I have often wondered why I would have wanted to torture myself by writing a book about my experiences with the rare auto immune condition Immune Thromboctyopenia (ITP). After all, since I was diagnosed in July 2006, ITP has given me some of the most painful moments of my life. It has tested my mettle, my patience, my sanity, and my physical well-being. It has hardly been a walk in the park for my wife and family either.
Well, the answer is actually in three parts.
Firstly, I found that writing about my ITP was therapeutic. This sounds a bit like advice from Dr. Frasier Crane, the not so eminent psychologist in my favourite TV comedy, Frasier. But I am convinced it has helped. Revisiting some of the events of my ITP journey reminded me of exactly what did occur. Much of what was happening around me at the time went by in a complete blur or in a scribbled diary entry.
Secondly, I am sure writing about my ITP may raise understanding of this mystery condition. Like most ITP sufferers, I had never heard of it before I was diagnosed. I certainly had no idea what the symptoms were. Anything that I can do to raise awareness, I am more than willing to try.
I have always believed that if you have a story to tell that you think will help other people then you should tell it. The only way we can learn from each other and advance our knowledge is to share our experiences, good and bad.
Finally, I am hopeful that my story may have helped other ITP sufferers and their families better navigate the journey that we have all been sent on.
There is no Sat Nav, standard map or guidebook to get us through our individual ITP expedition. However, by telling my story I am sure that others have found it informative, occasionally amusing, often painful but certainly honest and definitely positive.
The main issues that I found with writing the book were concerned with what to leave out rather than what to include. There was much agonising over the editing of the many drafts that I made.
A key problem was making sure that I didn’t want to alarm people too much about the realities of living with ITP, but at the same time I wanted to be as open and honest as possible. So it was a question of balancing that equation and it did prove tricky.
There were a number of my more harrowing experiences that I left out of the book, mainly because I did not think that it would be comfortable or in any way helpful for other ITP patients to read about them. I did not want to create panic, but I did hope to inspire, reassure, and encourage.
So whilst I found that writing the book was not too demanding, I did find the editing process laborious, agonising, and time consuming.
I was fortunate that I had kept reasonably good records of everything that happened to me on my ITP journey. I noted most things down in a diary as I went along and my wife also kept a journal for me to refer back to. We also had some gruesome pictures of my many ITP war wounds to remind us about the times and places of my worst experiences.
In terms of writing a book, I had never thought that I would tackle anything quite as big as a project. I had written numerous articles about my ITP for the ITP Support Association’s magazine The Platelet, and I had a number of items published in local newspapers and other sources like The Open University.
However, having completed my book I have subsequently continued writing about my ITP journey via a regular blog, and I have a couple of ideas for books in the future if I can get my act together and discipline myself to start typing them up. Writing is my second most important hobby; reading is my first.