The geeks guide to ME/CFSExplaining ME/CFS to ‘normal’ people is difficult because there is no frame of reference, you can try the usual
- ‘imagine you have a hangover combined with flu’
- ‘imagine you just got run over but had no visible injuries and were expected to just pick yourself up and push through it’
How many people get drunk enough to have a hangover if they are already suffering from the flu? and who really knows what it’s like to be run over unless it has actually happened to them? Normal people will never understand unless they get it themselves.
A geek on the other hand will instantly understand if you tell them that the human body is a laptop and when it gets ME/CFS that it may have contracted an invisible worm or virus that has changed a couple of registry keys and moved a few system files.
Now things don’t work the way they once did, programs crash for no apparent reason, it runs hotter when there’s no program on the go and everything is just so much slower and harder than it was before – it looks fine, all the virus and adware scans have come up empty but you know there is something wrong.
Even the battery fails to charge, it only ever makes it to around 10%. Changing the cable or the way you use it has no affect on the constantly annoying pop up saying ‘please switch to mains’ – some days it doesn't even start up at all even though the power light blinks at you to show there is life in there somewhere.
...But the casing still looks brand new and you’d never know there was a problem if you hadn't used it previously – you’d just think it was a crap laptop.
So how do we fix this? Sadly we don’t.
Humans don’t get a re-boot or a re-install, we can’t save our memory to a backup system and when things start breaking down completely we can’t mend it with a new one (well, mostly) We are stuck with this computer for life; We can uninstall a few social apps and conserve energy by shutting down the least essential processes, but basically that’s it.
Sucks to be ME huh?