The problem with invisible illnesses is that all too often people have a hard time understanding how sick you may be. The problem with chronic illnesses is the toll it takes over the course of time. If it were a shorter time you could gather your strength and get on with getting healthy. At least that’s what I tell myself.
The problem with chronic invisible illnes is that you never actually look as bad as you feel. You never look like you are completely falling apart and torn and tattered to being threadbare. All of this can make it hard for friends and family members to understand just how completely overwhelming a chronic invisible illness can be for the person who has it. I know from my own experiences that I’ve had people tell me that if I simply didn’t talk about lupus or think about it as often I’d feel so much better. If only it were that simple, believe me I’d be all over it.
The problem I have with lupus, well besides how it has taken over so many things in my life, is that because I do not look as sick as I am, I tend to try to be “normal” as much as I can. Being “normal” can be forcing myself to keep up with the healthy people. It can also mean that when I feel better than I usually do, I tend to cram too many things into the small amout of time I have. And I end up paying a steep price for it. Which results in me feeling worse than before.
I understand that it can be hard for healthy people to understand that even when I’m feeling a bit better than usual, I’m still not well and can’t just jump into the full on “normal” routine I once had. So I get tired of explaining and simple carry on pretending. Because it is easier that way, it becomes routine and chronically easier as time goes by.