what's in a name?

Blah blah blah, it's been a while. Super busy, yaddah yaddah. 

I've always been a little uncomfortable with calling myself an advocate. A couple of years ago I went to a seminar about independence and MS treatment. I remember that I couldn't bring myself to refer to the stuff I do as "advocacy."  Instead, I just called it "Moaning on the Internet."

But I'm uncomfortable with the A-word because I really do think I only moan about stuff online. It's what Ada Lovelace / Alan Turing / Tim Berners-Lee / Tron would want. And I do recognise that some people really are great advocates. I have nothing but respect for them.

I suppose I've always been a little uncomfortable about making my MS the centre of my life. Just after losing my job I had an interview for a job with one of the UK's major MS charities (c'mon, there're only two - three or four at a stretch). While I was disappointed to be unsuccessful at the time, I can't think of anything worse than working full time on your own health condition. 

As an aside, I was talking to a friend for the first time in ages recently. I was talking about my podcast work and he asked, "Are they all about MS?"

Anyway, I think currently that I'm basically living next door (or at the very least adjacent) to MS. 

And it's super-dull and doesn't make for exciting blog posts. Not when I'm picking up disabilities imperceptibly, like coastal erosion. It all seems normal until you eventually turn around and realise that your living room is in the fucking sea. 

Picture of the author yesterday.
"I'm sure I used to get up these stairs quicker"

Lockdown has multiplied my pre-existing antisocial nature so that hasn't helped. And neither has the fact that I haven't been swimming for over a year. I can't believe how much I miss it. 

Anyway, back to advocacy.

The other week I clocked the fact that somebody' on Instagram referred to themselves as a MS Influencer. 

I mean, if they're joking that is some next-level darkly cynical shit. 

But if they're not joking.... On what planet is that the right word?

EDIT

Almost immediately after I published this, I got a message on Twitter from the one and only Jackie Z aka The Queen of GSD:

It's definitely a real word. I have complicated feelings about it but it's usually one used when someone is actually getting paid for their info and experience. It's not the right word but capitalism doesn't know how to pay people in our space without giving them a title that they use for other people who we expect to get paid. AND if we expect to get paid for our experience there has to be value in it for the company and they've deemed "influence" to be the reason worthy of payment

 Thanks for clearing that up, Jackie!

And to be perfectly honest, I've been paid for sharing my experiences in the past - at the seminar I mentioned above, for writing articles for MultipleSclerosis.net. So I don't have a problem with that. At all.

But that word, as Jackie said, isn't quite the right one.