Awesome read Jo. I have shared it to our support group FB page and I hope that many will read it. It took me right back to those early days when acceptance was so difficult to come by in the light of "difficult" language from some HCPs. Fortunately, I had 2 HCPs who supported me, saved me from others 😀 and generally made my life liveable until I found my way again - with acceptance and a lot of help from others. Thank you so much!
Thanks so much, Mary! Oh yes, being 'difficult'. This term gets to me both on a personal level (being a difficult or 'challenging' patient) and at a more general level because people with chronic pain are often collectively referred to as difficult or challenging. We are not challenging! Chronic pain is challenging! We are just humans trying to figure out what is happening and what to do about it!
I am so glad you had the 2 health professionals who saved and supported you and helped you get back to living. My hope is everyone finds that, and it doesn't take as long as it took so many of us!! Love you my friend, thanks so much for sharing your experience here!!
Thanks so much, Blair! She knows I was writing it but I'm not sure if she's seen it yet. I know she's off writing right now and can't wait to see what she publishes next! I love Cass and her work. She's amazing.
Acceptance is hard. I'm still struggling with it. And it's me who isn't accepting myself. I don't agree with the individualistic/capitalistic reason as being one of the forces that makes it less easy to accept ourselves. Individualism is just a way of saying we have the right to our own decisions/lives/boundaries. But we still do live in a connected community and count on it. If we changed society it wouldn't make that much difference. If everyone accepted me I still wouldn't accept myself. Thank you for focusing on this topic though, very important and something I hope to be able to do one day.
Thanks so much for sharing your own thoughts and experiences here, japples. Acceptance is an incredibly nuanced topic, and self-acceptance can be really hard. It sounds like you'd like to come to a place where you are able to accept yourself, I hope that you find what you need that will help you get there.
Hi Jo, thank you for sharing your experience and reflections on chronic pain. I'm an osteopathy student and this has been a fascinating and thought-provoking read for me. Thanks so much!
Hi Lucy, I'm so happy to hear from you! Thanks for reading, and for sharing your kind and encouraging words, it means more to me than I can say! I have some new posts in the queue that I hope you will find interesting and thought provoking as well :)
Acceptance is a tricky one for many people and not even those who experience pain or a LTC.
For me acceptance gave me a green light to take action.
By the way we mentioned you the other day in the 1st Worldwide Pain SelfMgt Conference. You may not be on social media, but you’re not forgotten and often In thoughts.
The photo makes me think of when I realised I was on my own in this shit storm and had to just begin trudging through the blizzard by myself trusting my own survival skills.
The system definitely needs to change and it is changing slowly thanks to people like you. More people are listening to people with lived experience and we are being included in research. We have a very long way to go though.
As for acceptance...I can't accept the stigma and the loss of time, money and hope that accompanies every appt with a specialist or allied health except remedial massage (they tend to just rub the sore spot and listen which is great!). I can accept that I have an unpredictable condition - Cervical Dystonia - and that I have control over how I feel about it and my behaviour. If I wake up to high pain, I buckle up. If I wake up to low pain, I take the win. I try not to get really upset or super happy. Keeping an even keel about it all has worked really well for me. If it stops working I'll adapt again.
Happy New Year, Leah! It's so wonderful to 'see' you here! Thank you so much for sharing your thoughts and experiences, too, it means so much and is so valuable to learn from.
I love how you phrased what you can and cannot accept. I didn't even touch upon all the time, money and hope spent but I should have! That is totally unacceptable. Thanks for sharing what you can accept about your condition, and how you manage the changes from day to day.
That even keel is so important, I think. I often joke that it was some combination of pain science, Buddhist philosophy (where I learned to try to take a more neutral stance about my experiences - though practice is the key word here because even keel is not easy for me to embody!), and 19th century literature (where I recognized myself as part of a long thread of humanity who has suffered and tried to figure shit out) that helped me to come to a better place with my pain. (and nature of course!) I think I needed all three (four!) in the mix to get there/here.
'If it stops working I'll adapt again' - I LOVE THIS! And going to remind myself of it when I need to.
Thanks for continuing to read and for your kind words and support, Leah! I'm so grateful to 'know' you through this pain space. Thank you for all you do in your own advocacy and collaborative work, I wouldn't be able to do it without folks like you!
It's so wonderful to see you here, Emma! Thanks so much for sharing this here. I agree, the judgement is so difficult to deal with and so upsetting. I know I internalized so much of it for too long. Probably still internalize too much of it.
Awesome read Jo. I have shared it to our support group FB page and I hope that many will read it. It took me right back to those early days when acceptance was so difficult to come by in the light of "difficult" language from some HCPs. Fortunately, I had 2 HCPs who supported me, saved me from others 😀 and generally made my life liveable until I found my way again - with acceptance and a lot of help from others. Thank you so much!
Thanks so much, Mary! Oh yes, being 'difficult'. This term gets to me both on a personal level (being a difficult or 'challenging' patient) and at a more general level because people with chronic pain are often collectively referred to as difficult or challenging. We are not challenging! Chronic pain is challenging! We are just humans trying to figure out what is happening and what to do about it!
I am so glad you had the 2 health professionals who saved and supported you and helped you get back to living. My hope is everyone finds that, and it doesn't take as long as it took so many of us!! Love you my friend, thanks so much for sharing your experience here!!
Amazing that you’ve picked this up, Joletta. Does Cass know that you’ve written this? She’s doing great work
Thanks so much, Blair! She knows I was writing it but I'm not sure if she's seen it yet. I know she's off writing right now and can't wait to see what she publishes next! I love Cass and her work. She's amazing.
Acceptance is hard. I'm still struggling with it. And it's me who isn't accepting myself. I don't agree with the individualistic/capitalistic reason as being one of the forces that makes it less easy to accept ourselves. Individualism is just a way of saying we have the right to our own decisions/lives/boundaries. But we still do live in a connected community and count on it. If we changed society it wouldn't make that much difference. If everyone accepted me I still wouldn't accept myself. Thank you for focusing on this topic though, very important and something I hope to be able to do one day.
Thanks so much for sharing your own thoughts and experiences here, japples. Acceptance is an incredibly nuanced topic, and self-acceptance can be really hard. It sounds like you'd like to come to a place where you are able to accept yourself, I hope that you find what you need that will help you get there.
Hi Jo, thank you for sharing your experience and reflections on chronic pain. I'm an osteopathy student and this has been a fascinating and thought-provoking read for me. Thanks so much!
Hi Lucy, I'm so happy to hear from you! Thanks for reading, and for sharing your kind and encouraging words, it means more to me than I can say! I have some new posts in the queue that I hope you will find interesting and thought provoking as well :)
Many people living persistent pain or a long-term health condition sometimes think acceptance is about giving up, but it’s far from it.
Acceptance that pain / long term health condition will be an unwanted passenger in our lives seems to be the key. The key is not as big as we think.
For me when acceptance means that I am powerless over people, places and things and that I have to keep the focus on myself and recovery.
Thanks so much for sharing your thoughts and experience here, Pete! I love the sentence 'the key is not a big as we think.'
Hope you are doing well my friend! It's so wonderful to 'see' you here, especially now that I'm not on social media anymore. I miss ya!
Good to be here Jo.
Acceptance is a tricky one for many people and not even those who experience pain or a LTC.
For me acceptance gave me a green light to take action.
By the way we mentioned you the other day in the 1st Worldwide Pain SelfMgt Conference. You may not be on social media, but you’re not forgotten and often In thoughts.
Aw, thanks Pete!
Happy New Year! Great post Jo <3
LOVED the graphics and the snow photo.
The photo makes me think of when I realised I was on my own in this shit storm and had to just begin trudging through the blizzard by myself trusting my own survival skills.
The system definitely needs to change and it is changing slowly thanks to people like you. More people are listening to people with lived experience and we are being included in research. We have a very long way to go though.
As for acceptance...I can't accept the stigma and the loss of time, money and hope that accompanies every appt with a specialist or allied health except remedial massage (they tend to just rub the sore spot and listen which is great!). I can accept that I have an unpredictable condition - Cervical Dystonia - and that I have control over how I feel about it and my behaviour. If I wake up to high pain, I buckle up. If I wake up to low pain, I take the win. I try not to get really upset or super happy. Keeping an even keel about it all has worked really well for me. If it stops working I'll adapt again.
Thank you for continuing to write! :)
Happy New Year, Leah! It's so wonderful to 'see' you here! Thank you so much for sharing your thoughts and experiences, too, it means so much and is so valuable to learn from.
I love how you phrased what you can and cannot accept. I didn't even touch upon all the time, money and hope spent but I should have! That is totally unacceptable. Thanks for sharing what you can accept about your condition, and how you manage the changes from day to day.
That even keel is so important, I think. I often joke that it was some combination of pain science, Buddhist philosophy (where I learned to try to take a more neutral stance about my experiences - though practice is the key word here because even keel is not easy for me to embody!), and 19th century literature (where I recognized myself as part of a long thread of humanity who has suffered and tried to figure shit out) that helped me to come to a better place with my pain. (and nature of course!) I think I needed all three (four!) in the mix to get there/here.
'If it stops working I'll adapt again' - I LOVE THIS! And going to remind myself of it when I need to.
Thanks for continuing to read and for your kind words and support, Leah! I'm so grateful to 'know' you through this pain space. Thank you for all you do in your own advocacy and collaborative work, I wouldn't be able to do it without folks like you!
beautiful and authentic as usual Jo :-)
Thanks so much, Dershnee! Big hugs!
Wonderful though-provoking read, thank you Jo. The judgement (even from close friends) around persistent pain is so upsetting at times.
It's so wonderful to see you here, Emma! Thanks so much for sharing this here. I agree, the judgement is so difficult to deal with and so upsetting. I know I internalized so much of it for too long. Probably still internalize too much of it.
It's a tricky one! I love reading your blog. And seeing your photos! :)
Aww, thank you! 🥰
I'll let her know! :-)
Thanks! Just got an email from her so I know she's seen it :) I look forward to what comes next from her recent writings!!