You have beautifully put into words what so many of us have lived, without invoking pity. Awareness is a powerful thing. Rock on fellow rugged badass. 🔥🎸🔥
Honestly, the past two years have kind of cracked something open. I’ve been white-knuckling this idea that I can just perform normal. Keep up, push through, look fine. And I’m finally at a point where I’m like… I can’t keep holding that mask up. It’s exhausting and it’s not honest.
So I’m trying to do this thing where I actually accept my limitations instead of fighting them, and figure out what a genuinely joyful life looks like from where I actually am.
Thank you for writing this. Seriously. It matters. And you are not alone. ❤️
Here I am nodding along fervently. This line sums up so much of my state of being, “Much of the time, I didn’t carry awareness of pain, only the exhaustion that was the result of being a person who walked around in pain all the time.”
I always knew that what I felt was different, but I struggle to articulate it in a way that someone without chronic illness and pain could understand. And honestly I don’t know if it’s possible for anyone to truly get it without having lived it- and I wouldn’t wish it on my worst enemy.
The strength it takes to simply exist in a world that feels like it’s always trying to kill you, and to make some kind of peace with that existence, gives you perspective on what really matters in life- one that healthy people simply never get the chance to know.
Mastering the art of living in a state of consistently unknowable health status (even if well managed), means you’re always on guard. It heightens so many other senses and I think as much as I don’t know my own body sometimes, I can say I know it far better than most people will ever know theirs.
Each night you go to bed and think about what worked or hurt and what didn’t that day. You hope it all works tomorrow. You make futile deals with your body, begging for some level of consistency you could plan around. But you never actually know.
Learning how to surrender and when to fight? Thats where the superhuman power comes into play. Because it’s a mind game as much as a physical one. We’ve proven we can handle the physical pain. We can work through it and do amazing things with our lives. But not allowing it to permanently break your mind? Figuring out when and how to scream mercy, to push through, to give yourself grace, to scream and cry, to find joy or peace in the hardest moments, to rest or reward, to simply keep going- that’s where the strength comes in.
Thank you for sharing this. Here’s hoping for more good days than bad. 💕
I love you so much! You are a rockstar. I admire you, I look up to you and your resilience, you grace, your empathy. Thank for sharing all this with us.
I am currently reading a book by K.J. Ramsey: The Place Between our Pains - A Memoir of What Joy Can Survive, that delves into a woman's journey with chronic illness and autoimmune diseases. Her story resembles the struggles that you have described here.
I admire your raw honesty and the strength that you've shown over the years to press on despite your pain, to write books that have brought so much joy to me and others.
Thank you so very much for the detailed explanation Allison. I saw the post, knew you had a chronic illness (which I had assumed was singular), and figured your “flamed out” was a result of something I didn’t quite understand.
I had no idea you have dealt with these complex chronic issues since childhood! You truly are one rugged warrior.
I must say, now that I know more about you and what you deal with on a daily basis, I am inspired to view my health issues differently. I appreciate that you chose to share this. Thanks again!
You have beautifully put into words what so many of us have lived, without invoking pity. Awareness is a powerful thing. Rock on fellow rugged badass. 🔥🎸🔥
Different flavors for me, but I know this place.
Honestly, the past two years have kind of cracked something open. I’ve been white-knuckling this idea that I can just perform normal. Keep up, push through, look fine. And I’m finally at a point where I’m like… I can’t keep holding that mask up. It’s exhausting and it’s not honest.
So I’m trying to do this thing where I actually accept my limitations instead of fighting them, and figure out what a genuinely joyful life looks like from where I actually am.
Thank you for writing this. Seriously. It matters. And you are not alone. ❤️
Wow my brilliant, rugged friend! Loving you more than ever. ❤️
Here I am nodding along fervently. This line sums up so much of my state of being, “Much of the time, I didn’t carry awareness of pain, only the exhaustion that was the result of being a person who walked around in pain all the time.”
I always knew that what I felt was different, but I struggle to articulate it in a way that someone without chronic illness and pain could understand. And honestly I don’t know if it’s possible for anyone to truly get it without having lived it- and I wouldn’t wish it on my worst enemy.
The strength it takes to simply exist in a world that feels like it’s always trying to kill you, and to make some kind of peace with that existence, gives you perspective on what really matters in life- one that healthy people simply never get the chance to know.
Mastering the art of living in a state of consistently unknowable health status (even if well managed), means you’re always on guard. It heightens so many other senses and I think as much as I don’t know my own body sometimes, I can say I know it far better than most people will ever know theirs.
Each night you go to bed and think about what worked or hurt and what didn’t that day. You hope it all works tomorrow. You make futile deals with your body, begging for some level of consistency you could plan around. But you never actually know.
Learning how to surrender and when to fight? Thats where the superhuman power comes into play. Because it’s a mind game as much as a physical one. We’ve proven we can handle the physical pain. We can work through it and do amazing things with our lives. But not allowing it to permanently break your mind? Figuring out when and how to scream mercy, to push through, to give yourself grace, to scream and cry, to find joy or peace in the hardest moments, to rest or reward, to simply keep going- that’s where the strength comes in.
Thank you for sharing this. Here’s hoping for more good days than bad. 💕
Stunning piece of writing, Allie. It's amazing that through it all, you've put beautiful books and music into the world!! Sending love.
You really are the strongest person i know.
I love you so much! You are a rockstar. I admire you, I look up to you and your resilience, you grace, your empathy. Thank for sharing all this with us.
love you, friend - thanks for being so open <3
i’m not worried about you, but now I’m curious why I should be or not.
I already knew you were a badass. Only after reading this, however, do I begin to comprehend the magnitude of your badassity. Wow.
I am currently reading a book by K.J. Ramsey: The Place Between our Pains - A Memoir of What Joy Can Survive, that delves into a woman's journey with chronic illness and autoimmune diseases. Her story resembles the struggles that you have described here.
I admire your raw honesty and the strength that you've shown over the years to press on despite your pain, to write books that have brought so much joy to me and others.
Thank you so very much for the detailed explanation Allison. I saw the post, knew you had a chronic illness (which I had assumed was singular), and figured your “flamed out” was a result of something I didn’t quite understand.
I had no idea you have dealt with these complex chronic issues since childhood! You truly are one rugged warrior.
I must say, now that I know more about you and what you deal with on a daily basis, I am inspired to view my health issues differently. I appreciate that you chose to share this. Thanks again!
I hope one day I can meet you. 🫶🤗💜