I can only speak for my experience of caring for a chronically ill person I love, rather than experiencing chronic illness myself. I am reading it to because as a subscriber to Grace’s newsletter, I have found her wisdom immensely helpful for finding ways through difficult times, as well as helping me feel more confident in supporting someone else better.
As well as being a thorough guide to navigating diagnosis, healthcare and support, and the associated emotions, this book is beautifully written. I particularly enjoyed the section on ‘The Forest of Feelings’, which felt like a wonderfully articulated way to express the muddle of grief, isolation and anger that seems to come with the change that chronic illness brings. Ideas about living in the now, rather than planning for when things might be ‘better’, have enabled me to move on from unhelpful comments, and made it easier to provide what is actually needed. The validation of the acknowledgement that healthcare services do not (for a variety of reasons) necessarily provide the help and support that they might and the advice of navigating those, was appreciated. I am glad that other people might read this and then may not have to figure out the strategies Grace suggests, because we found it exhausting and frustrating.
Overall, I know I will come back to this book again and again, and find different things in it depending on where we are on our journey.