faking it

It’s not news that I need to stick to routines- remember when I went to the caravan without the handbag and therefore the keys? Or when I went away without some of life’s little essentials? Long term readers may even recall that I went to work one day and left the front door wide open. All day…

I thought I was organised in Dublin. I’d made all the lists. I’d done the resting. I set the alarm to give me plenty of time in the morning. I had everything I needed- even the teeny ipod and speaker to keep me sane.

All would have been well had I just followed my normal drawing on a face routine. Why would I think that this was a good time to try something new? By starting with eyeliner, I scooted through eyeshadow, mascara and, ta dah, done! I always finish with mascara. Even, it seems, when I’ve changed the order. I forgot about the start. No foundation, no blusher. No dewy complexion or shape.

People, I chatted to patients, policy big wigs, and professionals. I sat on a panel. My face has been recorded for posterity.

RDWB patient input

With only half my make up on.

No mask to hide behind. No facade of confidence.

No pretending to look ‘together’ or ‘coherent’. Just a blotchy pale face, pores and the Rudolph spot exposed to the world.

I would have freaked out if I’d known. There would have been panic and tears and all sorts of anxiety at being so exposed.

Happily, I didn’t realise until bedtime. Not paying attention to the mirror has unexpected advantages.



A week on, I’m still fascinated by this. I didn’t need to have make up on to feel respectable and as if my voice needed heard; I just needed to think I had make up on. I would never in a fit, have done it deliberately, but it happened and the world didn’t end. Nobody laughed at my pores or dismissed me because I was blotchy. People were interested in my experience, in what I had to say, not in my half drawn on face. I don’t need the fake face to feel confident and valued.

Even so, I’ll not change that routine again.

the grand day out

We were early. We had jobs to do.

rdwb venue

Luckily, those included drinking coffee and consuming yummy pastries. Yes, there was influencing, relationship building, and all manner of worthy stuff; that is both fuelled and eased by coffee and pastry.

NI Minister of Health, Edwin Poots
NI Minister of Health, Edwin Poots

The Ministers (Northern Ireland and the Republic of Ireland) spoke positively.

Ditzy D and Treasurer, organising
Ditzy D and Treasurer, organising

The session chairs kept to time.

Auntie Sadie, schmoosing
Auntie Sadie, schmoosing

More work will happen as a result of the day.

Chairperson, making  'An Announcement'
Chairperson, making ‘An Announcement’
that one with the glasses may be pretending to listen...
that blonde one with the glasses may be pretending to listen…

A good result in anyone’s book.

Planning for the 2014 event is already underway.

all photographs courtesy of ipposi

turn up the volume!

A marble rotunda, some dodgy mikes, and, at about 24.30 mins through the ‘discussion session’, me…

Click for video

(You can see the rest of the presentations as well, if you’re really keen)

Oddly, my children are hugely underwhelmed by my “Oh, oh, oh, come and see me. Talking. I’m on the internet.” Their reaction has been a polite version of “and what?”. Pah! Pesky kids and their whole wide world views…

the day before

We didn’t even make it to the hotel without some minor crises: Ditzy D spilled coffee all over herself before we got on the train, Treasurer nearly lost a leg when the taxi pulled off as she was getting in, and Chairperson was so heavily laden with posters, leaflets and tshirts that we feared she may drop some of the sparkly stuff.

Probably because Chairperson and I had been supremely annoying in the build up to the conference, our offers of help for the afternoon set up were politely declined. This provided an excellent opportunity for window shopping or a pre party bath and snooze. (I’d hoped for the former, but enjoyed the latter.)

We had our charity first birthday party- cake, sparkles and giggling- a happy half hour of silliness before we went downstairs for grown up mingling.




Downstairs, it felt a bit like being at a family wedding- I knew some people but wanted to get to know the others; we have the same issues and concerns and will maybe know each other for years after this.

I met Jamie, featured in this video, who lives with Ehlers- Danlos Syndrome. The film is informative, but I learned much more about him, his world, and the impact of his condition, as we blathered in the bar for a bit.


Doesn’t the valuable stuff often happen round the edges? Away from the pomp and formality, where we’re relaxed and informal.

Luckily, unlike some weddings, nobody lost the run of themselves and all went to bed at a reasonable hour.

We volunteers are professional after all.