Published in InterAction 69, Autumn 2009
Shannen Dabson, age 14, from Essex, was one of a number of speakers with M.E. who gave presentations at the Royal Society of Medicine (RSM)’s ‘Medicine and me’ conference on M.E./CFS in London on 11 July. What follows is an extract from Shannen’s account. Read her full story online on our website under Faces of M.E.
My name is Shannen and I have had M.E. for 6 years. I found it difficult at first coping with the illness and other people’s reaction to it. I turned so quickly from a lively, popular girl into someone who couldn’t walk far, found standing impossible, couldn’t abide the smell of food cooking, bright lights or watching TV.
I wasn’t really living anymore. I had to be carried everywhere, I couldn’t even be alone on the toilet anymore once I started to have fits. I used to enjoy being top of the class, going to athletics, being in the swimming club and riding horses. I couldn’t imagine ever being well again.
Mum had bother with the school from day one. They refused to send newsletters, homework, cards or even invite me in for the school photo. It was like they’d written me off. The Head said that I was one of their brightest pupils and me being sick had messed up all their predictions.
The school wouldn’t tell us from one term to the next what they’d be studying to allow me to prepare or for
Mum to stock up at the library.
They’d have me carrying the classes’ heavy books and were supposed to let me go if I held up a red card. They’d stall. “After 5 minutes Shannen,” “After break Shannen,” “When your Mum gets here Shannen.”
Soon after this I found the doctors had missed a serious heart condition. I was effectively excluded for a while after this. The teachers wouldn’t let me in until the doctors said what exactly was wrong with me, meanwhile the doctors wouldn’t agree.
Before I got ill I’d always been gifted at maths so my mum started to teach me – often in the middle of the night as that was my most awake time. We just did a little every couple of days to stop me getting rusty.
At the end of Primary I had something like 0.5% attendance but I achieved all Level 5s – the top in my year group. Several parents asked my mum to tutor their kids to get them ready for secondary school!
I became the Young Advocate of the Tymes Trust which made me very proud. It also gave me confidence. I must have been doing something right to have been chosen.
I decided to take my GCSE in Maths. Unfortunately two months before the (exam) I was ill with thyrotoxicosis and had to pull out. However I persevered and passed my Maths and Religious Studies the next year.
This year I’ve taken four more. I study for a maximum of one hour in the afternoon, often not getting out of bed. You’d be amazed what can be achieved one-to-one.
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