#spooniebookclub Review: ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties’ by Laurie Edwards

I am very excited for the first #spooniebookclub which is to be held tomorrow night at 8 P.M. (GMT) over on Twitter.  The first book that was chosen was one which we will all would relate to – a book which examines what it is like to live with a chronic illness – and as we were all under the age of 30 – this book seemed to be the perfect fit for us all.

Interestingly, after a discussion with a fellow book group member; we both felt that the writing style of the author felt rushed and forced as if she was merely writing down her thoughts as they came to her.  However, what if we were to look at it differently – as patients, we often have to wait a long time for answers; to get a diagnosis, wait for appointments.  So, isn’t it refreshing for a book about chronic illness to get straight to the point; to be concise and compact.  Each chapter is short, making it very easy to read little chunks when the reader feels up to it.  Fantastic for those like me who tire very easily but still like to read before going to bed.

The book I found was very relatable and encompasses the chronic illness experience beautifully – the author cleverly also uses several other patients and their personal experiences of living with chronic illness; each with a variety of different conditions.  In my opinion, this was a very smart move, as the range of conditions which can be considered as ‘chronic’ is large, and by including a variety of different conditions, the books feel even more relatable – if you are not able to relate to one person for a reason, then there will be another person included that you may relate your experience to.

The book encompasses everything that a person living with a chronic illness in their twenties and thirties are likely to experience in their life – leaving college or university and starting the path to their chosen career; making and maintaining friendships; starting romantic relationships and sustaining them, as well as the experience of chronic illness – hospitalisations, the patient experience both in hospital and in the ‘real world’.  Much of the book, I found reflected on life in the hospital – and as a someone with a chronic illness that does not require frequent hospitalisations, I felt that it somehow didn’t apply to my experience of illness.  However, the author does describe how ‘one of the only predictable things about chronic illness is its unpredictability‘; which I feel captures my experience of chronic illness beautifully – I never know how I am going to feel hour by hour, or day by day; and furthermore find planning activities and social gatherings very difficult as I never know if I will be able to attend, and if I do, often need to cancel such plans as I feel to unwell to go anywhere.

The only problem that I found with the book, is the obvious differences between the healthcare system between the UK and US.  Some of the book talks about the major financial implications that chronic illness causes; something which thankfully, we living in the United Kingdom have to worry about.  However, in contrast to this, the author also describes the relationships and contact with her medical team – often with patients being able to email or have easier contact when needed – which unfortunately does not encapsulate the experience with doctors or nurses here in the UK – instead my experiences have been one of long waiting times to see a medical practitioner, and having the hardest time to speak to a doctor even on the phone when things have become bad.

Overall, the book is very well written, and with the concise and compact chapters, makes it very easy to read in small chunks.  Reading it, I found some of my own experiences being fed back to me, as if ‘finally, someone understands exactly what I go through’.  The book was very easy to read, and managed to read the entire book in only a couple of days and really delves into the experiences of chronic illness that matter most in your twenties and thirties.

Has anyone else read the book?  What were your thoughts of the book?  You can share them here or on the ‘Spoonie Book Club’ Page which you can access on the top of the page.  Or you can even join us on Twitter at 8 P.M. (GMT) to discuss the book using the hashtag #spooniebookclub.