There is no handbook that you are given when you get a diagnosis of a chronic illness. None. You might wish there was, but I promise you a doctor doesn’t have one to give you. Sure, a doctor may hand you pamphlets and such, but it isn’t a handbook.
There is no Welcome to…. or Living With…. I mean those titles might exist, but they aren’t handbooks offered by medical practitioners. And maybe, just maybe that’s a good thing. Not because lack of knowledge is a good thing, but because for some people that first diagnosis can be overwhelming. And for some of us, when we are overwhelmed we can barely remember our names, let alone remember to grab everything with us etc.
When it comes to an illness like lupus, the reality is that there is no set formula or path that the illness takes. How it affects one person is not how it will affect another. And if I were given a book that basically spelled out how the illness should behave and then it doesn’t behave that way, I’d probably be mad. And I’d wonder if I really had lupus or if it was something else that had been misdiagnosed.
Or what if your illness starts doing things that aren’t in your hand book? Then what happens? So no my dear friends, there aren’t handbooks for this, but there are books in general about the illness. And wonderful support groups.