Making the move from writing wonderfully escapist fiction to creating an impactful and potentially life-changing health guide was not an easy decision. It required a lot of soul-searching and vulnerability.
How to Talk So Your Doctor Will Listen started life as a battered notebook intended for my children – jauntily entitled ‘Everything I learned the hard way, so you don’t have to’. It came from the dawning realisation, after one close call too many, that I may not necessarily be around to guide them through the minefield of healthcare today, along with whatever genetic issues that may yet have inherited from me.
Becoming a ‘zebra’ – someone living with rare illnesses has been incredibly challenging over the last few decades – collecting diagnoses the way some people collect air miles. But the online community has been incredibly good to me – not least in terms of actually securing some elusive answers to long term health issues.
Finding that network of support and guidance quite literally saved my life, and made the decision to write this book that bit easier. And my health situation (an alphabet soup of autonomic, autoimmune and vascular conditions that would put Dr Seuss to the test) also challenges and inspires how I manage my work, my writing and my time.
Different people find different ways to manage their health situation – and for many years it was something I handled quietly at home, choosing to get out the ‘jazz hands’ to go out and promote my novels, and then losing weeks or even months to recover afterwards. And while I may have had some incredible once-in-a-lifetime experiences that way – winning a prestigious industry award and topping the entire Kindle and Audible charts… Although the memories are priceless, it was unfortunately my health that paid the price.
Writing books is an incredible way to make a living – you can do it in your pyjamas, on the bathroom floor and in hospital waiting rooms! And when I’m not writing, my world revolves around my two children, my two dogs and my ever-tolerant husband – probably in that order! Managing my health conditions and my daily treatments is a huge commitment and an enormous time suck.
But when I get chance, I try to turn to knitting, quilting, photography and baking to give me comfort and that elusive ‘flow state’ – so important when managing chronic pain and limited energy.
If you follow me on social media @CotswoldPenny you will already know I am on a constant quest to sew the perfect capsule wardrobe from only natural and organic fabrics due to severe MCAS. I am not allowed my own alpaca – I have asked – repeatedly… but get by instead by finding the most amazing independent producers. I also adore swimming outdoors, or plunging into my ice barrel – the bobble hat remains optional.
Before I became an author, and my health trimmed my wings, I loved to travel.
After university, a stint at the BBC opened my eyes to the world of location filming, and I set up my own business finding and managing film locations all over the world – film, television and advertising projects all giving me the perfect, legitimate excuse not only to travel, but also to peek behind the scenes – a habit I still find hard to resist and providing wonderful inspiration for the novels yet to come. It was also incredibly handy for disgraceful anecdotes and ice-breaker conversations…
Now my interest are, of course, a little closer to home and I still get a thrill from living vicariously through my children as they go out into the world as young adults. Indeed, their support and generosity was pivotal in setting up my new social media platform @how2talktoyourdoctor on Instagram and TikTok – with the both accounts going viral time and time again.
Another brave step into vulnerability – sharing the ‘warts and all’ reality of living with chronic and debilitating illness and also the hard-won lessons about how to communicate not only with your doctor, but also friends and family who may be struggling to understand.
Penny Parkes 