Creating your own narrative about it and writing it out of you, is the least judgmental, most beautiful, controlled way to tackle the ugliness of a neurodegenerative illness like MS. It allows you to open your heart and mind without having to worry about any backlash of family and friends because once finished, YOU decide what to do with your words. Publish it online, turn it into videos or delete it, the choice is yours.
Research has shown that writing can help boost your immune system, and anxiety, traumatic events, stress and depression can be softened by writing about your experiences. My late GP in fact acknowledged that since I began putting pen to paper, he was not seeing me as much as before, and if I did need his help, he found me in a better state.
Of course, some prefer yoga, mindfulness or other ways as they fear they are just bad at writing and it'll never help. I dare anyone to try. Just put some thoughts on paper today, go back to it tomorrow and maybe expand on why you feel the way you do. Keep going until you can fill your document or journal 30 minutes each day and soon enough, you will see some changes taking place in your thought patterns.
Not everything can be managed or emotionally healed by writing, and it's OK to have bad days - I'm sure my favourite authors James Joyce and W. B. Yeats had plenty of them - so go through the motions of life with MS on paper as best as you possibly can.
When I decided to start my own blog Ireland, Multiple Sclerosis & Me in 2011, my only goal was if only one person would say, “I needed to hear this” my goal would be met. Since then I have been more than willing to fight for others who don't have a voice as it has helped me enormously. MS Ireland, Novartis and Teva picked me up as a blogger and MS advocate. Also, my own blog has been a finalist alongside that of the MS Society in the Ireland Blog Awards several years running. One of my blogs, '3443 Needles' was about changing DMTs, and it won the Blog Post of the Year Award in 2018! If an expat from Belgium with English as a third language can do it, imagine what you, a native English, speaker, can do.
Writing is a relaxation technique that you can do anywhere and anytime, even on your phone. In fact, this post was written on my mobile. I do prefer writing with pen and paper, but if the inspiration floats in, a mobile phone can be a lifesaver!
References
Writing as Healing and Self-expression, an Introduction - MS Focus
Multiple Sclerosis, Writing to Beat the Disease - MS, One to One
Multiple Sclerosis Patients Cope, Heal Through Writing - News Press
Letter to My MS, 2014 - Willeke Van Eekhoutte
A Harsh Letter to My MS, 2022 - Willeke Van Eekhoutte
MS, The Lies We Tell Ourselves, 2023, about not always speaking up about what ails us - Jon Frederickson
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