This books arrival was timely. Not only is it Vasculitis Awareness Month but also the 10 years anniversary of finishing my last course of chemo to control the inflammation in my brain, cerebral vasculitis. I thought when I was diagnosed after I completed this treatment I would step back into my old life. I was wrong as chronic illness is not like that. Life is never the same. This is a book I wish I was given at the time, as it gives realistic expectations of a new life with a chronic condition, tips to help you on your new journey and how to keep your smile.
Book Review:Chronic Illness Learning to Live Behind My Smile by Jane L. Edwards
Title: Chronic Illness Learning to Live Behind My Smile
Author: Jane L. Edwards
Release Date: 1st July 2019
Genre: Non-fiction, Self care
Purchase Link: Amazon
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The problem with a long-term chronic illness is that it isn’t a quick fight, taking a few drugs and having a couple of weeks in bed will not cure it. It isn’t ever an out and out win. You never beat the illness forever. It is a long-term war, some battles you lose and some you win: It is an on-going campaign. It is a chronic illness, after all. The struggle is about getting to a place where you can live together, the illness and you. Trying to make the most of the environment you share, an attempt to make it a positive life.This book is a collection of experiences I have faced living with a chronic illness. Lessons I am still learning from and having to deal with every day. It is like living in no man’s land, somewhere between feeling ill and feeling healthy, but not really being healthy or sick. I hope, by sharing my experience, I can help others with their journey. Help people to deal with their chronic illness or give some tools to help make some sense of living with a chronic condition. Note: several sections of the book talk about the U.K. health system NHS.
At the beginning of this book Jane says it contains the information she wishes she had at the beginning of her journey; she has achieved this goal completely. I wish I had this book when I walked out of the hospital with a diagnosis of a rare disease and chronic illness. It would have helped knowing how things are, tips to avoid the pitfalls and smooth the curves along the way. Chronic illness can be a lonely journey and it would have helped having something like this on my side to refer to even if it was just reassurance that I was doing okay and the best I could do at that moment.
Her words resonate with me and like her I am several years into my journey with a chronic and rare disease which has made me find my own ways to cope. Many of them are similar to hers. Reading this book earlier may have given me a short cut to some. I love the quotes includes especially the poem by William Ernest Henley, and have taken it to heart as my message to myself. This was one of those books I nearly committed a crime against books and highlight important passages (post it notes have been used instead). Her thoughts on the health care system, industry and health care workers mirror mine. It is easy to read and her warmth and humour shines through. It includes her story, tips and support on how to deal with yourself, friends and doctors. It is her story but I think it will help many. I would love this to be available to people who need it and to doctors, and nurses dealing with patients. It would help so much.
Thank you so much for my copy, Jane L. Edwards so I could give my honest opinion. It will be on my forever shelf for reference and recommended to those I think would benefit.
Happy reading and stay safe!