When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find.
Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.”
She introduced her Humans Multiple Sclerosis project to the Irish Minister of Health and received a small government grant to develop her original Selfie Book idea.
The first MS symptom you ignored, thinking it was just a nasty bug.
Others that made you take notice of your body, and perhaps make you think that something was not quite right.
The endless list of doctors you saw because you were either going stir crazy or imagining things.
The hospital that subjected you to a battery of medical tests and gave you that resentful spiel about “Your old life as you once knew it, is truly kinda over”.
That fateful day you went home with an extra persona attached to your mind, your brain, your spinal cord or optic nerves.
The realisation that for a while after your MS diagnosis, your closest friends, family and colleagues also had MS because different aspects of your life seemed affected.
And yet, despite people rallying around you, in some sick and twisted way, you felt utterly alone because only you knew what it felt like to have MS.
Eventually, you start asking yourself agonising questions like, “Will I be able to keep on working?” Or, “What about my kids, will they see my eventual decline?”
However, what if there was something out there that could give you an emotional lift? Something to show you that regardless of your diagnosis, life with MS doesn’t have to be like those first few weeks post-diagnosis?
Joan’s answer was simple.
Real words from real people who sat in that very diagnostic chair where you just heard “You have MS.”
Diagnosed yesterday, last week or last month. Time frames don’t matter.
You are newly diagnosed.
Like myself, Joan heard the same three words. She was gobsmacked, or in her own words, “Receiving my MS diagnosis was life-changing. I think it’s not unlike asking someone from my Mother’s generation where they were when JFK was assassinated. For me- when Princess Diana died. It’s a moment in life when everything stops and shock and disbelief sets in. I remember the day I left the hospital, not only did I have to carry out my suitcase with me, but also my new multiple sclerosis diagnosis.”
With the €5,000 lottery grant from the Irish Minister of Health Simon Harris, Joan’s Humans Multiple Sclerosis project kicked off, uses photography, video and answers to three questions about people’s own diagnoses:
1. What is your name and where are you from?
2. How long have you had MS?
3. What would you say to someone who has just been diagnosed?
It’s that simple, yet so effective and inspirational.
At the end of the project, Joan plans on sending the book to every neurologist in Ireland to show them how far their newly diagnosed patients have come, and which lessons they have learned. Spreading the word about the book as widely available as possible by having the already existing Facebook page, will no doubt, help maximise its reach.
After all, we are all in this together, and any diagnosis should make you feel like you are in control, knowing that life with MS is not the end of the world.
This book is just the start of your new journey, one where the wider MS community will be there to walk next to you. Or, in Joan’s words, “I hope you will come on board and help make diagnosis a bit less traumatic for those trying to navigate the waters of MS.”
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.