I was diagnosed with vascular Ehlers- Danlos- it has a freaking genetic mutation- and that STILL wasn’t enough for people to accept that I had legitimate health issues.
I wrote my response to them in a substack post entitled SOUL CHOICES,
but I will add— that my goal is neither to be an ableist to myself or others— NOR to allow my laundry list of diagnosis to define me.
For me personally- allowing myself to be defined and limited by my health issues a type of ableism in a way- if that makes sense.
I refuse to fight for my limitations while allowing myself the grace of those limitations.
I know that I suffer more when I focus on what I can’t do.
While I do NOT think I manifested this, I DO think our words can become a self-fulfilled prophecy— now, before you cancel me, please know I hear what sounds like a contradiction too. I don’t have the words to clarify yet- I can only tell you that doctors expected me to die in 2018 and I think a large part of why I’m still alive is because…
… I expanded the definition of what it means to be me- even with a diagnosis- without minimizing or dismissing it.
Thank for writing this powerful piece and allowing me to contribute to the conversation. I appreciate it.
No no no I get it! I think I'm picking up what you're putting down, and actually we're on the same page. It's a tricky line to walk - that line between toxic positivity and optimism/therapeutic positive thinking. That line between denial and trying not to wallow. That line between self gaslighting and using the mind-body connection to our advantage.
While I don't believe I manifested my illness, I also know that when I spend too much time thinking about illness, or when I ONLY think about the possibility of feeling this way til I die and not ALSO the possibility that maybe I won't, it not only makes me more miserable but my symptoms do get worse, because stress has a real effect on the body's systems, and those systems need as much help as they can get.
Thank you for chiming in. And also OMG "YOUR SOUL CHOSE THIS" is such quintessential New Age ableism it would be funny if it weren't so annoying.
Thank you, Molly. Yes, you really do get it. I appreciate that we see and hear each other. This is a hard club to be a part of but the people in it have the most depth, heart, humor, and intellect I’ve ever known. Gentle hugs, spoonie sister.❤️🩹
This is fantastic. Thank you for all the work I know must have gone into this! I'm part way through writing the first of a probable series of pieces called “A non-exhaustive list of things you can do to help”, because I published a piece about disabled grief last month and now I mostly grieve my faith in humanity, and had a lot of comments asking how they could build that hope back up. This is a really similar concept, to compile a list about ableism and some dos/don'ts! Great to see more resources being created and compiled and this is so well written x
Thank you so much for this, and for recognizing how much work it was. It actually took me two painstaking weeks to write it, while doing little else (including some days brushing my teeth). I'm glad that it resonates with you. That makes the work worth it. Your series sounds AWESOME and so needed. I really think people want to know how to help, and very much need to be told how, because what works for other kinds of illnesses or challenges so often doesn't work for us. I can't wait to see it!
That doesn't surprise me at all - thank you so much for spending the time and energy on writing it, it's genuinely so brilliant. I'll try and remember to tag you when my first list is published! ☺️
Always such good, deep, well-worded insights. YES. Have been on both sides. It makes me wonder if there's some sort of shorthand on "how not to be ableist"—a quick way to gut check. 5 common pitfalls and why they hurt the people you're trying to help. Not to skip the work...but maybe to shortcut to the empathy? Am I thinking in copywriter?
Maybe you're thinking like a copywriter, but if so, you're a GENIUS copywriter because that's brilliant. Seriously - it's a great idea and we should make it! I actually think it could maybe be pretty simple...?
Curious to know whether you've ever stumbled across the work of Michael Berube and Janet Lyon? They are cultural studies scholars who found themselves pushing their work into disability studies after the diagnosis of their son Jamie with Down's syndrome. I haven't looked them up in a while but I read a bunch of MB's pre-disability work in college and followed his blog in the 00s. (I have no strong recommendation here, literally just curious).
Oh interesting! No I've never come across them. Unless they were part of an "Activism Bootcamp" I participated in as part of ME Action, which was mostly a Disability Justice 101 class, with a little focus on ME/CFS specifically at the end, and I read an essay or something by one of them but am not remembering the name... it looks like Michael mostly writes books and Janet is doing the professor thing...? Which, btw, this tidbit from her bio is the most academia thing I've ever read:
"She has published widely on the literature and culture of modernism and is at work on a book linking the conceptual appearance of disability as concept with the coeval development of modernist aesthetics. She has delivered several invited talks on this subject, and recently published a portion of the project appeared in the flagship field journal Modernism/modernity: “On the Asylum Road with Woolf and Mew”"
It’s a lot to navigate in a disabled body. I’m very grateful for loved ones who understand these realities. And there have been a lot of boundaries like the ones you’ve described that are necessary for a baseline of daily pacing and wellbeing.
I feel like we are beset upon just now and am wondering what the week will bring as the pain interrupts sleep.
You’ve probably seen these assessments where docs ask if we are afraid of the pain or afraid of it never going away. I’m not afraid of it, moreover exhausted and increasingly aware that life would be so much different with more networks of support built into infrastructure. I have a deep wish that quality of life would be prioritized to scale.
Thank you for sharing all of these experiences. No one can erase our existence. It’s never lasted for long when tyrants try it. We’re still being born and living our lives.
It is SO much to navigate, and I too wish for - and hope we can someday have - more support from society at large. I'm so grateful for the friends who get it, and especially for other disabled folks who keep me feeling valued, validated, and motivated to educate, advocate, and fight.
“Maybe you manifested it. Maybe it’s white privilege.” God what a great line. So much maddening, heart-breaking truth in this essay. 💛🙏
Lol isn't it? I wish I'd come up with it. And thank you <3
“Your soul chose this!” That’s what I was told!
I was diagnosed with vascular Ehlers- Danlos- it has a freaking genetic mutation- and that STILL wasn’t enough for people to accept that I had legitimate health issues.
I wrote my response to them in a substack post entitled SOUL CHOICES,
but I will add— that my goal is neither to be an ableist to myself or others— NOR to allow my laundry list of diagnosis to define me.
For me personally- allowing myself to be defined and limited by my health issues a type of ableism in a way- if that makes sense.
I refuse to fight for my limitations while allowing myself the grace of those limitations.
I know that I suffer more when I focus on what I can’t do.
While I do NOT think I manifested this, I DO think our words can become a self-fulfilled prophecy— now, before you cancel me, please know I hear what sounds like a contradiction too. I don’t have the words to clarify yet- I can only tell you that doctors expected me to die in 2018 and I think a large part of why I’m still alive is because…
… I expanded the definition of what it means to be me- even with a diagnosis- without minimizing or dismissing it.
Thank for writing this powerful piece and allowing me to contribute to the conversation. I appreciate it.
No no no I get it! I think I'm picking up what you're putting down, and actually we're on the same page. It's a tricky line to walk - that line between toxic positivity and optimism/therapeutic positive thinking. That line between denial and trying not to wallow. That line between self gaslighting and using the mind-body connection to our advantage.
While I don't believe I manifested my illness, I also know that when I spend too much time thinking about illness, or when I ONLY think about the possibility of feeling this way til I die and not ALSO the possibility that maybe I won't, it not only makes me more miserable but my symptoms do get worse, because stress has a real effect on the body's systems, and those systems need as much help as they can get.
Thank you for chiming in. And also OMG "YOUR SOUL CHOSE THIS" is such quintessential New Age ableism it would be funny if it weren't so annoying.
Thank you, Molly. Yes, you really do get it. I appreciate that we see and hear each other. This is a hard club to be a part of but the people in it have the most depth, heart, humor, and intellect I’ve ever known. Gentle hugs, spoonie sister.❤️🩹
This is fantastic. Thank you for all the work I know must have gone into this! I'm part way through writing the first of a probable series of pieces called “A non-exhaustive list of things you can do to help”, because I published a piece about disabled grief last month and now I mostly grieve my faith in humanity, and had a lot of comments asking how they could build that hope back up. This is a really similar concept, to compile a list about ableism and some dos/don'ts! Great to see more resources being created and compiled and this is so well written x
Thank you so much for this, and for recognizing how much work it was. It actually took me two painstaking weeks to write it, while doing little else (including some days brushing my teeth). I'm glad that it resonates with you. That makes the work worth it. Your series sounds AWESOME and so needed. I really think people want to know how to help, and very much need to be told how, because what works for other kinds of illnesses or challenges so often doesn't work for us. I can't wait to see it!
That doesn't surprise me at all - thank you so much for spending the time and energy on writing it, it's genuinely so brilliant. I'll try and remember to tag you when my first list is published! ☺️
Please do!
Always such good, deep, well-worded insights. YES. Have been on both sides. It makes me wonder if there's some sort of shorthand on "how not to be ableist"—a quick way to gut check. 5 common pitfalls and why they hurt the people you're trying to help. Not to skip the work...but maybe to shortcut to the empathy? Am I thinking in copywriter?
Maybe you're thinking like a copywriter, but if so, you're a GENIUS copywriter because that's brilliant. Seriously - it's a great idea and we should make it! I actually think it could maybe be pretty simple...?
CO-LLAB!
BRO. Well Actually x Imperfect Working Order... stay tuned for the drop
Thank you so much for sharing your story and the links!
You’re so welcome! It’s truly my pleasure and honor. Thanks for reading!
Subscribed. 🌻
* watery eye emoji *
Thanks for allowing me a place at the table.
https://open.substack.com/pub/sagejustice/p/soul-choices?r=1ezxpl&utm_medium=ios
Thanks for coming over to dine!
Curious to know whether you've ever stumbled across the work of Michael Berube and Janet Lyon? They are cultural studies scholars who found themselves pushing their work into disability studies after the diagnosis of their son Jamie with Down's syndrome. I haven't looked them up in a while but I read a bunch of MB's pre-disability work in college and followed his blog in the 00s. (I have no strong recommendation here, literally just curious).
Oh interesting! No I've never come across them. Unless they were part of an "Activism Bootcamp" I participated in as part of ME Action, which was mostly a Disability Justice 101 class, with a little focus on ME/CFS specifically at the end, and I read an essay or something by one of them but am not remembering the name... it looks like Michael mostly writes books and Janet is doing the professor thing...? Which, btw, this tidbit from her bio is the most academia thing I've ever read:
"She has published widely on the literature and culture of modernism and is at work on a book linking the conceptual appearance of disability as concept with the coeval development of modernist aesthetics. She has delivered several invited talks on this subject, and recently published a portion of the project appeared in the flagship field journal Modernism/modernity: “On the Asylum Road with Woolf and Mew”"
Not that I'm complaining.
It’s a lot to navigate in a disabled body. I’m very grateful for loved ones who understand these realities. And there have been a lot of boundaries like the ones you’ve described that are necessary for a baseline of daily pacing and wellbeing.
I feel like we are beset upon just now and am wondering what the week will bring as the pain interrupts sleep.
You’ve probably seen these assessments where docs ask if we are afraid of the pain or afraid of it never going away. I’m not afraid of it, moreover exhausted and increasingly aware that life would be so much different with more networks of support built into infrastructure. I have a deep wish that quality of life would be prioritized to scale.
Thank you for sharing all of these experiences. No one can erase our existence. It’s never lasted for long when tyrants try it. We’re still being born and living our lives.
It is SO much to navigate, and I too wish for - and hope we can someday have - more support from society at large. I'm so grateful for the friends who get it, and especially for other disabled folks who keep me feeling valued, validated, and motivated to educate, advocate, and fight.