So I have a weird illness thing. Without going into too many gory details, my symptoms range from vision loss to tingling, or tinglage, nausea and all that, numbness and the occasional unglamorous swoon, and despite a slew of opinions from GPs, neurologists, endocrinologists and other members of the ologist ilk, I still have no diagnosis.
My condition has taken me on a research journey that has been at once shocking and perplexing. From migraines to IBS, CFS/ME to fibromyalgia, there is still such a wide range of illnesses that medical professionals struggle to understand, let alone cure; what concerns me the most, however, is the lack of awareness on the part of some doctors and other practitioners when it comes to how to advise those diagnosed, with particular reference to CFS/ME, and a comparative lack of research funding to boot.
So it's my hope that my new blog becomes a sort of platform for exploring society's current narrative around those chronic illnesses that aren’t well understood, as well as how we can make improvements. From increasing funding for research to destroying social stigma, creating better support networks to putting people at the heart of their care, there's much to be done in terms of effecting long-overdue change.
I also wanted to blog about where mental and physical health intersect, and reflect on how we as a society could better support people whose experiences we may not be able to relate to, but who are struggling nonetheless.
Then there's the bit where I try to make sense of life from a new perspective, one in which my physical health is impaired but my curiosity in and passion for stuff is still on point. There is much to be learnt from illness, and much to be seized. In this section, expect vignettes aplenty, a bit of vile sanctimony and lots of complaining.
'You can see me, I've got nice hair and that, but we've all got shit under us that wants dealt with' (some woman I overheard in a pub in North Yorkshire)
Disclaimer: because I identify as a woman, I am writing from a female perspective. Everyone's inner world is unique, but my gender and background have a lot to do with how I experience mine. For that reason, my posts won't always be representative of everyone's experience, for instance, in relation to access to healthcare, support networks, symptoms etc. I therefore invite readers to share their own experiences by getting in touch.