Always Open with a Joke

Jeremy asked, "How many people with MS does it take to put in a lightbulb?"

Ken did not know how many.

"Five million - one person to do it, and four million nine hundred and ninety-nine thousand nine hundred and ninety-nine to write depressing online web-logs."
- Douglas Coupland, “Eleanor Rigby” (2004)

I doubt that anyone else will have noticed, but I’ve realised that my recent writing – both here and on my own blog – has been… well, a little bit moany.

I know the instant gratification we can all get after firing off a complaining blog post or a #MSSucks Tweet – it’s only natural to seek validation from the people who GET what we’re going through.


Is HAVING A GOOD OLD MOAN really the Magic Bullet which scientists the world over are looking for in the search to find a cure for MS?

I’m guessing not. Similarly, does it make us feel any better in the long term? Does it help our friends / family / loved ones to see us complaining about how awful our lot is?

Please note, I’m not saying we’ve just got to pull ourselves together and get on with it (no British stiff-upper-lip from me). And as I said above, the instant validation from ‘our peers’ can be a wonderful thing.

But it can be a little too seductive to stay within the cloisters of the community. On the other hand, the MS Pledge which Christie mentioned recently is the kind of thing which can really be a powerful way to advocate and raise awareness.

Over the years, a frequent complaint I’ve heard from people with MS is that people who don’t have it don’t understand it.

In a way, maybe that’s our fault?

If we can’t explain it in a way which makes sense to others and which doesn’t give a window for them to say, “ooh yes I know, I get tired too”, we’re doomed to spend our lives talking to ourselves.

And if all we do (myself very much included in this) is write depressing posts about how much our life sucks, then we’ll just come across as whiny, weak and miserable.

I don't know about you, but that's not how I see myself.

The online community is comfortable and comforting because the inherent vagueness and fuzziness of MS is shared by everyone. There's enough commonality so that we can say that we get it.

But if we only ever talk to ourselves we're doomed to basically eat our own tails. And that's not massively healthy or helpful or proactive.

Being the office Grammar-nerd, here’s a quote which is (genuinely) pinned to the wall by my desk (next to a sheet on the use of the apostrophe - true!):

The actions of man proceed from their thoughts. In order to obtain the cooperation, the concurrence, the consent of others, we must communicate our thoughts to them. The means of this communication are words...
- William Cobbett, 1817

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