A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 3 May 2017

The metre

Social media is increasingly becoming a brown and sticky Marmite-esque topic – love all the benefits or hate all the downsides.

For positive campaigning, bringing people together, offering support and providing information it's really great.

For negative comparisons, lack of human contact, time wasting or (not that I want to reference this man) FAKE NEWS it's very worrying.

And sometimes, in life's crappier moments, it can just be a really useful thing.

Recently I was contacted by a friend via the social media megatruck that is Facebook.

Although we've only met in person a few (mainly drunken) times, I've admired this person from an electronic distance for quite a while as judging by their posts it's clear they are great. From their chosen shares and interests, I thought we may also have a fair bit in common.

Unfortunately, more in common than I had imagined, as last week I had a message out of the blue saying they'd just received an MS diagnosis.

I am saddened every time I hear of someone receiving their non-negotiable entry into this club, but this one really touched me.

After a couple of messages we arranged to speak on the phone – and we talked for quite some while.

And apart from being right about thinking they are great, what struck me most was hearing my own voice from 13 years ago coming down the line – the shock, the fear, the questions and the floundering in a vast universe of unknowns.

Thirteen years ago my diagnosis was broken to me by a gp who really didn't have a clue about MS. My friend was given the news at the foot of a hospital bed infront of two medical students.

Otherwise, for both of us, that was pretty much it. As with too many others MSers I've met, we're told we have an incurable and progressive disease and then we're left to get on with it.

Yes, I have had good experiences with nurses and neurologists over the past 13 years, but my general feeling with this (as I suspect with many other chronic conditions) is that it's actually outside the medical community that we do most of our learning - whether that's through online forums or in-person support groups.

It's the network of new friends that we've unexpectedly made, it's the bonding discussions of shared experiences, it's the personal questions that we can ask them without fear or embarrassment. 

It's the grace under pressure, the dark frontline humour and the genuine understanding that help get you through.

Building this MS world of connections and friendship – be it through social media or in person – is like creating an intricate shimmering filigree which can surround and support you.

And when you do find yourself in the non-Marmite brown and sticky stuff, this delicate web can spin itself into a pretty strong safety net.


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