Tell me to stay positive???

It's difficult to be an interesting person when you are lying immobile in bed, limbs limp like you are a marionette whose strings have been cut, mouth agape, eyes closed, unable to think, for 10-20 hours per day. To be interesting, you need to first be animate.

I know that it's a universal psychological reaction to try to find redeeming qualities in one's suffering, but I honestly can't think of any unique for this disease. Terrible things can happen to people for no reason, and that's how the world works. The only lesson is one which victims of myriad tragedies across the world can profess: that the world might not be fair and compassionate, but that it is our charge to make it so. However, you don't need to suffer from something so extreme, ostracizing and often permanent as CFS to be taught this lesson, and CFS patients are in no position to use the personal lessons that they have learned for broader social change because, you know..... sick with CFS.

If anything, I'd say that while this might have made you a better (albeit disabled) person, the real reason to stay positive is that this is the only life that you get, and you get to decide how you live it. It's entirely possible that in the next few years medical advances could ameliorate your condition or, possibly, find a way to cure people in your particular subgroup. The wheel of medicine is turning in the right direction on this disease, although it's turning in the slowed years of medical time. Don't you want to see if, over the few years, it might revolve just so, find just the right new compound or antiviral, to give you back all of the life, happiness, and abilities that you have lost?

You shouldn't stay positive because an act of God struck you down and made you an interesting invalid. You should stay positive because this is the only life that you've got, and despite all that you've lost there is still one thing that can and should always guide you, which you can always honestly live in and also realistically live for: hope.

/r/cfs Thread