Does anyone really want to hear about someone else's illness? Having been sick for two years now, I can actually time to the second concerned platitudes about my health transform to the glassy-eyed, ‘Oh God when will this end’ expression and it's usually at about this point…'I have a rare condition called Idio-’

And there it is. The dazed nodding when I can tell nothing is going in and that they very much want the conversation to move along. Quite simply if you have a rare disease – defined as an illness that affects 1 in 2000 – you’re going to struggle to get people to engage because it has likely not ever touched them or their lives, there’s no common ground to share the experience. It’s no one’s fault, even my GP had to get me to spell my illness down the phone so he could Google it during our first consultation.

But tomorrow is World Rare Disease Day and since I refuse to ‘show my stripes for rare diseases’ (wearing stripes is the traditional awareness raising strategy) or wear a funny T-shirt that says, ‘Auto-immune disease: Because the only thing tough enough to kick my ass is myself’, I’m writing this.

I've written a lot over the last few years about the consequences of chronic illness. I’ve detailed how insensitive people can be and how knowing I might have a limited lifespan spurred me on to embrace new, if not always wise, adventures, (yes, I’m referring to........

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