8 January 2014

Letters for Louise- update!

Hello everyone!

Well first of all- Happy New Year!

Back in September, I started a project to raise awareness of ME- what it's REALLY like, through the eyes of us who live with it day in, day out. After talking to a friend about the stigma surrounding ME,  how most of us experience disbelief, a lack of understanding and neglect, I decided to put together a book sharing our experiences. The idea is that ME sufferers write a letter (anonymously unless they ask to be named) to ANYONE who has shown hostility towards them about their ME. That could be medical professionals, friends, family, colleagues, society in general or anyone else who has affected them. I'm going to be self-publishing the book and all profits will be going to none other than the wonderful Invest in ME!

The project got off to a fantastic start and I was sent some beautifully written, heartfelt letters. As people wrote more and more letters, the shape of the book started to broaden; some people chose to write some very touching letters addressed to people who HAD been there for them, who had believed them and respected them, and what that meant to them. A couple of people have also chosen to write to their own bodies, to the ME diagnosis itself, which has been really powerful. Just to give you an example of how brilliant these letters are, here's a little taster:

'... You told me continuously that I had a confidence issue and that I just had to put mind over matter. Do you know how hard that made it for me? Do you know half the time that you caught me crying was because I was so scared of what you were going to force me to do next? I had so many horrible effects from that; extreme payback, all of which you completely ignored. And then you wondered why I wasn't getting better. The things you'd say made it out like I didn't want to get better.'

All of the letters that I have are fantastic: they are thought-provoking, honest and capture the frustration and anger that comes from this illness. Many have had me in tears! I'm seriously grateful to everyone who has taken the time and effort to contribute so far as the book is hopefully going to have a real impact. Which is why I'm so keen to launch it alongside ME Awareness Week in May! However in order to do this I need loads more letters, probably at least another 60 in order for this to really work.

So I'm sending out a big plea- if you or another ME sufferer that you know have had an experience that you want to be heard, to tell it how it really is, I'd love to receive a letter from you. It doesn't matter who you are, the severity of your illness or your path through life- I'm very keen to show how ME affects every single one of us. I've also now decided to include a section from those closest too us- loved ones and carers who watch us suffer, so if any of your nearest and dearest want to contribute then I would love to hear from them too!

This has all come at a particularly poignant time for me and my journey with ME. When I started this project I was suffering from quite a dip in my health- I'd had to leave my job that I loved and completely rethink my career due to the ME. But as the book has developed so has my situation- I'm now back at work in a manageable job that I think I love even more! So it would be really significant for me on a personal level to see this book do really well as many of the people who work really hard for Invest in ME have just inspired me to make the best of a bad situation. I'll be 25 in February and after having ME for far too many years I'd love (as we all would) to see a treatment or cure during my lifetime. So supporting Invest in ME's work by getting this book out there is massively important to me!

If you want to contribute, in order for me to meet my personal deadline of ME Awareness Week I'm asking for all letters to be with me by March 31st 2014. That'll give me time to put it all together and organise it to have the most impact. If you are on Facebook you can join the closed group Letters for Louise!  and if you aren't, or you'd prefer to email me, looby_louness@hotmail.co.uk is my address.

It's all very exciting- I just need more letters! I'm so grateful to everyone who has contributed so far and look forward to reading more- and of course sharing the finished book with you!

*for the original post about the Letters for Louise project - click here*