The way things happened, I didn't have a choice about going public with my MS diagnosis. Word spread pretty quickly amongst my rather large, but tight knit family that I had been admitted to the Neurology Ward in Beaumont Hospital in 2011. My main complaint at the time was blurred eyesight (optic neuritis, if you want to be technical about it). This, and other tests suggested that I had MS. A number of close friends also knew what was going on. As a result, I was showered with acts of kindness from my nearest and dearest, which still warms me three years later. Family knowing your business is one thing, but the wider world finding out is another.
When her-who-is-never-sick, didn't show up for work on a Monday and was missing for five weeks, it would have raised suspicions that there was something amiss. I did intend telling my closest work colleagues on my return to work. In the meantime, however, a well meaning colleague had mentioned my likely prognosis to a number of people. While I would have preferred to choose my own moment to tell, or not to tell colleagues, I didn't really mind. In fact, I was touched by their generosity, including a collection amongst work colleagues to pay for extra hours of childcare to allow me to rest (My children, twins, were then 3 years old).
In the intervening years, my children have become a right pair of comedians. I started sharing stories about their antics and questions on Facebook. People started to tell me that they looked forward to my Facebook posts. It was probably inevitable that I would write about MS at some stage. I wrote a reflective piece at Christmas time in the year of my diagnosis and had the odd moan when I was feeling particularly low. The day that I heard that Marie Fleming had died, I was terribly upset and wrote a piece in response to it on my Facebook page.
Soon after, a journalist in The Irish Examiner asked my to write about my initial diagnosis. I was chuffed to be asked – to think that someone would have the confidence in me to write for a national newspaper. But when I was writing the piece and read it aloud to my husband, I couldn't stop the tears. I knew I would be very publicly exposing some of my vulnerabilities. Still, I felt that if someone took comfort from my story, it was worth telling. I had an overwhelming response to the article, with strangers contacting my through social media, or tracking me down at work.
A local newspaper, The Kildare Nationalist reprinted the article a few weeks later. That was more difficult for me, as I knew that more people I knew woud read it. Funny thing was, that very few people mentioned it to me. There were times when I met people and I-knew-they-knew, but didn't say anything, but that's fine too.
I know there are people that are horrified that I have shared my experiences about having MS on social media. But I would argue that I didn't have a choice. You see, my personality type made me do it. Let me explain - I did a Myers Briggs personality type indicator test as a team building exercise at work a few years ago. Out of a possible 16 possible personality combinations, the test concluded that I am an ENFP (Extraverted/Intuitive/
The learning from that personality test was to appreciate other people's personality types. I am very aware of other people's boundaries and comfort zones. My openness about my MS diagnosis does make some people uncomfortable. Having said that, if what I write makes people uncomfortable, I would respectfully suggest that they don't read it.
When I got my MS diagnosis, taking care of my general wellbeing was emphasised. I've done all sorts of things, examining stress levels, diet, exercise, rest to improve my wellbeing. One thing that has really helped is writing. In my work life, I write all sorts of reports, funding applications, policy documents. Ironically though, I always enjoyed writing for work, but it didn't occur to me to write 'for me' until very recently. I guess that anyone who writes a blog does so to get some sort of reaction from the reader. I confess, I do get a buzz from comments and feedback from people. It makes me feel better. I also like the idea of documenting my stories for my children. I do not want to be defined by medical condition, so I hope to write about other things too.
MS diagnosis has given me a new sense of living in the moment. Occasionally I do worry about my long term health prospects, but my writing has helped me focus in the now. I hope that my writings, in some way, make it easier for people to talk about that which cannot be spoken.
This post was first published on Multiple Sclerosis Ireland blog site 'MS and Me' in April 2014
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