So glad I found you here (from a sweet comment you made on one of my Notes about being a late bloomer and getting my first collection of poetry published at age 60). First of all, I love your entire feed and the concept of Moving Mystic. You may have noticed that my newsletter is called Mystic Musings. Kindred spirits, indeed.
As for invisible disability, I actually had this my entire life because it was born with an immunodeficiency disorder, and have to avoid germs, crowds, overdoing it, unless I get sick with some sort of infection, which tends to hit me order longer than most people. I have almost died 20 times and stopped counting at 20. I choose now to focus on living and enjoying each moment with gratitude and presence. A year ago, a pneumonia turned into asthma, which then turned into triggering granite, fatigue syndrome, which I had had for 20 years since contracting one oh to become moderate to severe, which doesn’t sound that bad, right? I mean, how can moderately fatigue be bad? Moderate means housebound, means almost no social activities, means needing to literally ask others to shop for me and Sevier means bedbound. I actually do have to ask others to do more for me, so my experience is a little different in that sense, however, the overall experience of people looking at me and thinking I’m fine, and some people taking it personally that I have to say no to invitations, and then I cannot give and do as much for others as I would like to can cause social difficulties as well as professional limitations, big time. Unfortunately, I am not able to do much movement at all less post exertion delays and a crash. Send me back to bed for Weeks. But I try to wave small amounts of women into the day, and before I got this disabled here, though, I used to do yoga, tai chi, and she go on a daily basis. I hope to be able to get back to that again because movement is life. I also really loved to dance and have even DJ at ecstatic dance events. I really should share some of my ecstatic dance Spotify playlist here! I look forward to diving into one of your writings and I subscribe to you with a smile and send you bright blessings and blissings.
Wow, thank you Sage for your long and personal reply!
I’m glad my work resonates with you, and indeed we have many interests in common - mystic, movement, dance, Qi Gong...
In shamanic ways we would say: 20+ moments that it wasn’t your time! I’m so glad you are still here, managing your wonderful-challenged body in the best ways you can, and sharing your gifts with such heartfelt presence. I appreciate you!
Thanks for clarifying the difference between moderate fatigue, being housebound, and severe fatigue being bed bound. Unfortunately you are not alone in that, again something we don’t hear enough about!
Asking others for support is such a big ‘threshold’ - and communicating about this isn’t straightforward. This is what my next Sunday essay will be about… I’d love to hear your reflections on that too!
Remember that breath is movement too, if all else feels too much; through breath you can connect to your inner life and the world around you…. Sending love and courage! Eline
Your vulnerability in naming the unseen struggles of invisible disability is both courageous and deeply validating for many. Thank you for this with us and I will soon read the other articles.
I also have a personal question I wanted to ask, I left it inbox, when you have time please check it out.
Haha Nora Ann, that’s hilarious! Reminds me of Zoe Faust’s character in Gigi Pandian’s Accidental Alchemist series. She’s 300!
I’m so glad you enjoyed this essay, it comes from deeply lived personal experience with an auto immune condition on the rheumatoid spectrum, and I do feel called to give voice to living in a body that doesn’t meet expectation! Thank you for co-creating this space together!
Yikes, sorry about the typos! I was trying to edit my comment and accidentally it got posted, and I don’t see a way to edit comments. *severe *Chi Gong *movement *playlists etc. Hopefully you got the gist of what I was saying. Thanks! 🙏
Another wonderful post in a series of posts that are speaking very deeply to my soul! Words fail me (I'll have to find a way to respond through a movement message!)
Thank you! Yes wouldn't that be great? We need Embodied Intelligence (in addition to Artificial!), and ways to reply in movement. Absolutely brilliant idea. Video is great, but... of course has its own limitations...
Thank you for writing about this. I identified with it so much, and it helps me feel less wrong and weird as a sensitive who also has chronic pain. You stated the struggles so well.
Hi Anne, thank you for letting me know, and sorry that you recognise so much of it! I'm glad it helped though to reconnect with your own experience and knowing you're not alone! I'm already working on the next post - would love to hear what types of things you are interested in reading more about, then I can weave them in over the coming weeks! If it's too personal to share here, just send me a private message!
Why should we have to explain ourselves if we do not want to? Being let go or asked to step down should be against the labor code and you could of maybe discussed this further with your boss to maybe switch hours or go to part-time and someone else then has a part-time job also. I have fibromyalgia and arthritis and anxiety and I am not ashamed anymore to share with anyone as we all have different abilities to share with the world now days and if others cannot understand that, it is on them not us.
Thanks for sharing about your experience and insights Sue! I totally agree, and - in this case there were lots of different dynamics that made the situation more complex. I'm interested in keeping the dialogue open, and not shutting the door, but that is not always easy!
Thank you, you express this dilemma so well. Having also had to navigate similar issues I have learnt the absolute necessity of self-care and being true to myself and my own limitations. Glad you’re bringing these issues to light.
Thank you for sharing this Linda, that means a lot! Sometimes even what’s needed to be true to oneself can be confusing… it’s not an easy or straightforward thing… let’s encourage each other to find life-affirming ways forward!
(My reply just disappeared so you might get part of it twice! The mysteries of Substack)
I DO encourage you - it can feel like a tightrope juggling act to find the right balance between following the path we feel called to and respecting our limitations. I'm sorry to hear about these people who cancelled a contract with you because you expressed your needs - quite shameful in my view - you're probably better off not working for them.
I am now in the lucky situation of being old enough to receive my state pension, which has meant I can let go of some of my work and make choices that are more in alignment with my energy and needs. It hasn't always been so easy though, and my body is now paying the price for sometimes taking on too much.
It's also a great pleasure for me to be able to say - I loved doing that but I don't need to keep doing it - someone else, a former student perhaps, is doing that piece now. And you Eline are offering the Sealskin-Soulskin workshop so I don't feel the need to!!
Do take good care of yourself - that should be every woman's priority, though not always easy or even possible, I know.
Hey Linda, thanks so much for replying even twice, after your first message disappeared! Yes, tightrope is a good work. I love this work so much, and often it doesn't feel like work at all. Not like my academic career :-). It's a gift to craft my Wild Soul Centre, and I'm doing that with sustainability in mind, for body-heart-mind and energy... So important! I'm glad I'm continuing the torch of dancing with stories... Big gratitude! Eline
So glad I found you here (from a sweet comment you made on one of my Notes about being a late bloomer and getting my first collection of poetry published at age 60). First of all, I love your entire feed and the concept of Moving Mystic. You may have noticed that my newsletter is called Mystic Musings. Kindred spirits, indeed.
As for invisible disability, I actually had this my entire life because it was born with an immunodeficiency disorder, and have to avoid germs, crowds, overdoing it, unless I get sick with some sort of infection, which tends to hit me order longer than most people. I have almost died 20 times and stopped counting at 20. I choose now to focus on living and enjoying each moment with gratitude and presence. A year ago, a pneumonia turned into asthma, which then turned into triggering granite, fatigue syndrome, which I had had for 20 years since contracting one oh to become moderate to severe, which doesn’t sound that bad, right? I mean, how can moderately fatigue be bad? Moderate means housebound, means almost no social activities, means needing to literally ask others to shop for me and Sevier means bedbound. I actually do have to ask others to do more for me, so my experience is a little different in that sense, however, the overall experience of people looking at me and thinking I’m fine, and some people taking it personally that I have to say no to invitations, and then I cannot give and do as much for others as I would like to can cause social difficulties as well as professional limitations, big time. Unfortunately, I am not able to do much movement at all less post exertion delays and a crash. Send me back to bed for Weeks. But I try to wave small amounts of women into the day, and before I got this disabled here, though, I used to do yoga, tai chi, and she go on a daily basis. I hope to be able to get back to that again because movement is life. I also really loved to dance and have even DJ at ecstatic dance events. I really should share some of my ecstatic dance Spotify playlist here! I look forward to diving into one of your writings and I subscribe to you with a smile and send you bright blessings and blissings.
Wow, thank you Sage for your long and personal reply!
I’m glad my work resonates with you, and indeed we have many interests in common - mystic, movement, dance, Qi Gong...
In shamanic ways we would say: 20+ moments that it wasn’t your time! I’m so glad you are still here, managing your wonderful-challenged body in the best ways you can, and sharing your gifts with such heartfelt presence. I appreciate you!
Thanks for clarifying the difference between moderate fatigue, being housebound, and severe fatigue being bed bound. Unfortunately you are not alone in that, again something we don’t hear enough about!
Asking others for support is such a big ‘threshold’ - and communicating about this isn’t straightforward. This is what my next Sunday essay will be about… I’d love to hear your reflections on that too!
Remember that breath is movement too, if all else feels too much; through breath you can connect to your inner life and the world around you…. Sending love and courage! Eline
AbSOULutely!
(((HUG))) 🤗
Your vulnerability in naming the unseen struggles of invisible disability is both courageous and deeply validating for many. Thank you for this with us and I will soon read the other articles.
I also have a personal question I wanted to ask, I left it inbox, when you have time please check it out.
thank you for sharing it resonated with you - I don't know your name yet... - I'll check out the inbox too and reply there!
The more I read about you and your bio, I think you must be 200 years old to have amassed all of your studies and talent!
This is the best post I have read about invisible disabilities. Informing others without eliciting pity or sounding like self-pity is a real dance!
Thank you for your tremendous free contribution to humanity with your articles, videos, and of course holding space for HSP's everywhere!
Haha Nora Ann, that’s hilarious! Reminds me of Zoe Faust’s character in Gigi Pandian’s Accidental Alchemist series. She’s 300!
I’m so glad you enjoyed this essay, it comes from deeply lived personal experience with an auto immune condition on the rheumatoid spectrum, and I do feel called to give voice to living in a body that doesn’t meet expectation! Thank you for co-creating this space together!
Yikes, sorry about the typos! I was trying to edit my comment and accidentally it got posted, and I don’t see a way to edit comments. *severe *Chi Gong *movement *playlists etc. Hopefully you got the gist of what I was saying. Thanks! 🙏
Absolutely, I know! My favourite typo was “she go” for which I assume was Qi Gong! Yes she go!!! Let’s all go, and she especially :-)
It was!!!
Bwahaha!!! 🤣
Another wonderful post in a series of posts that are speaking very deeply to my soul! Words fail me (I'll have to find a way to respond through a movement message!)
Thank you! Yes wouldn't that be great? We need Embodied Intelligence (in addition to Artificial!), and ways to reply in movement. Absolutely brilliant idea. Video is great, but... of course has its own limitations...
Thank you for writing about this. I identified with it so much, and it helps me feel less wrong and weird as a sensitive who also has chronic pain. You stated the struggles so well.
Hi Anne, thank you for letting me know, and sorry that you recognise so much of it! I'm glad it helped though to reconnect with your own experience and knowing you're not alone! I'm already working on the next post - would love to hear what types of things you are interested in reading more about, then I can weave them in over the coming weeks! If it's too personal to share here, just send me a private message!
Why should we have to explain ourselves if we do not want to? Being let go or asked to step down should be against the labor code and you could of maybe discussed this further with your boss to maybe switch hours or go to part-time and someone else then has a part-time job also. I have fibromyalgia and arthritis and anxiety and I am not ashamed anymore to share with anyone as we all have different abilities to share with the world now days and if others cannot understand that, it is on them not us.
Thanks for sharing about your experience and insights Sue! I totally agree, and - in this case there were lots of different dynamics that made the situation more complex. I'm interested in keeping the dialogue open, and not shutting the door, but that is not always easy!
Thank you, you express this dilemma so well. Having also had to navigate similar issues I have learnt the absolute necessity of self-care and being true to myself and my own limitations. Glad you’re bringing these issues to light.
Thank you for sharing this Linda, that means a lot! Sometimes even what’s needed to be true to oneself can be confusing… it’s not an easy or straightforward thing… let’s encourage each other to find life-affirming ways forward!
(My reply just disappeared so you might get part of it twice! The mysteries of Substack)
I DO encourage you - it can feel like a tightrope juggling act to find the right balance between following the path we feel called to and respecting our limitations. I'm sorry to hear about these people who cancelled a contract with you because you expressed your needs - quite shameful in my view - you're probably better off not working for them.
I am now in the lucky situation of being old enough to receive my state pension, which has meant I can let go of some of my work and make choices that are more in alignment with my energy and needs. It hasn't always been so easy though, and my body is now paying the price for sometimes taking on too much.
It's also a great pleasure for me to be able to say - I loved doing that but I don't need to keep doing it - someone else, a former student perhaps, is doing that piece now. And you Eline are offering the Sealskin-Soulskin workshop so I don't feel the need to!!
Do take good care of yourself - that should be every woman's priority, though not always easy or even possible, I know.
Hey Linda, thanks so much for replying even twice, after your first message disappeared! Yes, tightrope is a good work. I love this work so much, and often it doesn't feel like work at all. Not like my academic career :-). It's a gift to craft my Wild Soul Centre, and I'm doing that with sustainability in mind, for body-heart-mind and energy... So important! I'm glad I'm continuing the torch of dancing with stories... Big gratitude! Eline