Multiple sclerosis: writing to beat the disease
At the time of diagnosis, a chronic illness is a tsunami and a long-term challenge thereafter. Having a love of the arts or sport can make acceptance easier. For me, putting my woes into words has always helped me.
As a teenager, I always loved writing: writing enabled me to distance myself from my feelings, which are particularly intense when you’re 15! Writing about my feelings became even more important when I was diagnosed with multiple sclerosis (MS) 20 years ago. I was only just 20, I was studying medicine and laying the foundations for my future life. This particularly disruptive disease, with its unpredictability and symptoms, upset all my plans and hopes, and putting my doubts and anxieties down on paper helped me a lot at the time. There are therapeutic benefits, probably because it helps you take a step back and look at what’s happening with greater objectivity: the fear and distress stayed partly on paper, and I felt better.
I recently found my notes again, and I really felt for the young girl that I was at the time. Simply because I’m happy now, even if there are of course still some difficult times. I have found a balance, which seemed difficult to imagine at the time. So, if this article can help anyone who has just been diagnosed, so much the better: what I want is to send a message of hope. Yes, you can have MS and still have a nice life! Of course, it’s more complicated than some people’s lives, but just as rich, or even more so, because we don’t get bogged down in trivia, we focus on life’s essentials: love, humour, friendship.
A balance thanks to my blog
The blog which I write on the site Sep-ensemble is one of the reasons for my current balanced state: every week I share my experience of everyday life with MS. Sharing this with other patients is really therapeutic, as it helps me to make sense of everything I have lived through for 20 years. My flare-ups will not have been pointless because I can draw on them to provide advice which might help others to live better with their symptoms. And that does me a lot of good, probably because first and foremost I’m a medic, and even if I’m not practising, I still have the need to help others. So, instead of practising medicine, I’m doing it differently thanks to my articles, and that fills me with joy.
And also, writing about some symptoms has made it easier to accept them, for example my cognitive disorders, which I struggled to accept for several years. By putting down, in black and white, the reasons why I agonised over them, why I violently refused to accept them, I have come to understand things about myself, and these things enabled me to put the symptoms into perspective.
But I don’t just write about myself; that would be very restrictive. I talk about the lives of other patients after interviewing them, and they are always full of insights. Everyone deals with living with the disease in their own way, co-existing with it, and their experiences broaden my horizon and that of my readers, I hope. I have always been curious about other people, I like to discover them and understand how they function and how they live. My curiosity has been largely satisfied thanks to these portraits of patients.
In my view, every patient can find a hobby or a passion which helps them: sport, the theatre, dance, writing, painting or anything which makes them feel good and helps them to express emotions and feelings which are sometimes repressed.
So, let go, experiment with different things until you find what soothes you, helps you unwind or transcend the everyday.
To help your neurologist better understand you and your priorities, complete our Talk to Your Doctor Guide.