Great post. I am in a flare up of ME and Fibro and in a cycle of feeling slightly better, doing too much (which in fact is very little) getting frustrated, having to reach rest and acceptance and repeat. The acceptance helps when I'm there but I agree it isn't a one time thing! The lack of medical interest really stigmatises things and makes it so much harder to deal with. I feel this post x
Thank you! I'm sorry you're flaring. I'm trying to get out of a boom-and-bust cycle, too. It's a whole different kind of hard when your baseline improves a bit, and you want to try to do ALL THE THINGS. I do think the medical establishment is catching up, but there is still so much stigma, and in the post-covid world demand for expert is so much greater than supply! Sending you love and solidarity <3
You might have just helped me understand my late hubby better. Hadn't thought of his shutdowns in quite those terms before. Hmm. And ... the pandemic, for me, just reinforced what I'd learned about the medical establishment (and society) starting the year before, during E's early TBI time. So it was reassuring, in the same way that Gaza is reassuring to me that injustices that have been done to me isn't because of me, isn't about me at all - barbarism is the way humanity rolls. I both blame humans and I don't forgive them. But I strive for acceptance too, and I love how you legitimize that repeated struggle. Your writing is both beautiful and very legitimizing (there's another word but I can't think of it right now), to me. Thank you for sharing it. <3
I really felt this. Also bookmarked it to come back and read it again, as it feels connected to a piece I am writing. I love this line: “The glorification of suffering is a tool of oppressors who bully us into enduring exploitation by telling us it is virtuous to endure.” I feel a thread between your experience—especially life inside of pain and outside of diagnosis—and someone like Abby Norman, who writes about endometriosis.
I’d be happy to share the piece I am working on as I think it intersects with your work, even as it also diverges, though right now it’s like 30 pages of writing and I don’t yet know if it is a chapter or if it needs to be chopped up into shorter essays. Writing is fun!
I bet you’d like Abby Norman’s book. It’s called Ask Me About My Uterus.
HI Rachel. I enjoyed reading this. So much of it rang true. Thank you for the audio recording that makes it much easier for me to consume. Housebound and mostly bed bound, I'm living with severe ME/CFS. I like that we all get to make the meaning out of it that is meaningful to us. In my best moments, I see this path as the great teacher -- a path that I've chosen and I wouldn't have it any other way. In my worst moments, I'm terrified of the suffering that is yet to come.
Hi Hal, thank you for this thoughtful comment. I really feel that tension between how we understand illness in our best and worst moments. It’s a very strange needle to thread, psychologically—ME is a catastrophe that I wouldn’t wish on anyone, but it also has objectively changed my life and person in ways I value. It helps to know we’re not alone on this journey. Sending you solidarity across Substack ❤️
I'm glad to meet you here. Catastrophe is an appropriate word that I may use to use in some future essay. Yes. I long for solidarity with others who can relate. The isolation is such a big part of the suffering for me. ❤️
Glad to meet you, too. The isolation is terrible. I’ve been bedbound for a little over a year now (although I am starting to have a little bit more freedom), and I’m still trying to figure out how to connect with others.
Loved reading this piece and your thinking on pain and suffering. I think that part about the dose is so important. Some pain, like a fibro flare is difficult but I can handle it. But my nerve pain & severe migraines are a different story. There is only pain & the desperate feral plea to be out of it. Nothing gained from going thru it, well maybe experiential empathy but I can get that after one or two experiences.
I’ve been sick for 25 years & have mostly accepted it but I have days/periods where I don’t, especially after a downgrading of my baseline.
Much love back to you, Lisa. I love your use of the word feral here, the desperate feral plea. Pain really does strip away everything but the need to be free of it, and acceptance is a process, with ups and downs. <3
So powerful to read about your “bathroom floor” initiation. I became debilitatingly mysteriously sick in 2005, I had already been quasi-sick for five+ years, and it would be over a decade before I had a diagnosis (mold toxicity and mast cell activation syndrome) and another five years before there was any relief. Had I known then that these “bathroom floor initiations” would one day be something women would talk about and write about would have given me such hope. I did not know, for most of my years of illness—which of course included all the financial and relationship turmoils that go along with these states, and many, many, many encounters with a broken and gaslighting medical system—that anyone else had ever gone through such physical, existential and psychic exile. I can see now the grace in what was dissolved and remade in me as I surfed these horror-waters all those years. I want to thank you, and others, who are so courageously writing about these experiences now. I think it’s a phenomena that deserves devotion, on every level. Thank you for surviving, and writing, and reaching for the humanity in yourself and others through it all.
Thank you for reading and responding! Chronic illness is isolating and demoralizing, and it's absolutely vital for us to connect and share our stories. Love and solidarity.
Your writing is stunning. I'm holding onto this post because it's worth re-reading a few times. I got to several places in it where I stopped and said, "Whoa!" and "Bam!" I've just recommended your account to my mentee who's planning to join Substack soon.
Wow, this brought up so much for me and *perfectly* articulates something I was feeling super strongly during my recent Vipassana retreat, which I just wrote about. I basically came up against a lot of anger at all the suffering in the world that I'd never really confronted before. Sometimes it's okay to be angry. Sometimes it really is all bullshit. Any acceptance — if there is to be acceptance at all — can't happen until we face our anger and pass through that needle's eye.
Also, what fiercely beautiful writing. I loved this piece.
Thanks for reading, and for this comment! I’ll check out your writing. I think there can be a lot of spiritual bypassing around suffering, and for me authentically confronting it means dealing with a lot of anger and confusion about the senselessness of it all.
Thank you for sharing this Rachel. It’s people like you who when they speak up, become the push towards getting empathy out of the cold hard and regulated medical model. Chronic illnesses that are less known thrown into trauma is a very special kind of hell. I hope you feel better, and thank you for invigorating me in my own crusade on substack. Would appreciate if you took a peek! I write on similar topics and would love to trade ideas and plans and maybe work on a collaboration :)
Thanks for this comment, and for your empathy and solidarity. I think medicine is going to have to change, assuming the system doesn't collapse (which it may). There are just too many chronically ill folks in the wake of the pandemic, and more of us all the time. I'd love to hear more about your work and plans, feel free to DM me!
Loved this piece, thank you for your wisdom. The section about the thrashing of the ego hit especially true for me - as I navigate a herniated disc, I'm holding this one close, and feeling grateful to be alongside you.
I had many bathroom floor moments since the beginning of the pandemic too as a result of LC. I haven’t come out of it changed or trusting myself not to abandon myalgia but rather with the knowledge that somehow those are lessons to be learned. Maybe the fact i feel those lessons are to be learned already means im learning them even though very slowly as part of that repeated moment to moment acceptance. What a wonderful piece. I have been loving reading what you write and pictures you put to them. Thank you for helping me feel into my own tangled story.
Thank you so much for commenting, it means a lot that my writing connects with other folks who are going through similar experiences. Tangled is a good word for our stories, for which there really is no clear path. This stuff is so, so hard, I think we deserve all the credit in the world just for surviving. Love and solidarity ❤️
Maybe tidy conclusions are as much bullshit as suffering is. Thank you for sharing <3
Great post. I am in a flare up of ME and Fibro and in a cycle of feeling slightly better, doing too much (which in fact is very little) getting frustrated, having to reach rest and acceptance and repeat. The acceptance helps when I'm there but I agree it isn't a one time thing! The lack of medical interest really stigmatises things and makes it so much harder to deal with. I feel this post x
Thank you! I'm sorry you're flaring. I'm trying to get out of a boom-and-bust cycle, too. It's a whole different kind of hard when your baseline improves a bit, and you want to try to do ALL THE THINGS. I do think the medical establishment is catching up, but there is still so much stigma, and in the post-covid world demand for expert is so much greater than supply! Sending you love and solidarity <3
Love and solidarity to you too x
You might have just helped me understand my late hubby better. Hadn't thought of his shutdowns in quite those terms before. Hmm. And ... the pandemic, for me, just reinforced what I'd learned about the medical establishment (and society) starting the year before, during E's early TBI time. So it was reassuring, in the same way that Gaza is reassuring to me that injustices that have been done to me isn't because of me, isn't about me at all - barbarism is the way humanity rolls. I both blame humans and I don't forgive them. But I strive for acceptance too, and I love how you legitimize that repeated struggle. Your writing is both beautiful and very legitimizing (there's another word but I can't think of it right now), to me. Thank you for sharing it. <3
Yes, that weird feeling of validation when your realize that the problems are systemic, not person, “its not just me!” I know just what you mean <3
I really felt this. Also bookmarked it to come back and read it again, as it feels connected to a piece I am writing. I love this line: “The glorification of suffering is a tool of oppressors who bully us into enduring exploitation by telling us it is virtuous to endure.” I feel a thread between your experience—especially life inside of pain and outside of diagnosis—and someone like Abby Norman, who writes about endometriosis.
I’d love to see the piece you’re working on. And thank you for recommending Abby Norman! So glad that line resonated with you ❤️
I’d be happy to share the piece I am working on as I think it intersects with your work, even as it also diverges, though right now it’s like 30 pages of writing and I don’t yet know if it is a chapter or if it needs to be chopped up into shorter essays. Writing is fun!
I bet you’d like Abby Norman’s book. It’s called Ask Me About My Uterus.
Writing is fun! And always surprises me by veering off in odd directions. So impressed that you’re working on such a long piece!
HI Rachel. I enjoyed reading this. So much of it rang true. Thank you for the audio recording that makes it much easier for me to consume. Housebound and mostly bed bound, I'm living with severe ME/CFS. I like that we all get to make the meaning out of it that is meaningful to us. In my best moments, I see this path as the great teacher -- a path that I've chosen and I wouldn't have it any other way. In my worst moments, I'm terrified of the suffering that is yet to come.
Hi Hal, thank you for this thoughtful comment. I really feel that tension between how we understand illness in our best and worst moments. It’s a very strange needle to thread, psychologically—ME is a catastrophe that I wouldn’t wish on anyone, but it also has objectively changed my life and person in ways I value. It helps to know we’re not alone on this journey. Sending you solidarity across Substack ❤️
I'm glad to meet you here. Catastrophe is an appropriate word that I may use to use in some future essay. Yes. I long for solidarity with others who can relate. The isolation is such a big part of the suffering for me. ❤️
Glad to meet you, too. The isolation is terrible. I’ve been bedbound for a little over a year now (although I am starting to have a little bit more freedom), and I’m still trying to figure out how to connect with others.
Those layers of acceptance are really hard in the moment. Even 9 years on I struggle with that on especially symptomatic days.
I'm so glad this resonated. Thank you for sharing your work and experience here on Substack <3
Loved reading this piece and your thinking on pain and suffering. I think that part about the dose is so important. Some pain, like a fibro flare is difficult but I can handle it. But my nerve pain & severe migraines are a different story. There is only pain & the desperate feral plea to be out of it. Nothing gained from going thru it, well maybe experiential empathy but I can get that after one or two experiences.
I’ve been sick for 25 years & have mostly accepted it but I have days/periods where I don’t, especially after a downgrading of my baseline.
Much love 💜
Much love back to you, Lisa. I love your use of the word feral here, the desperate feral plea. Pain really does strip away everything but the need to be free of it, and acceptance is a process, with ups and downs. <3
So powerful to read about your “bathroom floor” initiation. I became debilitatingly mysteriously sick in 2005, I had already been quasi-sick for five+ years, and it would be over a decade before I had a diagnosis (mold toxicity and mast cell activation syndrome) and another five years before there was any relief. Had I known then that these “bathroom floor initiations” would one day be something women would talk about and write about would have given me such hope. I did not know, for most of my years of illness—which of course included all the financial and relationship turmoils that go along with these states, and many, many, many encounters with a broken and gaslighting medical system—that anyone else had ever gone through such physical, existential and psychic exile. I can see now the grace in what was dissolved and remade in me as I surfed these horror-waters all those years. I want to thank you, and others, who are so courageously writing about these experiences now. I think it’s a phenomena that deserves devotion, on every level. Thank you for surviving, and writing, and reaching for the humanity in yourself and others through it all.
Thank you for reading and responding! Chronic illness is isolating and demoralizing, and it's absolutely vital for us to connect and share our stories. Love and solidarity.
Your writing is stunning. I'm holding onto this post because it's worth re-reading a few times. I got to several places in it where I stopped and said, "Whoa!" and "Bam!" I've just recommended your account to my mentee who's planning to join Substack soon.
Thank you so much! It is so meaningful to get feedback like this <3
Wow, this brought up so much for me and *perfectly* articulates something I was feeling super strongly during my recent Vipassana retreat, which I just wrote about. I basically came up against a lot of anger at all the suffering in the world that I'd never really confronted before. Sometimes it's okay to be angry. Sometimes it really is all bullshit. Any acceptance — if there is to be acceptance at all — can't happen until we face our anger and pass through that needle's eye.
Also, what fiercely beautiful writing. I loved this piece.
Thanks for reading, and for this comment! I’ll check out your writing. I think there can be a lot of spiritual bypassing around suffering, and for me authentically confronting it means dealing with a lot of anger and confusion about the senselessness of it all.
Thank you for sharing this Rachel. It’s people like you who when they speak up, become the push towards getting empathy out of the cold hard and regulated medical model. Chronic illnesses that are less known thrown into trauma is a very special kind of hell. I hope you feel better, and thank you for invigorating me in my own crusade on substack. Would appreciate if you took a peek! I write on similar topics and would love to trade ideas and plans and maybe work on a collaboration :)
Thanks for this comment, and for your empathy and solidarity. I think medicine is going to have to change, assuming the system doesn't collapse (which it may). There are just too many chronically ill folks in the wake of the pandemic, and more of us all the time. I'd love to hear more about your work and plans, feel free to DM me!
Loved this piece, thank you for your wisdom. The section about the thrashing of the ego hit especially true for me - as I navigate a herniated disc, I'm holding this one close, and feeling grateful to be alongside you.
So very glad this resonated, dear friend! Sending wishes for ease and relief to your disc. Gratefully to be alongside you as both our journeys evolve!
I had many bathroom floor moments since the beginning of the pandemic too as a result of LC. I haven’t come out of it changed or trusting myself not to abandon myalgia but rather with the knowledge that somehow those are lessons to be learned. Maybe the fact i feel those lessons are to be learned already means im learning them even though very slowly as part of that repeated moment to moment acceptance. What a wonderful piece. I have been loving reading what you write and pictures you put to them. Thank you for helping me feel into my own tangled story.
Thank you so much for commenting, it means a lot that my writing connects with other folks who are going through similar experiences. Tangled is a good word for our stories, for which there really is no clear path. This stuff is so, so hard, I think we deserve all the credit in the world just for surviving. Love and solidarity ❤️
*myalgea = myself
I’m so glad it resonated ❤️