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Where Emma thinks about value.
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!