Salvatore - This is really inspiring and fascinating.
The fact that being diagnosed with a serious illness is a dehumanising thing, and that people begin to see you in terms of what you've got rather than who you are, is a familiar observation in medicine. But I think you've broken new ground in identifying the way that your illness effectively belongs to a bunch of experts rather than yourself - you're the one that's 'got' it, yet you don't seem to own it - and this appropriation is reinforced by the way it's translated into a different language - the technical language of medicine, which is unfamiliar and disorienting to 'ordinary' people - and then reinforced again, in modern medicine, by the way that your data is wrapped up in proprietorial software, so that you can't get hold of it and do your own thing with it unless you happen to have quite a lot of technical knowhow.
Then on top of this, the different schools or philosophies of medicine - 'evidence-based' Western medicine, Homeopathic medicine, Chinese medicine, etc. - generally tend to be mutually exclusive, which means that normally the patient, once he or she is committed to one particular school, is effectively cut off from access to any of the other schools. So what you've done, in taking back possession of your own data, throwing it open to a much wider community and using that as a means of developing a completely personalised health plan incorporating elements from lots of different traditions, is a very rare and experimental thing.
Good for you! - Edward _______________________________________________ NetBehaviour mailing list [email protected] http://www.netbehaviour.org/mailman/listinfo/netbehaviour
