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3 ways to tell your story

16 October 2016

One thing about having a chronic, debilitating and diagnosed ‘incurable’ illness is having to find ways to tell the same story to people over and over.

You get asked what’s up, or down, and it’s hard to know what to say on the hop.

  • Do I tell him the truth?
  • Will it worry them?
  • Will she think I’m going to fall over right now?
  • Am I being too pessimistic about the future?
  • How do I still get to the Post Office before it closes?

It’s actually a skill you develop with practice. People who see you or find out what’s going down in your life want to show they care. And I genuinely appreciate the love and concern. But it’s true to say it’s not always easy to explain your condition when it’s hard to even understand yourself.

One day you’re motoring along sharp as a tack; the next, you’re chilling on the couch with a spasm in the foot and a pressing chest pain that’s nudging the 6-hour mark.

My answer is to prepare for the experience. And when I say prepare, I mean literally have ‘template’ replies that work a treat.

They even come in themes and are deftly edited for the specific time, place and target audience.

In all, I now have 3 ways I tell my story. As a freebie to fellow MS peeps, here's my how-to:

  1. The 10-second version that’s basically ‘Nothing to see here’,
  2. a 30-second one: ‘Not sure if I’m going to bore you’,
  3. and the 3-minute ‘I can see you’re worried about me’ version

The 10-second ‘nothing to see here’ version

This is my most-often used version to explain why I am hobbling along with a stick at the end of the day, or just looking a bit ‘less than sharp’.

It goes like this: 

Someone sees me fatigued or limping a little in the afternoon: ‘What’s wrong Paul? Hurt your foot?’

My reply, with a little smile as I keep moving: ‘Oh, I’m fine. Just a bit wonky.’

The up side to the 10-second headline reply is it generally works. The person you pass by is happy enough, and opens the door as you pass by. Cool.

The down side? An intelligent questioner knows you’re fobbing them off, not very successfully. They see right through your little 10-second fake, and will probably come back later for more detail.

All in all, not a bad option when you’re rushing to catch a tram or are unsure if the person actually wants to hear what’s going on.

The 30-second ‘not sure if I’m going to bore you’ headline

This is the story I pull out when it’s clear I can’t just escape with a ‘feeling a bit wonky’ fob-off.

While still holding the door handle of the room you’re entering, go straight to the headline: ‘Yeah, I’ve actually been diagnosed with MS, multiple sclerosis’.

At this point, they’ll either give you a blank look like they think you’ve contracted a virus that you’ll bounce back from OR they’ll look terrified and wonder if it’s a death sentence.

Pull out the old—‘long story, short’—intro for the next bit and bring it home with a very basic ‘time and date’ of diagnosis script.

A thumbs up doesn't hurt either. 

They’ll be grateful you didn’t fob them off, and you’ll still get to the meeting on time.

Something to keep in mind: They may want more, and that’s because they love you and feel genuinely concerned for you.

Family and friends want to be a part of your life. And talking about what's happening to you doesn't necessarily bore them, or make you a whinger. 

The 3-minute ‘I can see you’re worried about me’ version

This is the one you pull out when someone has got that worried look on his/her face, and have probably heard a rumour that ‘Paul’s not looking so crash hot these days’.

This is the story that’s especially helpful to alleviate any thoughts you’ve only got three weeks left to live.

The content is simple:

  1. INTRO: Start by saying the truth—‘Yeah, actually… (pause) I’ve um got MS, multiple sclerosis…’
  2. WATCH OUT: Take note of any reassuring hand reaching for your shoulder or tear in the eye and respond with ‘Oh look I’ll be right and I’m getting good support’
  3. BE PREPARED: Be wary of the occasional reply that says ‘Oh no. That’s terrible. My sister had that and she’s in a bad way.’ (The template reply to that is… ‘Well, we’re all different—‘)
  4. GIVE THEM SOME DETAIL: Briefly retell the date you were diagnosed
  5. GIVE THEM HOPE: Tell them you’re going well with a good doc, great nurse, and now a veteran when it comes to intravenous drugs
  6. STOP AT 3 MINUTES: Make sure you keep an eye on the time and finish at any point with ‘Well, long story short, it’s all good.’

Footnote: There's one thing you should do with all three versions and that's to listen and remember what people say in reply. A look of compassion, a thoughtful hug, or a request for use of your disabled parking permit are all possibilities. 

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