This reflective research blog begins with the immortal words of Joni Mitchell, which have also inspired its title:
I’ve looked at life from both sides now
From win and lose, and still somehow
It’s life’s illusions I recall
I really don’t know life at all.
In September 2008 I caught a ‘flu-like virus and became very unwell very suddenly. My diagnosis was ME/CFS. I endured two extended periods of severe illness; most of my teenage years and my very early twenties were filled with formative experiences entirely different from my peers. In February 2016, following another ‘flu-like virus, my health returned. The onset of my illness, and my apparent recovery, were equally as sudden, equally as unexpected.
In September 2019, I started a PhD looking at experiences of illnesses which – like ME – are chronic, complex and contested: these are illnesses that cause severe physical symptoms, but which medical science does not yet understand. I’ve explored this topic from both sides – from patient and researcher – mixing the personal and the professional, the experiential with the theoretical.
And yet, in looking at this topic from both sides, I realise more and more that – like Joni – I really don’t know it at all. It may seem strange to go into a PhD accepting that you will never truly know this topic – that your own knowledge will always be incomplete. I’ve seen the harm that has been caused by the inability to tolerate what is unknown, unexplained, and uncertain; my PhD will not be the latest in a long series of attempts to explain what is currently deemed ‘medically unexplained’.
I write this reflective research blog to share my research with you, and to start a conversation – so that we might, together, view this topic from multiple sides and perspectives.