Monday 5 August 2019

no sympathy

I've noticed that when a celebrity comes out as having MS, the response of the online community can be a little... troubling.

Initially there's support for 'one of us', a new member of our own wonky club. Plus they're shining a light on our condition. They're demystifying it for the general population. They're showing that life doesn't need to end after an MS diagnosis.

And then... we can often seem to turn on them.

Selma Blair is the most obvious recent example. She came out in a really public way with some upsetting symptoms for anyone to deal with, let alone a young woman. Poor mobility, speech problems. Hard to deal with when you're an actress, right?

I think the snark started when she was spotted using an Alinker walking bike. These are pretty expensive bits of kit, with crowdfunding being the way most people are able to source one.

Did she even have to pay for her Alinker? Is she being paid to be seen using one?

Just recently she has appeared on US TV and Instagram sharing her experience of Stem Cell Treatment. And there've been some pretty harsh comments.

Things like:
"These people have all the advantages. They can't compare their journey to ours"
And:
"They're playing the victim card. I have friends who are dealing with worse and are more inspiring"
FULL DISCLOSURE: I know where this kind of thinking comes from. I'm not judging, it's only natural.

But the thing that can be missed with reactions like this is the fact that Selma Blair is a young parent who has been blind-sided by a life-changing diagnosis.

I think we can all empathise with what she's dealing with. And I speak from my own experience that I have been willing to try anything if there's the slightest chance it can help (hello, Reiki!).

And the fact is, if money were no object, wouldn't you be willing to try anything for the sake of your health?

At the very least (and I'm hyper-aware that this might not show me in the most charitable of lights so bear with me!), I'm quite happy for Selma Blair and Jack Osbourne to be the guinea pigs for Stem Cell Treatment.

Let's face facts, as amazing as it potentially is, it's not yet a fully proven treatment.

Look at what happened to Caroline Wyatt. The BBC journalist paid to have stem cell treatment in Mexico in 2016. And following six months of feeling good she has eventually arrived pretty much back where she was in the first place. In an interview with the MS Trust earlier this year, she said:

"I do know people for whom it has halted progression, equally I know people who've been worse as a result and I know of one person who died."
So I'm more than happy for research to carry on. And for that research to be robust and trustworthy, we're going to need test subjects.

Any results - positive, negative or indifferent - will feed into future treatments. As if on cue, this (from the MS Society) popped up on Twitter earlier today. More please!

We're all dealing with the same beast, regardless of any financial or social advantages - so let's try not to pick fights with each other.

Or as my pithy yet degenerate friend SwissLet put it in a recent comment on this very blog, "Don't be a dick".

It's a lesson I could do with heeding myself.

7 comments:

  1. I've noticed this trend in behaviour towards other people with MS full stop, whether they happen to be a celebrity or not. I know it's only natural, but people are often so wrapped up in themselves that they react to someone experiencing the condition differently as though it was somehow a judgment on them and their choices. We're all the stars of our own movies, after all. But it's not a competition, is it? And even if it was, there are hardly any winners here. I'm generally pleased when someone turns up who is delighted with their treatment choice or they've just completed an iron man triathlon or whatever. Good for them!
    (pithy yet degenerate? I like that)

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  2. Good post. Really, if I had the coin, I would throw everything I had at this disease. Trikes, stem cell, horses, all of it. Ms. Blair is a public person, she does her thing with an audience. More power to her. I know I could not.

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    1. Thanks, Cindy - you basically said in under 50 words (yes, I counted) what I struggled to say in more than 500 (thanks, word count)!

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  3. Very well said!

    May I be so rude as to suggest that if you had a dollar (pound?) for every time someone told you not to be a dick, you'd be positively swimming in bikes and bee therapy?!

    (Sorry - I was unable to resist the urge to give you a bit o' shit, but it was typed with great affection. This a very good post indeed!)

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    1. hmmm. what's this bee therapy you speak of?

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    2. Note I DIDN'T say it was legit:

      https://www.mstrust.org.uk/a-z/bee-venom-therapy

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