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*

Letters for Louise

Louise and boyfriend Rob

I consider myself to be very lucky; I have some very special people around me who are and have always been amazingly supportive of my ME. They are incredibly understanding - they never question my ability to do things, whether it is on a good day or a bad day, and are never offended if I need to go off and rest. Actually, they’re usually the ones who pick up on my fading energy levels and leave me to it. They understand that if I spend a couple of hours out with friends, I’ll have spent three days either side building my strength up and then recovering. I’d be lost without them.

I was talking to a friend a few weeks ago about what it’s like dealing with ‘the other side’; those people who DON’T understand. The ones who think that all we are is tired, that it’s all in our heads. The ones who think that by exercising and thinking positively, we can somehow cure our neurological condition. I explained that to me, sometimes it’s worse living with the misbelief, the lack of understanding and the stigma surrounding ME than it is with the physical symptoms.

Louise in hospital 

I’ve personally found it really difficult being fairly young and having ME. I developed it after getting tonsillitis as a teenager and never really getting better. And it took a stupidly long time to get a diagnosis so for ages I thought it was just me. I never really did the whole student nightlife thing at university and struggled to keep pushing to live a demanding, energetic life like those around me. I’m now 24, and even though I’ve had ME for a number of years now I still struggle to adapt my life to one that doesn’t make me very ill (I ended up bed ridden for six months following a big push to finish my teacher training like those around me). And throughout that time, I’ve come across plenty of people who don’t believe me- some of whom are really close to me. Even if they’ve never necessarily said anything, I think you just know; you have that instinct. And as a lot of you will understand, it leads to so much frustration because you just want to convince people so much that you really do want to get better. That’s all you want. I’d never in a million years imagined that there could be an illness that takes such a cruel hold on your life and affects your social life, your relationships, your career and your feelings of self-worth so dramatically - yet still be neglected so much by society.

It occurred to me that so many people feel like this too and if only there was a way of lots of us explaining it to those who question ME then it might have more of an impact and lead to more understanding. I then had an idea about putting together a book of letters from ME sufferers addressed to anybody who has shown them disbelief or misunderstanding; it could be to friends, family, colleagues, health professionals, society in general - anyone. As I thought about it more and more I decided that I could publish the book, either as a hard-copy or as an e-book, and donate any money from it to Invest in ME who do so much for us. And hopefully, it could become quite a valuable resource for helping those who aren’t knowledgeable or understanding of ME see what it’s like from reading the hard truth from lots of us coming together.

This is where I need help - I need people as many people with ME as possible, whether mildly affected or very severely ill (or somewhere in between), to write a letter to be included in the book, addressed to anyone they like. You can write as much or as little as you like; as guide the ones I’ve had so far have been between one and two pages long but it is completely up to you. All the letters going into the book will be made anonymous, so names will be changed and there will be no link back to you - unless you say otherwise, that’s fine too. There is no pressure and no rush; my target is to get things together so that I can publish it before / in time for ME Awareness Week 2014, but again that’s a target.

I’ve been so moved by the letters that have been sent my way so far and so comforted to know that we’re going through this together - they’ve all been brilliant. So please be as honest and as open as you feel comfortable!

If you want to write a letter, I’ve made a closed Facebook group called ‘Letters for Louise!’ where you can post your letter if you want, or there are details of how to send it to me. You can also email it to me at looby_louness@hotmail.co.uk

Thank you so much in advance, and I’m really looking forward to sharing the finished book with you!

Louise Harding