Rare bird

This week I have become slightly obsessed with a way of finding out how wonderful and fascinating and individual we all are.

It tells you how our brains tick, how our relationships work, the ways in which we cope with challenges and how all these things might help us find our purpose in life. It’s been unexpectedly illuminating.

Yes, alright, I sound like an evangelist selling spaces on a navel-gazing retreat, but this is actually something we’ve been doing at work.

And it is – dum de duuuum - personality profiling.

Essentially, it’s meant to be a practical and insightful way to help us work out where we fit in the organisation as a whole, what individual characteristics we bring to the team dynamic and how we can be trusted (or not) to work on our own.

But, to be honest, it’s become a bit of a time-noodling way of swapping results and squawking at/agreeing with/secretly disputing each other’s profiles.

To find out how special you are (and you are), use this link, answer the questions truthfully and have your personality delivered to you via email with the addition of some rather delightful illustrations.

You might be surprised. Then do your family. And your friends. It’s quite addictive.

Turns out I am an advocate personality and the profiling tells me that’s pretty rare – apparently making up less than one percent of the population.

All very interesting, but like horoscopes there’s a bit of believing the nice bits and shying away from the less positive* parts.

Whatever the science behind it, it’s caused some amusement in the office and made me feel a bit special for being rare.

It’s just that sometimes, being rare isn’t good.

Rare might mean complicated, mysterious, valuable – all potentially attractive on Tinder, but no so much in the world of MS.

The disease itself is considered relatively rare with an estimated 1 in 600 people in the UK affected. This is actually less than the chance of being born with 11 fingers or toes, a chance which interestingly stands at 1 in 500.

When I was first diagnosed, I did all the scary googling of rare forms of the disease, rare symptoms, rare progressions and latterly, as I’ve headed into the DMD arena, rare reactions to drugs.

It’s not an overly reassuring world and on the whole, one I’d far rather be common in.

Because for the moment, common means known, it means reasonably well understood with the potential of management (at least in part) through drugs or physio or equipment.

To be rare in the MS world means diagnostic confusion, minimal information and even fewer options.

It means fighting an already lonely battle entirely on your own.

In an ideal world, we’d have enough funding for the research and treatments that would make us all a bit more common.

More and more common until the difference that is our disease entirely disappears.

Things that are good rare: diamonds, steak, being able to touch your nose with your tongue

Things that are bad rare: this complete and utter horror

:: Rare bird by Glen Hansard

*they may be less positive, but they are annoyingly accurate