And when I've had to say no to social arrangements, it's hard not to mope that I couldn't go. Sometimes I've wished that Julio could talk, reassure me, or have words of wisdom for those lonely times. At three AM when the pain wakes me up, or at bedtime when I have a panic attack just thinking of going to sleep and everyone's off line, I'm not calling anyone. While I'm slowly learning to ask for help when I need it, it's a lot easier to pick up a book when it's the middle of the night or I know I'm so crabby I should definitely not talk to anyone.
The thing is, until recently, many books dealing with chronic pain or illness (not all of them, just many of them) were
- Written by someone who wants to sell more than a book.
- Promoting some cure or another that may be great for some people but hasn't worked with RSDS/CRPS
- Written by a doctor, which can be good, but it doesn't always help with those lifetime issues which deal with the non-medical stuff.
- Written by someone who doesn't have a chronic illness and doesn't quite hit the issues I find myself struggling with
- Written by someone with chronic illness but not during their younger adult years
That is not to say I've never read a great chronic illness book, even some in some of these categories have been great and have helped me along the way. But I've always wished for someone to write about chronic illness as a younger person. Thankfully, I'm not wishing anymore!
I have lots of favorite bloggers, friends and hopefully soon to be friends whose writing reminds me that I'm not alone, suggests angles I haven't thought of and challenges me to approach my life in new ways. One of them recently published the book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties and I loved every word.
The author, Laurie Edwards, describes some of the many issues those of us who are ill and young face. She tackles issues like:
- How to deal with getting a diagnosis
- Making hospital stays easier
- How to deal with illness at school
- Listening to your body
- To Disclose or not to disclose, and if so, how much.
- Chronic illness on the job
- Chronic illness in relationships
I simply cannot do this book justice in just writing about the book, but I'll try. The things I liked most were Laurie's conversational style, her words based on her experience and the experiences of others whose words show up throughout the book, it's not too heavy or too light in tone, it's real with no edges smoothed over just to present everything in a positive life, the hopeful feeling I get from reading it, the short chapters which mean you can read the book in short spirts if concentration or physical ability get in your way and that I feel like I've just had lunch with friends who get it, even if I barely can get out of bed. I can't think of anything I don't like about this book.
If you have chronic illness or pain and need some help dealing with these issues or if you know someone who has a chronic illness (you're looking at one now, well at least the writing of someone), and you want to understand the decisions and questions we deal with, go get this book.
I give it six stars out of five!
You can check out more of Laurie Edwards' writing and buy the book, as well as viewing other reviews, by going to her blog
A Chronic Dose