You’ve done it again Madelleine, another fantastic piece! I’m so constantly in awe of the way you show up and write such thought provoking pieces about being unwell.
The becoming your own bestfriend trope (as we’ve mentioned before) is so true I relate a lot. As you said - we end up having to spend the most time with ourselves! I resonate a lot to you saying that this level of friendship with yourself could only come with your symptoms & situations stabilised, and not feeling like you’re in a state of emergency. That too has only happened for my recently, I was definitely in a state of emergency & wanting to leave this earth because of the pain for a good 2 years. I have a much more peaceful & thoughtful relationship with myself now, but I laugh at the thought of saying this to myself a year ago. She would be fuming because she was just in so much pain. I guess she would also be slightly interested to see it has opportunity to change.
I spend a lot of my time journaling and having conversations with myself too. I often say I’m the coolest I think I’ve ever been right now, that I like myself the most I ever have after the turmoil of being so unwell. It’s an interesting place to be in. I think because the horror makes you feel like you know yourself so well. You end up having to be so connected to your body (not by choice) by monitoring your symptoms, noticing how different medications make you feel etc - I think this forces such a dramatically different relationship with yourself. And one that perhaps, for the first time, you’re connecting to yourself in ways that unless you’re stuck in a bed and can’t even shower or feed yourself don’t really happen. Like you said about the silent retreats (I’m howling at it only being all men who went.) I guess it’s about not being able to distract your mind. You’re forced to confront something so awful in complete isolation (with minimal support and basically no distractions), because you can’t move or do anything to take your mind off it. It’s like the most horrible way ever to have a spiritual awakening.
And yet, I am slightly grateful for it. Again though, at my sickest if I’d read something like that I would have screamed. It is only when things are a little safer can you mind explore such gratitude and thoughts within yourself. I’ve never trusted myself more than I do now, because after years of rigorous monitoring of my body I guess it makes me feel the most connected to it? Like I can read my body more? Even though we can appreciate it was a horrendous journey to get here. I find it makes me hold gratitude and resentment all at once for being unwell.
Thank you so much, Martha, for all your wonderful reflections. I love hearing your thoughts! And yes, it was so important for me to write that I needed to be out of the state of emergency before I could do this kind of healing! There really is a time and place for everything. I too am deeply appreciative of this experience and the work I have done on myself, and like you say it’s the most aweful road to spiritual awakening one can take. I think we’re damn awesome for what we have gone through!
I really enjoyed (?) reading this. You have articulated what I have been struggling with but have had difficulty conceptuallizing, especially the internalization of cold, cruel patriarchal capitalist “values” and how they compound the damage to our bodies.
I agree, about the cruel patriarchal capitalist “values” are a good way of summerising what Madelleine wrote. I completely agree that this compounds the damage to our bodies!
So relatable Madeleine. Thank you for wrapping tender words around this. I have very similar voices, and tbey aren’t great company when they’re the main companions we have. I notice when I can be gentler with myself I’m better at being gentle with other people.
Beautifully written as usual. I think being alone and loneliness is a fine line that I’ve personally teetered along, I wonder if your listening and soothing yourself is preventing the latter?
I find isolation difficult and often struggle with the sense of loneliness. I try and resolve it by using technology to connect with others (like here!), but I now ask myself if said loneliness is an inner issue!
For me, I’m not sure the self-soothing prevents the loneliness as such, it just makes it a tad bit easier to get through and live with. I too use technology to connect (and write here) which is also incredibly important, but for me the inner issue was important to look at too. Not that it’s either or in my opinion. I do find that connecting externally as gotten easier after I got a better relationship to myself, so maybe they go hand in hand…? And thank you for your reflections, it made me think too!
So it does and it doesn’t 😆 It’s nice to hear with persistence the self-soothing helps. I do it a bit, I find key is noticing my negative self talk as sometimes I just don’t! Thank you for writing as it’s got me thinking and reflecting on what I could do to improve my self connection, and then my outside connection.
I love the idea of becoming my own best friend. If my illness has taught me anything it is that I don’t really like myself. Or think I have worth. My ego is strong and intact, but now I have to spend so much time alone with myself I see how fragile my sense of self is, and how in this arena my ego is fairly useless. I need love and compassion from myself. I’ve spent many days in residential Buddhist retreats, which can be just as performative as yoga retreats, but I do think those practices help me to navigate my internal critics. I can’t really meditate because of fatigue, so I listen to Buddhist podcasts. But the idea of taking a feminist position in befriending myself, that is brilliant. I don’t have to be a Good Buddhist and pretend I have more insight than I do. Hooray. Thank you. I will share this post with my support group.
Thank you so much for sharing your experiences (and for sharing this post)! I have gone theough similar experiences as you re worth. So glad the Buddhist retreats helped you, I would love to go on one myself. I can’t do full on meditation either, I can do a bit of guided stuff, but I use the concept of meditation throughout my day and I have felt it more transformative than sitting for a long time in meditation. Love love love your reflection on taking a feminist position in befriending yourself, so glad you can use that. ❤️😍
The voice in my head. It's the one that says I'm not really that sick, that I should be able to get out and go if I just tried hard enough, that other people are judging me, etc., etc. I am heartily sick of that voice. Thank you for naming it and calling it out. This emotional turbulence may be as hard to experience as the actual illness, at least for me. I love your posts. Keep it up.
My experience is more that when we heal this in ourselves we don’t get as triggered by ableism around us… I think we will always experience it unfortunately.
I love the belief you have. I’ve come to see it as the anchor for our darkest days. Our ability to function in the way that we would like can be stripped from us, but our belief that this can change cannot.
I’ve become comfortable - accepting even -if people see me as naive or deluded now. My belief has always been unshakeable - to the extent that I believed I could be horrifically ill one month and would be fully well the next.
I can see now that this may look naive to others. And of course, it didn’t work out this way in that I was that severely ill and all of a sudden became well. But I am glad I had that belief nonetheless and that all the while I was creating little pockets of space in the hideousness of it all 🙏🔹
Thank you for this powerful and insightful piece. Although I'm an introvert who loves my alone time, I found the isolation of chronic fatigue one of the hardest things to deal with. I also resonate strongly with the voices that say, "you should do more" or "if you can do x, you can do y as well" and appreciate you calling them out as internalised medical gaslighting. I cope / have coped by connecting with nature, even if that's just through my window, and by reading articles and poems online. I've been working through mind-body coach Rebecca Tolin's programme for recovery from chronic illness and finding a lot of comfort, help and even improvement of symptoms there, through somatic and emotional work that can be done from my bed.
You’ve done it again Madelleine, another fantastic piece! I’m so constantly in awe of the way you show up and write such thought provoking pieces about being unwell.
The becoming your own bestfriend trope (as we’ve mentioned before) is so true I relate a lot. As you said - we end up having to spend the most time with ourselves! I resonate a lot to you saying that this level of friendship with yourself could only come with your symptoms & situations stabilised, and not feeling like you’re in a state of emergency. That too has only happened for my recently, I was definitely in a state of emergency & wanting to leave this earth because of the pain for a good 2 years. I have a much more peaceful & thoughtful relationship with myself now, but I laugh at the thought of saying this to myself a year ago. She would be fuming because she was just in so much pain. I guess she would also be slightly interested to see it has opportunity to change.
I spend a lot of my time journaling and having conversations with myself too. I often say I’m the coolest I think I’ve ever been right now, that I like myself the most I ever have after the turmoil of being so unwell. It’s an interesting place to be in. I think because the horror makes you feel like you know yourself so well. You end up having to be so connected to your body (not by choice) by monitoring your symptoms, noticing how different medications make you feel etc - I think this forces such a dramatically different relationship with yourself. And one that perhaps, for the first time, you’re connecting to yourself in ways that unless you’re stuck in a bed and can’t even shower or feed yourself don’t really happen. Like you said about the silent retreats (I’m howling at it only being all men who went.) I guess it’s about not being able to distract your mind. You’re forced to confront something so awful in complete isolation (with minimal support and basically no distractions), because you can’t move or do anything to take your mind off it. It’s like the most horrible way ever to have a spiritual awakening.
And yet, I am slightly grateful for it. Again though, at my sickest if I’d read something like that I would have screamed. It is only when things are a little safer can you mind explore such gratitude and thoughts within yourself. I’ve never trusted myself more than I do now, because after years of rigorous monitoring of my body I guess it makes me feel the most connected to it? Like I can read my body more? Even though we can appreciate it was a horrendous journey to get here. I find it makes me hold gratitude and resentment all at once for being unwell.
Thank you so much, Martha, for all your wonderful reflections. I love hearing your thoughts! And yes, it was so important for me to write that I needed to be out of the state of emergency before I could do this kind of healing! There really is a time and place for everything. I too am deeply appreciative of this experience and the work I have done on myself, and like you say it’s the most aweful road to spiritual awakening one can take. I think we’re damn awesome for what we have gone through!
The most awesome 💖💖
I really enjoyed (?) reading this. You have articulated what I have been struggling with but have had difficulty conceptuallizing, especially the internalization of cold, cruel patriarchal capitalist “values” and how they compound the damage to our bodies.
I’m so glad you ‘enjoyed’ the post! And yes, it’s so hard to get rid of internalised patriarchal messaging.
I agree, about the cruel patriarchal capitalist “values” are a good way of summerising what Madelleine wrote. I completely agree that this compounds the damage to our bodies!
So relatable Madeleine. Thank you for wrapping tender words around this. I have very similar voices, and tbey aren’t great company when they’re the main companions we have. I notice when I can be gentler with myself I’m better at being gentle with other people.
Exactly, I noticed too that when I’m gentle with myself I am more gentle with other people and more compassionate.
Beautifully written as usual. I think being alone and loneliness is a fine line that I’ve personally teetered along, I wonder if your listening and soothing yourself is preventing the latter?
I find isolation difficult and often struggle with the sense of loneliness. I try and resolve it by using technology to connect with others (like here!), but I now ask myself if said loneliness is an inner issue!
For me, I’m not sure the self-soothing prevents the loneliness as such, it just makes it a tad bit easier to get through and live with. I too use technology to connect (and write here) which is also incredibly important, but for me the inner issue was important to look at too. Not that it’s either or in my opinion. I do find that connecting externally as gotten easier after I got a better relationship to myself, so maybe they go hand in hand…? And thank you for your reflections, it made me think too!
So it does and it doesn’t 😆 It’s nice to hear with persistence the self-soothing helps. I do it a bit, I find key is noticing my negative self talk as sometimes I just don’t! Thank you for writing as it’s got me thinking and reflecting on what I could do to improve my self connection, and then my outside connection.
I love the idea of becoming my own best friend. If my illness has taught me anything it is that I don’t really like myself. Or think I have worth. My ego is strong and intact, but now I have to spend so much time alone with myself I see how fragile my sense of self is, and how in this arena my ego is fairly useless. I need love and compassion from myself. I’ve spent many days in residential Buddhist retreats, which can be just as performative as yoga retreats, but I do think those practices help me to navigate my internal critics. I can’t really meditate because of fatigue, so I listen to Buddhist podcasts. But the idea of taking a feminist position in befriending myself, that is brilliant. I don’t have to be a Good Buddhist and pretend I have more insight than I do. Hooray. Thank you. I will share this post with my support group.
Thank you so much for sharing your experiences (and for sharing this post)! I have gone theough similar experiences as you re worth. So glad the Buddhist retreats helped you, I would love to go on one myself. I can’t do full on meditation either, I can do a bit of guided stuff, but I use the concept of meditation throughout my day and I have felt it more transformative than sitting for a long time in meditation. Love love love your reflection on taking a feminist position in befriending yourself, so glad you can use that. ❤️😍
The voice in my head. It's the one that says I'm not really that sick, that I should be able to get out and go if I just tried hard enough, that other people are judging me, etc., etc. I am heartily sick of that voice. Thank you for naming it and calling it out. This emotional turbulence may be as hard to experience as the actual illness, at least for me. I love your posts. Keep it up.
Thank you so much, Lynne. And yes that voice is highly annoying!
I’m getting myself my first cane today and am so glad I read this. Thank you.
That is indeed an act of self-care 🌸❤️
“Yes, my inner critic is fatphobic and ableist” this is an insight I’ve found in myself this year.
For me, it’s been the dismissal and separation that exists within me - so too the judgement, criticism, ridicule, blame. It all goes on and on.
The conclusion I’ve reached (for now) is that until we each heal this within our selves, we will continue to experience it around us.
My experience is more that when we heal this in ourselves we don’t get as triggered by ableism around us… I think we will always experience it unfortunately.
On a greater scale it will take a coming together of many of us to bring about the greatest change in the longer term.
I believe this is possible but that we may only be at the beginning of creating such change.
And it first starts within ourselves. Which is right we’re at.
I don’t mind being called a dreamer though. Or even naive or deluded 😆
I agree with you and I believe in change 🌸
I love the belief you have. I’ve come to see it as the anchor for our darkest days. Our ability to function in the way that we would like can be stripped from us, but our belief that this can change cannot.
I’ve become comfortable - accepting even -if people see me as naive or deluded now. My belief has always been unshakeable - to the extent that I believed I could be horrifically ill one month and would be fully well the next.
I can see now that this may look naive to others. And of course, it didn’t work out this way in that I was that severely ill and all of a sudden became well. But I am glad I had that belief nonetheless and that all the while I was creating little pockets of space in the hideousness of it all 🙏🔹
Thank you for this powerful and insightful piece. Although I'm an introvert who loves my alone time, I found the isolation of chronic fatigue one of the hardest things to deal with. I also resonate strongly with the voices that say, "you should do more" or "if you can do x, you can do y as well" and appreciate you calling them out as internalised medical gaslighting. I cope / have coped by connecting with nature, even if that's just through my window, and by reading articles and poems online. I've been working through mind-body coach Rebecca Tolin's programme for recovery from chronic illness and finding a lot of comfort, help and even improvement of symptoms there, through somatic and emotional work that can be done from my bed.
Thank you for your words! And I’m so happy you’re finding stuff that works for you and your bodymind — especially from bed.