Thank you for sharing this Sara, so brave and beautifully written. We need to hear these stories so we can understand more about life in other people's experience. Your honesty and the way you think are some of my favourite things about you. Oh, and your skin, your skin is beautiful!
I am livid, for you, for my closest friends, for a no-where-near-as-awful - but still, the same response I received when going to my beloved doctor after a year of unexplained deep exhaustion.
I'm livid for the insane expense of being our own diagnostic team and all the out of pocket tests and therapies we try to regain our collective lives.
I am livid daily, for women.
One of my best friends is bed ridden with a litany of those same diagnosis's you are struggling with.
She taught me about the "Millions Missing" protest for ME/CFS, which is just one of them.
I share it because millions of folks do suffer.
I may be even more livid because my eventual diagnoses was NOT one of these illnesses, it was something much simpler, something doctors already believe in, yet the years lost to being believed and heard were still there & the exhaustion has put me in a compromised immune state. I can't imagine what it must feel like to not be believed for decades.
There are so many of us close to the tipping point.
Folks with these illnesses are our best helpers in informing others and teaching us how to do our best to back ourselves away from the edge.
I want to say to all of you, if you find yourself not rebounding like you should, tasks that create even subtle adrenaline in your body and then leave you feeling so much more depleted than you normally would, it is imperative that you REST.
After our lovely podcast talk the other day Sara, I was exhausted & depleted. I was confused as to why, and then my spouse reminded me that I was excited and prepped for the talk and that my body just can't recover from simple things, even the good ones, like it used to. I can't imagine what things like this must do to your body.
You are so brave for sharing & in continuing to reach out towards small joys. You are not alone. We are not alone.
I’m so sorry that it’s all so, well, something. Difficult doesn’t cover it, sad neither. There should really be a word for the shit storm that reduces brilliance, but there isn’t. And even that description is incredibly reductive.
I’m glad that you can still find hope and beauty in the minimalist time that you have and sometimes a bit of fury is necessary fuel (I think without it, my life would have ended, it was oddly the anger that drove me for a long time, not hope).
Thank you for sharing this with us. I daily tell myself the lie that I am lazy rather than limited. I don’t know if that’s for the benefit of others or myself and that concept in itself is only just becoming apparent to be one that I need to get to the root of to move forward. But thanks to you, I know it is a lie.
In answer to who wants a coach that lost half her business, me! I do. Because it’s not that you lost half of it, it’s that you had the spark to keep far more than many of us can muster in the first place despite the struggles.
Because you are a warrior Sara, and an inspiration.
And I’m sorry in many ways that you have to be but please know that in your struggle, your strength has helped SO many. A small consolation if any at all, I’m sure. Saviour of the sick after all is not a glamorous title, but the encouragement that you share is far more help than many of the hours I and many others have spent in doctor’s offices.
Sending love. And happy to bring Savoury Danishes and cake over any time you’re up to it. X
What a powerful, beautiful, devastating piece of writing, Sara. And one that resonates with the women in my family on many levels. In admiration of the way you write and capture the beauty in amongst your very real, very crippling health conditions. Sending love x
Sara, this is so unfair. How can this still be going on? But I have known you for 15 years and I am so happy you often choose to use those 4 precious hours in our company 😍
I don't know you personally but I love your work and your energy to shed light on these stigmatized illnesses and symptoms. I feel seen and supported through that and even if I don't read here often (although I always wish I had more "time" to do that), your posts always get me to realize some fundamental truths about me and our society.
Thank you so much for telling us about the extent of your illness, I really wasn't aware that it was this bad. Writing this must have been so hard and make you feel so vulnerable, I am so truly grateful that you were strong enough to publish this post.
By the way, I have been livid about the sexism in medicine for a while now and I think I was made aware of the issues through your podcast a few years back. I have been more careful in selecting the doctors I visit and more vocal about things that don't add up to me ever since. Thank you! 🫂
Sara, thank you for sharing your story so openly, so vulnerably. Thank you for trusting us with this message. I am angry. My insides boil. For you, for your family, for us all. ♥️
Sara, wow, thank you so much for finding the most beautiful of words to describe the s*#test of things 🧡 In your 4 hours, your are nothing short of incredible - you inspire and motivate so many people 🧡
I am livid. It’s not ok. It’s so unfair & I hate that the response is just “we don’t know”.
Fwiw just know in your 4 hours a day you’re still somehow more magical than anyone else I know. Love you.🤍
Thank you for sharing this Sara, so brave and beautifully written. We need to hear these stories so we can understand more about life in other people's experience. Your honesty and the way you think are some of my favourite things about you. Oh, and your skin, your skin is beautiful!
I am livid, for you, for my closest friends, for a no-where-near-as-awful - but still, the same response I received when going to my beloved doctor after a year of unexplained deep exhaustion.
I'm livid for the insane expense of being our own diagnostic team and all the out of pocket tests and therapies we try to regain our collective lives.
I am livid daily, for women.
One of my best friends is bed ridden with a litany of those same diagnosis's you are struggling with.
She taught me about the "Millions Missing" protest for ME/CFS, which is just one of them.
I share it because millions of folks do suffer.
I may be even more livid because my eventual diagnoses was NOT one of these illnesses, it was something much simpler, something doctors already believe in, yet the years lost to being believed and heard were still there & the exhaustion has put me in a compromised immune state. I can't imagine what it must feel like to not be believed for decades.
There are so many of us close to the tipping point.
Folks with these illnesses are our best helpers in informing others and teaching us how to do our best to back ourselves away from the edge.
I want to say to all of you, if you find yourself not rebounding like you should, tasks that create even subtle adrenaline in your body and then leave you feeling so much more depleted than you normally would, it is imperative that you REST.
After our lovely podcast talk the other day Sara, I was exhausted & depleted. I was confused as to why, and then my spouse reminded me that I was excited and prepped for the talk and that my body just can't recover from simple things, even the good ones, like it used to. I can't imagine what things like this must do to your body.
You are so brave for sharing & in continuing to reach out towards small joys. You are not alone. We are not alone.
Thank you for the importance of this writing.
I’m so sorry that it’s all so, well, something. Difficult doesn’t cover it, sad neither. There should really be a word for the shit storm that reduces brilliance, but there isn’t. And even that description is incredibly reductive.
I’m glad that you can still find hope and beauty in the minimalist time that you have and sometimes a bit of fury is necessary fuel (I think without it, my life would have ended, it was oddly the anger that drove me for a long time, not hope).
Thank you for sharing this with us. I daily tell myself the lie that I am lazy rather than limited. I don’t know if that’s for the benefit of others or myself and that concept in itself is only just becoming apparent to be one that I need to get to the root of to move forward. But thanks to you, I know it is a lie.
In answer to who wants a coach that lost half her business, me! I do. Because it’s not that you lost half of it, it’s that you had the spark to keep far more than many of us can muster in the first place despite the struggles.
Because you are a warrior Sara, and an inspiration.
And I’m sorry in many ways that you have to be but please know that in your struggle, your strength has helped SO many. A small consolation if any at all, I’m sure. Saviour of the sick after all is not a glamorous title, but the encouragement that you share is far more help than many of the hours I and many others have spent in doctor’s offices.
Sending love. And happy to bring Savoury Danishes and cake over any time you’re up to it. X
What a powerful, beautiful, devastating piece of writing, Sara. And one that resonates with the women in my family on many levels. In admiration of the way you write and capture the beauty in amongst your very real, very crippling health conditions. Sending love x
And lividness!
Sara, this is so unfair. How can this still be going on? But I have known you for 15 years and I am so happy you often choose to use those 4 precious hours in our company 😍
I am furious that the health system is failing you, and I can’t wait for your nightie business - please find some big ones! X
I don't know you personally but I love your work and your energy to shed light on these stigmatized illnesses and symptoms. I feel seen and supported through that and even if I don't read here often (although I always wish I had more "time" to do that), your posts always get me to realize some fundamental truths about me and our society.
Thank you so much for telling us about the extent of your illness, I really wasn't aware that it was this bad. Writing this must have been so hard and make you feel so vulnerable, I am so truly grateful that you were strong enough to publish this post.
By the way, I have been livid about the sexism in medicine for a while now and I think I was made aware of the issues through your podcast a few years back. I have been more careful in selecting the doctors I visit and more vocal about things that don't add up to me ever since. Thank you! 🫂
Sara, thank you for sharing your story so openly, so vulnerably. Thank you for trusting us with this message. I am angry. My insides boil. For you, for your family, for us all. ♥️
Sara, wow, thank you so much for finding the most beautiful of words to describe the s*#test of things 🧡 In your 4 hours, your are nothing short of incredible - you inspire and motivate so many people 🧡