I can’t tell you how many times this week I’ve sat down with the WordPress app open in front of me, and yet I haven’t completed even one of the posts I’ve started. So many thoughts; not enough time, or energy, or concentration.
This will be very short, which (I hope) will mean that it gets published, rather than just festering in my ever-growing pile of drafts.
While reading a report from the Royal College of GPs (here) one sentence leapt out of the page because it describes so accurately the way that I want to be seen:
Finally, the work has clarified the strong desire among many of those who live with progressive medical conditions to be viewed by their healthcare teams as ‘individuals-in-community’, rather than as ‘patients’; active members of social systems to which they make a rich contribution, and which help to sustain them, rather than simply passive recipients of care.
The entire report, Communication and Continuity in Progressive, Life-Likiting Illness, is well-written and thoughtful. It provided a great deal of insight, and has left me with a few points to ponder, and some practical things to do, in order to improve the continuity of my care (not easy with 24 different specialists at 15 different hospitals). I often feel as though my ‘self’ has been buried under layers and layers of medical complexity, so I’m grateful for the validation that I can still be seen as a real person, not just a body carrying an intriguing and rare syndrome.
Also worth reading is a book called ‘How Doctors Think’ by Jerome Groopman, which explains (in a very approachable and accessible way) how doctors handle the information given to them, and how this leads to various decisions. I found it fascinating and challenging.
There are other things I could recommend for you to read, but I’m falling asleep. I’ve dropped my phone (on which I’m typing this) about 8 times, and have completely lost count of the number of times I’ve had to delete streams of gibberish, from my fingers trailing dreamily across the keyboard. You’ll have to wait until next time…
While you’re waiting, I’m always happy to receive suggestions of interesting things to read…