I am in tears reading this. I didn’t realize how much progress I had made over the past four years - in each area you listed, I’ve grown in some way. Thank you for shining a light on that. I feel so uplifted, moved, and proud.
I found your work from Cathy Beederman's podcast and I'm so glad I did. Your thoughts on perfectionism and the pace of creation hit home for me, and they brought me back to your Substack. I loved this piece, and it came at the perfect time (on the heels of a new diagnosis). Thank you.
"That sounds lovely overall, but if I can't [insert accommodation here], I won't be able to come."
Setting expectations; asking for accommodations in advance; modifying a current environment; I'm getting better at this. It even needs to ne said to loving, supportive people who are close, at times. - Perhaps even to myself, at times.
It's a great list, and all of them are items in development. Thank you.
Thank you so much for sharing this, Dr. Talia. It was exactly what I needed to hear right now. I love how you included interdependence and the social model of disability. Something that especially resonated for me today was around believing your symptoms. Thanks as always for putting swirling emotions into words <333
I love this so much! For me, I measure my progress by my peace and acceptance, my non-judgmental self talk, and my gratitude for the things I still have.
I had an amazing therapist a few years ago who was also chronically ill and her advice to do things that help just 10% has always stuck with me. When I'm in the throes of bedridden pain, I can become so stuck thinking "nothing helps, woe is me, I'm trapped here forever"! But even doing something that helps 10% can be the amount of relief I need to find hope again on seeing the other side of a flare up.
It’s taken me years of practice but I’ve slowly - and intentionally - learnt to do all of these.
Sometimes it feels like chronic illness is part of our evolution. In many respects, it’s made me a better person. I wouldn’t have the depth of empathy for others or insight I have now. It’s definitely been an evolution of my being.
Thank you so much for sharing this list. <3
I could definitely work on all of these, but particularly asking for help, self compassion and prioritizing joy.
I think it might be time to create some new rituals around some of these things.
Love the idea of creating a ritual 💗
I am in tears reading this. I didn’t realize how much progress I had made over the past four years - in each area you listed, I’ve grown in some way. Thank you for shining a light on that. I feel so uplifted, moved, and proud.
Oh, Eve. I’m so glad this post found you. Your progress is amazing 💗
I found your work from Cathy Beederman's podcast and I'm so glad I did. Your thoughts on perfectionism and the pace of creation hit home for me, and they brought me back to your Substack. I loved this piece, and it came at the perfect time (on the heels of a new diagnosis). Thank you.
I’m so glad my work has resonated, Cher! Means a lot to me that you let me know. Best of luck navigating the waters of the new diagnosis
"I'll need to sit down when I'm there."
"I need to sit down, now."
"I need to put my feet up."
"I'll be needing to walk quite slowly."
"I need fresh air."
"I need a quieter space."
"I need a rest, now."
"That sounds lovely overall, but if I can't [insert accommodation here], I won't be able to come."
Setting expectations; asking for accommodations in advance; modifying a current environment; I'm getting better at this. It even needs to ne said to loving, supportive people who are close, at times. - Perhaps even to myself, at times.
It's a great list, and all of them are items in development. Thank you.
It sounds like you’ve really developed the ability to vocalize your needs
THIS! Thank you!!
This was such a great post! I need to work on number 4!
that’s a tough one!! You got this
Thank you so much for sharing this, Dr. Talia. It was exactly what I needed to hear right now. I love how you included interdependence and the social model of disability. Something that especially resonated for me today was around believing your symptoms. Thanks as always for putting swirling emotions into words <333
Thanks for reading, Adina <3 I’m glad this post found you today
This is absolutely SUPERB 💖 Thank you!
hi I love love LOVE this. thank you for laying this out so beautifully!
I'm glad it resonated!
I love this so much! For me, I measure my progress by my peace and acceptance, my non-judgmental self talk, and my gratitude for the things I still have.
I had an amazing therapist a few years ago who was also chronically ill and her advice to do things that help just 10% has always stuck with me. When I'm in the throes of bedridden pain, I can become so stuck thinking "nothing helps, woe is me, I'm trapped here forever"! But even doing something that helps 10% can be the amount of relief I need to find hope again on seeing the other side of a flare up.
This found me when I was ready to hear it 💖 thanks for providing these tools to help me reframe everything going on.
Something I can see improvements in is listening to/connecting with my body (Kristy Arbon's "Head Heart Body" meditation has been a big help 🙏).
Something I want to improve on is prioritizing joy.
It’s taken me years of practice but I’ve slowly - and intentionally - learnt to do all of these.
Sometimes it feels like chronic illness is part of our evolution. In many respects, it’s made me a better person. I wouldn’t have the depth of empathy for others or insight I have now. It’s definitely been an evolution of my being.
Thank you for this! It really validates much of how I’ve been feeling/thinking