Hello, my darlings! Another wild week is nearly over and I get to pop into your email, thank you.
A small thing I’m asking on Twitter and elsewhere - I’d be delighted if you could vote:
I wanted to discuss why we share our diagnosis stories and the urge to gobble up all the information we can about our illness.
You, my dearest readers, know I had no intention of telling my Parkinson’s story. I wanted to write about thrilling adventures not whether I can walk straight - but here we are. There is an almost irresistible pull to expressing ourselves when a life-changing event tilts our world.
I suppose the question is does sharing add value? That’s highly subjective. My ranty, humourous and wine-fuelled approach might not be for everyone. In the same way, I don’t get a huge amount from a very science-driven style of sharing. And that’s ok.
We, especially when newly diagnosed, should have the chance to feel our way through this new world order. I don’t like the idea that just because you have experienced something for a long time only you have the authority to express opinion.
Now, of course, there is a frustration when you have been on this ride for a while, that things aren’t changing. Lessons, as they say, don’t appear to be being learned. The same things are repeated. Hell, I revisit themes in this letter regularly and I’m the first to admit it’s a bore. For a progressive disease, it certainly doesn’t feel like there is any progress. On a cure, on improved medication, on day-to-day care, on financial provision, on public perception, on access, on…bloody well anything!
However, I believe that a) we have the right to express what the hell we want, even in an over-saturated field. And b) everyone’s take has a nuisance and subtlety that generates a different perspective.
Is it our collective responsibility to change the state of things? I don’t know. I don’t write this for change, I write it for connection and a sense of togetherness. But you might be a more active advocate! It’s all good.
The biggest joy of sharing has been all the wonderful people I have met. And who knows, as we all travel this road together maybe we will make a difference. Maybe we are making a difference. Perhaps being on the inside it is hard to measure the impact of our shared stories but it can help to believe it has a positive flavour to it!
P.S. Finally I have updated Tumbled. Pop over if you haven’t already.
P.P.S. The Sun Deck is available here…with printable posters as well!
teary eyed reading and appreciating the sharing, sitting next to my son who has the same struggle
Me too Emma. I'm writing and reading for connection. I love hearing peoples personal stories, it makes me feel less alone.