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.

However…

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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Comments

View Comments (4)
  • SarahJ
    5 years ago

    I try in my life to remain positive and upbeat. I always have – pre-diagnosis too! I understand that we can feel depressed. There are pains, set backs and horrible fatigue that affects our whole lives. I get it. Trust me I do. But – So much of what we see out there from other people diagnosed with MS is complaining, depressing, sad, upset and NOT PRODUCTIVE. I stopped attending my support group when for the 100th time they all tried to bring me down too. And really – how sad is THAT? Aren’t support groups meant to support?

    When I happily announced my husband and I had bought our first house, a two story in CA – I was shocked when all the comments I received were by people telling me it was stupid to buy a two story house. What was I going to do, after all, when I couldn’t walk up the stairs! Um. I can now, and when – possibly in the future I may not be able to – we put in a chair lift! Or heck – get another house. Why go to the negative?

    Same thing from a different group when I announced that my husband and I had been successful with fertility treatments and were going to have a baby. I was so hurt by people telling me it was cruel of me to have a child I would not be able to keep up with. They told me I was purposely giving birth to someone who was more likely to suffer from this disease, like I was. Here’s my point – MAYBE NOT! We don’t know – maybe…but maybe not.

    I try to stay positive and hopeful about my life and others with this disease. We should be promoting that in each other – to each other. That’s what SUPPORT means to me.

    I am glad that people writing on here are not always looking at the negative. A lot is though. I skip those articles.

  • Steve Woodward author
    4 years ago

    Sorry, but I’ve only just seen this comment – don’t know why I missed it.

    Anyway, I just wanted to say thanks – my neurologist told us to stay away from support groups when I was first diagnosed, because they can turn into “disability competitions” and can be utterly depressing. Sounds like he was right!

  • Gale L
    5 years ago

    Those of us who can write decently should do what we can to help. My fingers work much better than my legs these days.

    On the complaining front, I’d always wondered why the upper lip had to be stiff, as the lower lip always seems to be the trembly one…

  • Matt Allen G
    5 years ago

    I DO believe that it’s up to those of us who can write decently to help others with MS find the right way to describe something (such as a symptom) to their families because it IS difficult. I am pretty good with words, adjectives and analogies (or so I think) but even I get stumped now and then trying to explain an MS feeling to someone who does not have MS. It’s like this; How do you explain the difference between colors to someone born blind? I know this mostly targets a small part of what you wrote but that bit really stood out to me.

    As far as complaining? I try not to but I have my moments where I realise “wow, I am just complaining about EVERYTHING” so I TRY to catch it and if not be positive be NEUTRAL. Keyword TRY haha…

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