This is a hell of a memoir in the making ... there's a selflessness that runs throughout your story, up to and including the idea of writing about your lived experience to help others; whether it is those of us who need to find ways to walk in other folk's shoes, or people who have the same battles with the world of medicine as they try to understand their own conditions. Brave words, beautifully written.
This part really got me: “Being chronically ill in the United States sees to it that you live hand to mouth and have nothing much to show for yourself materially speaking—no house, no land, no savings. No things that you grow up believing are the mark of adulthood.” I’m looking forward to reading more - as you uncover answers to the questions you’ve raised. You’ve been dealt a difficult hand - and in a country that doesn’t provide much support - but ultimately what I feel here is a sense of hope (and that may just be the thing that helps others). Looking forward to reading more!
Thank you so much for reading and for your thoughtful comment. I definitely plan on writing more about the financial aspects of what it’s like to live with chronic illness in the US. There is so much ground to cover!
My goodness, Amy, what a story you have! And so well articulated. Having had an invisible illness, I understand only too well that reaction 'you don't look sick'. I will catch up with the rest of your posts and look forward to continuing on the road with you.
This is a hell of a memoir in the making ... there's a selflessness that runs throughout your story, up to and including the idea of writing about your lived experience to help others; whether it is those of us who need to find ways to walk in other folk's shoes, or people who have the same battles with the world of medicine as they try to understand their own conditions. Brave words, beautifully written.
Thank you so much 🙏 Revision is such hard work (and lots needs to be done re: THIS work), but I’m bound and determined.
Gather all the encouragement you need from us and others
This part really got me: “Being chronically ill in the United States sees to it that you live hand to mouth and have nothing much to show for yourself materially speaking—no house, no land, no savings. No things that you grow up believing are the mark of adulthood.” I’m looking forward to reading more - as you uncover answers to the questions you’ve raised. You’ve been dealt a difficult hand - and in a country that doesn’t provide much support - but ultimately what I feel here is a sense of hope (and that may just be the thing that helps others). Looking forward to reading more!
Thank you so much for reading and for your thoughtful comment. I definitely plan on writing more about the financial aspects of what it’s like to live with chronic illness in the US. There is so much ground to cover!
My goodness, Amy, what a story you have! And so well articulated. Having had an invisible illness, I understand only too well that reaction 'you don't look sick'. I will catch up with the rest of your posts and look forward to continuing on the road with you.