I’d firstly like to express my gratitude to those of you who have written to me about the way in which you were diagnosed with Multiple Sclerosis. I’ve had 22 letters and I’m truly grateful. If there are others of you out there still thinking about writing a letter, please do! I’d love to hear about your experience also.

The letters have all been powerful and I thought it might be useful to share some extracts from the first two I received, in order to illustrate this.

On the 26th of January I received a letter from John, which said, ‘The young man – so many men are young compared to me these days – seemed to be excited by the fact that he’d identified my ‘issue’, but equally as embarrassed by having to tell me that those dark lesions on my cerebellum indicated that I had officially entered a whole new world.’ John finished his letter by writing, ‘Grey days brighten with the right support.’

That same day I received a letter from Y. I’ve picked a few extracts from it to give you a flavour of her experience. She wrote, ‘Very calmly, I asked her what she was thinking. ‘MS,’ she replied. I felt nothing. I closed down. She referred me for an MRI – another long wait…   The MRI went by in a blur of emotional (rather than physical) numbness. An hour later, when my aunt and friend had popped out for a coffee, I was called into the consulting room. A different, Eastern European registrar showed me my MRI scan. I looked at some white patches, like mould or lichen on my brain scan. ‘We believe you have MS,’ he said in a thick accent…   I am now a different person, four years on. I accepted the illness as part of me, eventually…   I now live a richer life ; poorer, financially, but so much richer in terms of compassion for myself and others.’

I believe that all the letters I’ve received offer those who don’t have Multiple Sclerosis an important insight into what it’s like to go through the diagnosis process.

Many thanks!

Gillian

Tasha says, ‘I’m not getting up until you write a letter.’

I’m doing an editing and publishing project for my MLitt in creative writing and I’m looking for volunteers. Please write me a letter telling me about your MS diagnosis and a little about yourself (up to 800 words) and send it to  gshirreffs@yahoo.com .

Many thanks!

Gillian

Hamish says, ‘I’m not getting down until you write a letter!’

I’d love if you would help me by writing a letter (max 800 words) describing yourself and your MS diagnosis. Please see the post below to find out more.

Many thanks!

Gillian

I’d really appreciate your help! I’m studying for an MLitt in Creative Writing and as part of my course I need to do an editing and publishing project. I’d like to base my project on the way in which people find out they have Multiple Sclerosis – how the news is broken.

Personally, I was first told I probably had the disease by a neurologist who visited me about ten hours after I was admitted to hospital in the middle of the night – having phoned NHS 24 to say I couldn’t feel my feet or my legs. After taking my medical history and examining me, she said, ‘I’ll be amazed if you don’t have MS.’

I didn’t have a clue what MS was. In my shock (I’d thought I had a trapped nerve), I couldn’t even think which disease the initials referred to. It was then another two months, an MRI and a lumbar puncture, before a different neurologist sat me down in his office and gave me a diagnosis of MS.

Our diagnosis stories often go untold and I think that’s a shame. I’d like to hear the stories other people have to tell about how the news was broken to them. I’m therefore asking for volunteers to write letters to me, describing the way in which they were told they had MS.

This is where YOU come in! Please write to me in the format of a letter… Dear Gillian, I am writing to tell you about the way I was told I have MS…

I’d love if you could also write a little bit about yourself – before and after diagnosis – but I would ask that your letters are no more than 800 words long.

I understand that some people might want to remain anonymous, so if you’d rather, simply signing off with your first name would be great.

I’m not sure how many letters I’ll receive, which makes it a little difficult to plan my project. If (fingers crossed!) there’s a great response, it might not be possible to publish all of your letters in this small book. If that happens, I plan to organise an event where all the letters can be displayed.

My hope is that by the end of this project, with your help, we will have created a book of letters that brings to life the people behind the statistics. If you’re interested in participating, please email a copy of your letter to me at  gshirreffs@yahoo.com  before February 28^th.

Many thanks!

Gillian