It feels a little strange. It’s #rarediseaseday2015 and I’m at home, in pyjamas, not rushing about in a panic. I’m burbling on social media, avoiding writing a speech, but generally having a normal-ish day. It’s very odd.

For various reasons, our annual event is being held on Tuesday- the anxiety and chaos are simply delayed by a few days.

One of the top hotels on the island made our charity an offer of a splendid venue. We were delighted to accept, but the location presents its own risks in terms of turn out. We wanted to move away from the city, to bring academics, doctors and researchers close to patients, rather than making patients travel huge distances, again. To facilitate participation from folk who may not normally have the opportunity. But many healthcare professionals and managers have city based clinics, or aren’t allowed to travel outside their normal area, and may patients and families are, well, unwell. We can only try.

Ditsy and I are travelling together. The long term reader will recognise the signs of impending trouble. Goodness knows what tales there will be to tell, but there will be giggling and faffing and squabbling. The fancy hotel will not know what’s hit it.

We’ll turn up with a car full of posters and banners and popups and blu tack. I need to investigate bags of random stuff around the house to see if they contain conference essentials. We assume there will be emergency shopping. With any luck, I’ll remember to get my dress out of the dry cleaners.

I must write that speech.

It’s rare disease day, and my dress doesn’t matter.





telling tales: #invisibleME

As always, I need to manage my time and my health better. I’m busy or asleep- but it’s nearly rare disease day, so we should know to expect no better. I’m less concerned with conference detail this year- that may come back to bite me- but I’m doing assorted on line courses and preparing presentations for several events, so my brain is full.

I rarely do anything in the evenings. I flop in a heap beside the fire and snuggle little people or a little dog. Sometimes I read, mostly I watch TV. (What will I do now that Wolf Hall has finished?)

But Monday’s event was important, and local. I’m on the steering group for the project of which this was part- I didn’t want to miss it. It was an opportunity to chat to politicians, patients and policy makers about ME & fibromyalgia. All I had to do was blather to the folk I was sitting beside. They’d come to learn and I tried to help. Patients and carers told their stories, very powerfully. The emotion was clear. Invisible conditions, invisible people. It was moving and exhausting.

Health Minister & organisers
Health Minister & organisers


One man was overwhelmed and unable to participate. His wife tapped me on the shoulder.

I read his story to the audience. A story of many years, much expense, and little change. A story of worrying that his wife was dead in the bed. A story of staggering disbelief and arrogance from health professionals. A story of a family of warriors. It was an honour to share that. It needed to be heard, to be listened to and to be valued.

I tell the story of my mum at the start of every presentation. It’s why I do what I do. I’m looking forward to all the stories I will hear at our event next week.

Marie reminds us why it’s not just important to hear stories. It’s important to tell stories. It’s part of who we are, and how we heal. How we stop ourselves from staying invisible.


changing the story

As is the way of these things, my little people are getting bigger. Early each year I’m puzzled by changed age groups in sports and dancing. How can Girl1 be ‘Under14′ and Girl2 be ‘Under13’?

Under14 dancing has different requirements- and I don’t just mean the jig set dance (nope, me neither). I mean the make up. Girl1 went dancing on Saturday before a competition, except there was no dancing. There was a beauty parlour in the back room, with Girl1 and her mate as the subjects. The bigger girls wheeled out make up bags and curling tongs and set to work. Great fun was had, with the dance teacher occasionally popping her head round the door and demanding more blusher. The girls looked great, wondered if their eyebrows had been coloured in because they felt weird, and danced just as well as they normally do.

Have you spotted the problem yet? This level of attention to appearance is now a requirement. I’m going to have to help do it. Me, in charge of somebody else’s make up and fancy hair do. A whole new story opens up.

irish dancer

Our stories change over time. I used to talk about education and employment for ex prisoners, then I could do nothing, not even talk about doing nothing apart from lying on the sofa. ME took much from me.

Eventually I started to tell my mother’s story, as the one thing I could do about her illness, and I realised that my themes of isolation, loss, grief,  families as experts in rare disease, bewilderment & lack of support were common to many other stories. Like herself, her story was unique, but the issues it illustrated were common to many.

Unfortunately, they still are, and I’m still telling stories to try and change that.

Why stories and not graphs and stats and charts and plans? For the same reasons I rarely use text in presentations: I’m the different voice in the room; why would I want to look the same? If I get the chance to talk to health service managers, it’s because I have something different to say. An alternative viewpoint merits alternative presentation- one that looks like ‘me’ rather than ‘how the system works’. (Also, I don’t have graphs or charts or plans.)

So, imagine my delight when I discovered that ‘how the system works’ doesn’t work anyway.

What the leader cares about (and typically bases at least 80% of his or her message to others on) does not tap into roughly 80% of the workforce’s primary motivators for putting extra energy into the change programme.”

Scott Keller and Carolyn Aiken (2009)

The Inconvenient Truth about Change Management*

Me and my story will potter on, sometimes talking about my mum and rare disease, sometimes talking about ME, sometimes talking about transformed relationships- always talking about valuing of the patient experience and time.

“Health statistics represent people with the tears wiped off”

Austin Bradford Hill

I talk about the people and the tears.

stylish girls
stylish girls

How do you tell your story?

What difference does it make?



* from Module 2 Building Alliances for Change, School for Health & Care Radicals 2015 #SHCR

observations and learning from this week

One is never too old to be laid flat by the common cold.

Rubbish things happen to those we know and love.

Homework works well when it’s teamwork.

The TV recording box knows exactly the programme you’re most looking forward to watching, and fails to record it.

I may be addicted to Wolf Hall
I may be addicted to Wolf Hall


Just because I put things in the diary doesn’t mean I recognise that I have to turn up in that place at that time.

There are too many dancing competitions (6 days in 3 weeks- guess what fool signed up for that? See point above.)

Our little blind bundle looks cute under the table, but if I move the chairs, he has no idea how to get out.

The magic conference elves are at it again.

I’m becoming a healthcare geek- I was all excited to see that this week’s study guide is available.

Most amazing of all- it is possible to 3D print food. Food, people. That really seems like wizardry. One possible application is that pureed food can be somehow constructed to look like its pre-pureed state via a printer. It could look tasty and appetising rather than, well, brown gloop. How incredible is that? (With luck, it is also edible.)