Friday 25 October 2019

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.

One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.


  1. the thing is that, the very attitude Mr S was referring too is *always* going to get that response from people who subscribe to it... by definition. It's all they know. If that's how they cope, fine... but by reacting angrily like that, they are denying other people's right to view their own MS differently, aren't they?

  2. i know, i know, i know - but where does it end? i think it's like Schrödinger's cat - both opinions are equally valid AND invalid at the same time.

    anyway, never mind all that - i was just sitting at my desk eating a Nature Harvest granola bar and it has gone EVERYWHERE.

    where's MY support group?