Thank you, all of this really resonates (I have multiple chronic illnesses). I learnt a lot thanks to my ill health, but yeah like Megan, I could have done without learning it all this way. I like to say that I wish I could only retain the wisdom and let the pain, fatigue, and suffering go away.. Far far far away.
Hello! Im so glad I found this article through Instagram and look forward to reading more of your substacks. My name is Payton, and I am 25 years old living with Lupus SLE. Getting diagnosed last year was one of the most soul crushing but also relieving moments of my life, somehow simultaneously. Learning that the pain and suffering that I was experiencing had a name helped me to confirm that it was real, and not just something I had somehow convinced myself of for years. But knowing that there is no cure and that it will always be this way has been heartbreaking. I resonate a lot with the idea of living in the moment. I’ve accepted that I can try to plan out my days and weeks, but ultimately I never know if or when I’m going to have a “good” day, and that having to cancel plans is okay, and not something that I really have control over. This book sounds like it could be immensely healing, especially as it’s extremely hard to find anyone who understands what I’m going through at my age, because most of my peers are healthy and not sick. I often feel alone on this journey but it’s always nice to hear that there are people out there that do understand. 💜
Long-time reader, first time commenter 🙂 I think I found your writing one day because we share the same name haha.
I am wrestling with that weird limbo that is my husband’s undiagnosed chronic fatigue and pain. The ambiguity can be suffocating for me. Life is so fragile. I bear a lot of weight as a (willing) caretaker and manager of many appointments, details, and phone calls. There are few things harder, though, than watching someone you love suffer and being able to do so little. We’re limping into a murky unknown. I’m hoping there’s some light ahead, at least. Anyway. Guessing I’d benefit from the book 🤍
Hi there ❤️ this really spoke to me today, thank you so much for the thoughtful writing. I’m currently living through an extremely tenuous and disorienting moment of medical uncertainty with my dog. A few weeks ago, she was diagnosed with IMHA which is an autoimmune disease that involves her immune system attacking and killing her red blood cells. It’s incurable but treatable, although response to treatment and success can vary wildly from dog to dog. From the very start of this, she has been somewhat of a medical anomaly, an “atypical” case of IMHA. The doctors have given her tremendous care, but at every turn there’s ambiguity, uncertainty, and guesswork. I’ve come to terms with the fact that I may never get a clear answer as to why this happened, what’s going on with her, and whether we have done enough. She’s been subjected to a staggering array of diagnostic testing and medication, but even after weeks there’s no indication that her body is going to respond to treatment. After getting a blood transfusion this weekend, she’s developed a blood clot in her leg and is prone to develop another one at any moment. We’re faced with this question: how much more can we ask of her? I don’t know what the right thing to do is. I feel very moved by your description of this book and I think it would give me some space to sit in the confusion of this moment.
Thank you, all of this really resonates (I have multiple chronic illnesses). I learnt a lot thanks to my ill health, but yeah like Megan, I could have done without learning it all this way. I like to say that I wish I could only retain the wisdom and let the pain, fatigue, and suffering go away.. Far far far away.
Thank you, great post as always.
Very good
Hello! Im so glad I found this article through Instagram and look forward to reading more of your substacks. My name is Payton, and I am 25 years old living with Lupus SLE. Getting diagnosed last year was one of the most soul crushing but also relieving moments of my life, somehow simultaneously. Learning that the pain and suffering that I was experiencing had a name helped me to confirm that it was real, and not just something I had somehow convinced myself of for years. But knowing that there is no cure and that it will always be this way has been heartbreaking. I resonate a lot with the idea of living in the moment. I’ve accepted that I can try to plan out my days and weeks, but ultimately I never know if or when I’m going to have a “good” day, and that having to cancel plans is okay, and not something that I really have control over. This book sounds like it could be immensely healing, especially as it’s extremely hard to find anyone who understands what I’m going through at my age, because most of my peers are healthy and not sick. I often feel alone on this journey but it’s always nice to hear that there are people out there that do understand. 💜
Long-time reader, first time commenter 🙂 I think I found your writing one day because we share the same name haha.
I am wrestling with that weird limbo that is my husband’s undiagnosed chronic fatigue and pain. The ambiguity can be suffocating for me. Life is so fragile. I bear a lot of weight as a (willing) caretaker and manager of many appointments, details, and phone calls. There are few things harder, though, than watching someone you love suffer and being able to do so little. We’re limping into a murky unknown. I’m hoping there’s some light ahead, at least. Anyway. Guessing I’d benefit from the book 🤍
Hi there ❤️ this really spoke to me today, thank you so much for the thoughtful writing. I’m currently living through an extremely tenuous and disorienting moment of medical uncertainty with my dog. A few weeks ago, she was diagnosed with IMHA which is an autoimmune disease that involves her immune system attacking and killing her red blood cells. It’s incurable but treatable, although response to treatment and success can vary wildly from dog to dog. From the very start of this, she has been somewhat of a medical anomaly, an “atypical” case of IMHA. The doctors have given her tremendous care, but at every turn there’s ambiguity, uncertainty, and guesswork. I’ve come to terms with the fact that I may never get a clear answer as to why this happened, what’s going on with her, and whether we have done enough. She’s been subjected to a staggering array of diagnostic testing and medication, but even after weeks there’s no indication that her body is going to respond to treatment. After getting a blood transfusion this weekend, she’s developed a blood clot in her leg and is prone to develop another one at any moment. We’re faced with this question: how much more can we ask of her? I don’t know what the right thing to do is. I feel very moved by your description of this book and I think it would give me some space to sit in the confusion of this moment.