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