you so much for sharing this. I’m really touched. I know how much energy it takes to write something like this on a low-spoon day. As a fellow long-hauler, what you said about feeling invisible and having so much trouble communicating with loved ones and doctors really hit me hard. The "but you don't look sick" has also been one of the hardest things for me and the folks I spoke to when writing this piece. I’m so glad this piece found you right when you needed it. I hope it makes your conversations even a tiny bit easier!
This is really great advice. Everyone should be doing this.
Thanks, Sam!
This is a great list. I know I need it as someone who supports those with chronic illness, but it is also amazing how often I have experienced people trying to say helpful things to me...and missing the mark. Such a helpful post.
Glad it resonated!
Love it - allowing your presence in someone's life is an honor and expressing appreciation for the sharing is true company. THANK YOU!
Thanks, Joanna!
So glad you had the experience of feeling seen by your friend and were able to get that release. Sometimes we don't realize what we're holding until we put it down and just let it, be. I really, really love what you wrote here, it's both empathetic and useful!
Thank you so much, Lisa! Yeah, it was a really transformative conversation. Glad you got something out of the piece!
Always do! 🫶
This post is so helpful Sage! I appreciate the clarity and guidance you provide for those of us who are not immediately experiencing chronic illnes and want to love and support those who are. With deep appreciation, Brooke
Thank you, Brooke! I'm so glad you found it helpful.