Andrew's blog - The Inexpert Patient
1. In defence of ignorance
‘I wouldn’t bother with the MS websites if I were you.’
That’s the one piece of advice I can remember my consultant neurologist giving me when I was diagnosed five years ago. Now, as then, I can see where he was coming from: my diagnosis was marginal, the symptoms mild and the prognosis about as good as an uncertain prognosis ever can be. His view was that the MS charities’ information was aimed at the more severe end of the spectrum. I would risk frightening myself, hanging around too long in places like this.
It was a good piece of advice too – I know because I didn’t follow it. It wasn’t long before I was on the websites, staring at dispiriting graphs about progression trends and details on symptoms I could have done without. You don’t have to read too far into an A to Z of MS before you hit bowel, continence and depression. My response was to stop there, step back and choose the path of the inexpert patient.
An approach which I don’t feel has cost me much six years on. It means I don’t know anything about the research going on that may or may not yield cures or treatments at some unspecified point in the future. It means I know little about the drugs out there now, other than the ones doctors have suggested I take. I may be missing out on trials I could be elbowing onto, vitamins I could be buying, assorted charlatanry I could be falling victim to. I have to endure the looks MS friends give me when I have to ask them what they mean when they talk about CCSVI, but this aside I don’t feel like I am missing out through my deliberate ignorance.
Because the inexpert patient takes a bet that most information will be available as and when it is needed. And when it is needed it will be available in filtered, personalised form. This can be through MS professionals (who have suggested drugs and advised on fatigue), MS networks (through which I found out about our excellent relapse clinic), friends with MS (who helped me navigate drug choices) or people outside the world of MS altogether (like the masseur who helped fix my needle-phobia). Websites broadcasting to as diverse a coalition as all people with MS struggle to deliver information in this way. Until they can, these websites might, for some people, remain something worth avoiding.
The truth remains that for even the most expert patient the really salient information remains cussedly out of reach. The knowledge that there is a cure (there isn’t). And in the absence of a cure, some information about how long we’ve got before things get bad (they can’t tell you). No amount of factsheets and websites can make up for that gap. For the inexpert patient, the rest is just noise.