I sometime get flash backs to my back pain days when I was struggling and trying to make sense of what was happening and what was to become of me.
Healthcare professionals then had never heard of back pain self management and the whole system was geared up to either give me pain meds or send me on the carousel of healthcare.
Starting a back pain support group was to be my get out of jail card, but didn't know that at the time.
One speaker a clinical psychologist was going to get me back on track and get me on a pain management programme and you know what happened after that.
Why am I still doing what I do after 30yrs? Why are you and Keith, our brother do still what you do? I think it is been our destiny to be there for others, who have had or having problem with healthcare and showing/signposting them to another way of managing persistent pain.
Keep up the excellent work you do my friend and keep writing these excellent pieces
Thanks so much, Pete. All of us doing this work are standing on your shoulders my brother. You paved the way for us to get those invitations, to have seats at various tables, to have a chance to make a difference. I am forever grateful to you. Not just for your three decades of work, but also, and perhaps especially, for your unwavering support, encouragement, and friendship. I wouldn't be able to do what I do without the likes of you and our brother Keith!
Speaking of Keith, I just got to see him when I was in British Columbia visiting Mel! It was wonderful. We got to meet Barb, too, and all went out for coffee and some jazz and then wine and tapas and it was magic. Barb reminded us of how important the work we do is. She made us all tear up a bit, saying how she was amazed by all the work we do for people we will never meet. It really choked me up. And lifted me up.
I truly am so grateful for the people in my life that came into my life through pain. You're an OG, Pete. A legend. And I love ya!!
Yes I heard you were in Keith's neighbourhood recently Jo and so pleased to hear you met up with our brother and Barb.
All of us just need to do is get up every morning and put one foot in front of the other and stay focused. As my younger sister would tell all of us and that is the keep our business heads on.
Good news to share: We launchd the Pain Toolkit Academy last Tuesday. At the moment it is just for healthcare workers. It ideal for healthcare workers who are just starting out and others who would like to learn some extra pain self management skills.
For the last 10 or so years I have been banging on about medical schools to include pain self management within their curriculums. One or two have, but the majority haven't so I thought f**k it, I'll do it myself. Kept it low cost and affordable to cover the costs.
Have an excellent day my sister. Just off to wind it down and have a nice cup of tea
Hard not to get emotional reading that as it takes me right back into the battlegrounds and reflection on where I've come from on my pain journey.
I can't imagine how difficult it must have been to reflect and write on that difficult part of yours, there is strength there many of us still seek, and by sharing this you share your strength with us. Keep fighting the good fight and thank you!
Thanks so much for your kind words, support, and sharing your own vulnerability. Messages like these are the reasons I keep writing, and keep revisiting those battlegrounds. You've made my morning, Julian, thank you ❤️ And thanks for being here. It means so much.
Agree with every word. I’m giving a lecture at Newcastle University next week on the value of partnership with ***** (yeah, what DO we call ourselves?? I’m not a patient for one….) so this is timely and also validates the approach I was going to take which was less lecture and more discussion…
I remember how “found” and empowered I felt the one time I walked out of consultation with a psychologist who I really struggled with….I’m going to take a bit of that energy with me in a back pocket 😅🙌🏽
Thanks Pete! I struggle with Person with persistent pain, as I just don’t compared to how I once was…so I’d have to be person who once had disabling pain but is doing well now but still lives mindfully and has the odd flare…..but it again shows the sheer breadth of experience, we are not a monolith, and how can one term encompass all that? The closest maybe is “expert by experience” but I find that icky as well. The trouble is any term just becomes a label rather than the person anyway.
Joletta, thank you so much, I so appreciate and value you as well 🫂
I think we will! I just hope we get to decide and own it. There is space for sub sets as well of course.
An irony was that I emailed an author of a paper about better “patient” representation (recent paper) to ask which of the authors was the PP/LEX etc etc….and none of them were 🤦🏽♀️
Two were heads of patient groups but not “patients” themselves, which is a needed but different type of representation. Author said that t they had approached several but due to the time limitations on publication no one could join them. Showing a barrier but also the lack of thought and value imo of embedding us at the planning stage….hey ho, it will make a good example! (And not entirely the authors fault, he was very swift and generous to engage with me, there are systemic pressures on us all…)
Thanks so much, Niki! Newcastle University is lucky to have you next week, I know the discussion will be enlightening and engaging for all who attend. And yeah...what do we friggin' call ourselves? We need to all get together to figure this out 😅 I'm so grateful our paths met, Niki. You're amazing!
Excellent as always. Let's get comfy making others uncomfortable - we have a worthy cause! Thanks for keeping on writing and sharing and expressing through the years, loved reading people's comments for this post - great discussion!
As a healthcare professional I hate the name patient (puts a damaging hierarchy in place), client (sounds sleezy), PWLE (sounds pompus and like you've tried some sort of virtual reality experience of persistent pain).
The best companies in the world obsess over their customers and put them at the centre so healthcare should be viewing anyone that seeks us as far more important than us. I'm not saying that is the name but it's a better way for healthcare to look at the people that seek our care.
This is the reason I love reading what you have to say, you can articulate what many people struggling can't, won't or aren't invited too. It boggles my mind that you have to flight and 'fit in' when invited to events put on supposedly all in service of you. Makes me wonder why the people in the room are really there. To build their 'expert' ego or to learn directly from whom they supposedly care for rather than from 3rd hand information passed on from a fellow expert. All whilst the problem of ongoing pain grows rather than shrinks.
Not sure if you've heard this poem before but I like it and hope it helps you realise how big the work you're doing is.
You have no enemies, you say? Alas, my friend, the boast is poor. He who has mingled in the fray of duty that the brave endure, must have made foes. If you have none, small is the work that you have done. You’ve hit no traitor on the hip. You’ve dashed no cup from perjured lip. You’ve never turned the wrong to right. You’ve been a coward in the fight.
Charles Mackay
Keep being you and just signed up to Pete's Pain Toolkit Academy 👌
Thanks so much, Steven! Especially for the poem. It's such a good reminder.
It's an interesting question about why people are in the room, what their motivations are, what they hope to get out of it. Whether it's a presentation or a part of a working group or whatever. I'm a part of a consumer-led grant (which is awesome and an amazing team) and recently started a meeting with a reflexive exercise as to why people wanted to be a part of our project. It was lovely, and I wish it happened in more spaces.
There's still just so many misunderstandings as to what people like me are doing in these traditionally academic spaces. And still a lot of paternalism, stigma, judgement.
It's getting better, too, though. Evidence of that is that I'm now in a place where I feel like I can speak out and speak up. It's only because I have so much support, so many true collaborators and allies, that I'm able to. People in positions of power are supporting what we do now, and putting money and resources toward integrating lived ways of knowing pain and health into the work of research and health systems design or strengthening. That's amazing. And it seems to be happening with more and more frequency in my little corner of this world. That gives me hope.
The people I piss off were never gonna be won over by me anyway. So protecting their feelings (or comfort), when so many of their colleagues are doing so much good, just isn't a priority any more. And they certainly don't care about my feelings (or comfort) so it's mutual!
Hearing from folks like you keeps me going, too. I don't know where I'd be without this blog, and getting to actually interact with amazing folks through these comments and discussions. It is so heartening and uplifting. It makes me feel I'm doing something right!
And now, with the poem you shared, when I get a bunch of unsubscribes after a post I will remind myself it is a sign of success, not failure ❤️💪
I always try to make myself see unsubscribes as a % of those who received it, not just 3 people unsubscribed. Can't help take each one a bit personally, think it's being human when you write about things you care about and put your honest self into it.
Don't let it change your path or you end up being influenced by the people who are no longer here rather than those that are and love what you do.
Thank you so much for this ❤️🥰 I just told John how much you've helped me reframe things the last two days! I'm grateful. The percentage thing, and the poem, will be so helpful for every future post! And the poem in every future room 💪
Glad you found them useful. Luke my work colleague gifted me the poem and it helped me so I'm glad I had the opportunity to do the same. The % thing was my wife who's background is in marketing and was impressed with my open rate and unsubscribe % so it made me think how are we both looking at the same data and you're impressed but I feel the opposite then I figured it out.
I like to remind myself the only way to get 0% unsubscribes is to never send it but that's fear in control and that's not who I want to be. As long as what I write is authentic with the intention to inspire people to look after themselves then it's all good. I'd rather have a few true followers than lots of people that tolerate me as long as I don't disrupt the status quo!
Have a lovely weekend and loving getting to hear Pete Moores thoughts on things. His simple pacing strategy of 50% baseline and at least 7/10 goals is simple and powerful. His course is concise and water tight which is what I like. Tight in that it's built from what works rather than so many courses built on the theory of what helps people. Plus we both used to be painter and decorators 🖌️
Like you Steven, not keen on the term patient and where I can I use the term 'people with persistent pain.
Thanks for signing up for the Pain Toolkit Academy. Don't forget to join the Academy Community, so you can join live events and see what other events the Pain Toolkit has organised.
I think on reflection I try to avoid giving someone a label that didn't come from them so they are first name as am I because we're both equals and between us will figure out a better way forward that always strives to end with self management.
I'll certainly join the academy and look forward to chatting more.
Totally agree with acceptance being the crucial first step in the toolkit but usually the hardest one to take because it's not fair that some people have ongoing pain and others don't.
Loving the course, about 35% into it and look forward to completing next week and seeing you in the academy community.
Have a fab weekend, I've got a climbing frame to build 😀
Acceptance can be a massive hurdle for people. It was for me as I was a serial doctor/therapy shopper. But when I accepted nothing was working I accepted I have to take more responsibility. The funny thing is, when I did lots of opportunities came my way and the pain management programme was one of them.
Acceptance I've noticed is in other programmes like the 12 Step programmes and Acceptance Commitment Therapy.
Thanks for the positive feedback about the course.
Good luck with the climbing frame. After sending this message, I'm getting ready to go out on my Bike
Thanks for reminding me that in advocacy work that if I'm feeling uncomfy I'm probably doing something right. I love the reminder that the people who want you to be silent aren't really the ones that need/ want you anyway. So... they can sit down and pout if they want while some of us go about trying make meaningful change for those most in need. :)
Just seen it Jo and good have him on board and hope he joins the Academy Community hub. We are going to organise live event for networking and of course swapping ideas etc
Nice piece Jo
I sometime get flash backs to my back pain days when I was struggling and trying to make sense of what was happening and what was to become of me.
Healthcare professionals then had never heard of back pain self management and the whole system was geared up to either give me pain meds or send me on the carousel of healthcare.
Starting a back pain support group was to be my get out of jail card, but didn't know that at the time.
One speaker a clinical psychologist was going to get me back on track and get me on a pain management programme and you know what happened after that.
Why am I still doing what I do after 30yrs? Why are you and Keith, our brother do still what you do? I think it is been our destiny to be there for others, who have had or having problem with healthcare and showing/signposting them to another way of managing persistent pain.
Keep up the excellent work you do my friend and keep writing these excellent pieces
Pete
Thanks so much, Pete. All of us doing this work are standing on your shoulders my brother. You paved the way for us to get those invitations, to have seats at various tables, to have a chance to make a difference. I am forever grateful to you. Not just for your three decades of work, but also, and perhaps especially, for your unwavering support, encouragement, and friendship. I wouldn't be able to do what I do without the likes of you and our brother Keith!
Speaking of Keith, I just got to see him when I was in British Columbia visiting Mel! It was wonderful. We got to meet Barb, too, and all went out for coffee and some jazz and then wine and tapas and it was magic. Barb reminded us of how important the work we do is. She made us all tear up a bit, saying how she was amazed by all the work we do for people we will never meet. It really choked me up. And lifted me up.
I truly am so grateful for the people in my life that came into my life through pain. You're an OG, Pete. A legend. And I love ya!!
Yes I heard you were in Keith's neighbourhood recently Jo and so pleased to hear you met up with our brother and Barb.
All of us just need to do is get up every morning and put one foot in front of the other and stay focused. As my younger sister would tell all of us and that is the keep our business heads on.
Good news to share: We launchd the Pain Toolkit Academy last Tuesday. At the moment it is just for healthcare workers. It ideal for healthcare workers who are just starting out and others who would like to learn some extra pain self management skills.
For the last 10 or so years I have been banging on about medical schools to include pain self management within their curriculums. One or two have, but the majority haven't so I thought f**k it, I'll do it myself. Kept it low cost and affordable to cover the costs.
Have an excellent day my sister. Just off to wind it down and have a nice cup of tea
Pete
Enjoy your tea, Pete! And 'f**k it I'll do it myself' is a great t-shirt idea for you ;)
Hard not to get emotional reading that as it takes me right back into the battlegrounds and reflection on where I've come from on my pain journey.
I can't imagine how difficult it must have been to reflect and write on that difficult part of yours, there is strength there many of us still seek, and by sharing this you share your strength with us. Keep fighting the good fight and thank you!
Thanks so much for your kind words, support, and sharing your own vulnerability. Messages like these are the reasons I keep writing, and keep revisiting those battlegrounds. You've made my morning, Julian, thank you ❤️ And thanks for being here. It means so much.
Heroic Jo, bravo!
Agree with every word. I’m giving a lecture at Newcastle University next week on the value of partnership with ***** (yeah, what DO we call ourselves?? I’m not a patient for one….) so this is timely and also validates the approach I was going to take which was less lecture and more discussion…
I remember how “found” and empowered I felt the one time I walked out of consultation with a psychologist who I really struggled with….I’m going to take a bit of that energy with me in a back pocket 😅🙌🏽
Hugs Niki x
Personally, I see myself as a person living with persistent pain.
Good luck with the presentation Niki - we really need to get into the teaching institutions to spread the messages
Thanks Pete! I struggle with Person with persistent pain, as I just don’t compared to how I once was…so I’d have to be person who once had disabling pain but is doing well now but still lives mindfully and has the odd flare…..but it again shows the sheer breadth of experience, we are not a monolith, and how can one term encompass all that? The closest maybe is “expert by experience” but I find that icky as well. The trouble is any term just becomes a label rather than the person anyway.
Joletta, thank you so much, I so appreciate and value you as well 🫂
Always go what you feel comfortable with Niki and think we will be chatting about this for the foreseeable 🤔
I think we will! I just hope we get to decide and own it. There is space for sub sets as well of course.
An irony was that I emailed an author of a paper about better “patient” representation (recent paper) to ask which of the authors was the PP/LEX etc etc….and none of them were 🤦🏽♀️
Two were heads of patient groups but not “patients” themselves, which is a needed but different type of representation. Author said that t they had approached several but due to the time limitations on publication no one could join them. Showing a barrier but also the lack of thought and value imo of embedding us at the planning stage….hey ho, it will make a good example! (And not entirely the authors fault, he was very swift and generous to engage with me, there are systemic pressures on us all…)
Thanks so much, Niki! Newcastle University is lucky to have you next week, I know the discussion will be enlightening and engaging for all who attend. And yeah...what do we friggin' call ourselves? We need to all get together to figure this out 😅 I'm so grateful our paths met, Niki. You're amazing!
Excellent as always. Let's get comfy making others uncomfortable - we have a worthy cause! Thanks for keeping on writing and sharing and expressing through the years, loved reading people's comments for this post - great discussion!
Thanks so much Dorota! The folks like yourself who read these posts and comment keep me going!
Great rant Jo!
As a healthcare professional I hate the name patient (puts a damaging hierarchy in place), client (sounds sleezy), PWLE (sounds pompus and like you've tried some sort of virtual reality experience of persistent pain).
The best companies in the world obsess over their customers and put them at the centre so healthcare should be viewing anyone that seeks us as far more important than us. I'm not saying that is the name but it's a better way for healthcare to look at the people that seek our care.
This is the reason I love reading what you have to say, you can articulate what many people struggling can't, won't or aren't invited too. It boggles my mind that you have to flight and 'fit in' when invited to events put on supposedly all in service of you. Makes me wonder why the people in the room are really there. To build their 'expert' ego or to learn directly from whom they supposedly care for rather than from 3rd hand information passed on from a fellow expert. All whilst the problem of ongoing pain grows rather than shrinks.
Not sure if you've heard this poem before but I like it and hope it helps you realise how big the work you're doing is.
You have no enemies, you say? Alas, my friend, the boast is poor. He who has mingled in the fray of duty that the brave endure, must have made foes. If you have none, small is the work that you have done. You’ve hit no traitor on the hip. You’ve dashed no cup from perjured lip. You’ve never turned the wrong to right. You’ve been a coward in the fight.
Charles Mackay
Keep being you and just signed up to Pete's Pain Toolkit Academy 👌
Thanks so much, Steven! Especially for the poem. It's such a good reminder.
It's an interesting question about why people are in the room, what their motivations are, what they hope to get out of it. Whether it's a presentation or a part of a working group or whatever. I'm a part of a consumer-led grant (which is awesome and an amazing team) and recently started a meeting with a reflexive exercise as to why people wanted to be a part of our project. It was lovely, and I wish it happened in more spaces.
There's still just so many misunderstandings as to what people like me are doing in these traditionally academic spaces. And still a lot of paternalism, stigma, judgement.
It's getting better, too, though. Evidence of that is that I'm now in a place where I feel like I can speak out and speak up. It's only because I have so much support, so many true collaborators and allies, that I'm able to. People in positions of power are supporting what we do now, and putting money and resources toward integrating lived ways of knowing pain and health into the work of research and health systems design or strengthening. That's amazing. And it seems to be happening with more and more frequency in my little corner of this world. That gives me hope.
The people I piss off were never gonna be won over by me anyway. So protecting their feelings (or comfort), when so many of their colleagues are doing so much good, just isn't a priority any more. And they certainly don't care about my feelings (or comfort) so it's mutual!
Hearing from folks like you keeps me going, too. I don't know where I'd be without this blog, and getting to actually interact with amazing folks through these comments and discussions. It is so heartening and uplifting. It makes me feel I'm doing something right!
And now, with the poem you shared, when I get a bunch of unsubscribes after a post I will remind myself it is a sign of success, not failure ❤️💪
Thank you, Steven! So grateful you're here.
I always try to make myself see unsubscribes as a % of those who received it, not just 3 people unsubscribed. Can't help take each one a bit personally, think it's being human when you write about things you care about and put your honest self into it.
Don't let it change your path or you end up being influenced by the people who are no longer here rather than those that are and love what you do.
Thank you so much for this ❤️🥰 I just told John how much you've helped me reframe things the last two days! I'm grateful. The percentage thing, and the poem, will be so helpful for every future post! And the poem in every future room 💪
Glad you found them useful. Luke my work colleague gifted me the poem and it helped me so I'm glad I had the opportunity to do the same. The % thing was my wife who's background is in marketing and was impressed with my open rate and unsubscribe % so it made me think how are we both looking at the same data and you're impressed but I feel the opposite then I figured it out.
I like to remind myself the only way to get 0% unsubscribes is to never send it but that's fear in control and that's not who I want to be. As long as what I write is authentic with the intention to inspire people to look after themselves then it's all good. I'd rather have a few true followers than lots of people that tolerate me as long as I don't disrupt the status quo!
Have a lovely weekend and loving getting to hear Pete Moores thoughts on things. His simple pacing strategy of 50% baseline and at least 7/10 goals is simple and powerful. His course is concise and water tight which is what I like. Tight in that it's built from what works rather than so many courses built on the theory of what helps people. Plus we both used to be painter and decorators 🖌️
Thank Luke and your wife for me, too!
That's great to hear about Pete's course. He's such a wonderful human. It's his shoulders I stand on in this space and I'm forever grateful.
That's awesome about your shared history, too!
And to just keep reminding myself, always, that I'm showing up for the people who are here, who I am in community with, and that's what matters. ❤️
Like you Steven, not keen on the term patient and where I can I use the term 'people with persistent pain.
Thanks for signing up for the Pain Toolkit Academy. Don't forget to join the Academy Community, so you can join live events and see what other events the Pain Toolkit has organised.
I think on reflection I try to avoid giving someone a label that didn't come from them so they are first name as am I because we're both equals and between us will figure out a better way forward that always strives to end with self management.
I'll certainly join the academy and look forward to chatting more.
Totally agree with acceptance being the crucial first step in the toolkit but usually the hardest one to take because it's not fair that some people have ongoing pain and others don't.
Loving the course, about 35% into it and look forward to completing next week and seeing you in the academy community.
Have a fab weekend, I've got a climbing frame to build 😀
Acceptance can be a massive hurdle for people. It was for me as I was a serial doctor/therapy shopper. But when I accepted nothing was working I accepted I have to take more responsibility. The funny thing is, when I did lots of opportunities came my way and the pain management programme was one of them.
Acceptance I've noticed is in other programmes like the 12 Step programmes and Acceptance Commitment Therapy.
Thanks for the positive feedback about the course.
Good luck with the climbing frame. After sending this message, I'm getting ready to go out on my Bike
Speak soon
Pete
Thanks for reminding me that in advocacy work that if I'm feeling uncomfy I'm probably doing something right. I love the reminder that the people who want you to be silent aren't really the ones that need/ want you anyway. So... they can sit down and pout if they want while some of us go about trying make meaningful change for those most in need. :)
Thank you Liz!
I did enjoy my tea and digging your idea for a t-shirt 🤣
Love it Pete! I don't know if you saw in Steven Ojari's comment, but he just signed up for your Pain Toolkit Academy! 😃💪
Just seen it Jo and good have him on board and hope he joins the Academy Community hub. We are going to organise live event for networking and of course swapping ideas etc
#SelfmgtLIVING-Works