I suspect that while those close to me understand what I am going through, those not close to me have no clue (whether I tell them or not). Telling someone of this is not necessarily a window to understanding for them. And the weirdest part, the big unscalable wall I keep constantly and consistently hitting is the part of this I can't wrap my head around and get past.
No one can see what is wrong.
This is a much more difficult thing than I anticipated. I know I'm sick. I know I have major health problems. My family, my husband and my closest friends and anyone who has had the misfortune to be on any of my calls to 9-1-1 knows I am sick. But to the rest of the world I am healthy, so what is my problem?!
Just because you can't see it, this does't mean it isn't there.
The first time I saw that sentiment was not all that long ago on Facebook. I was still working at the time I'd first seen it. I was eating lunch and took about three minutes to glance at Facebook, something I did as many employees found it easy to get in touch with me via the programme. One of my old high school friends had posted a message that described several conditions that aren't readily apparent. It did not specifically list my condition (although other subsequent posts did) but still, the sentiment is exactly the same. I understood immediately what this meant, and how completely true it was. It is.
The one and only positive thing I can say about having this condition is that it is a learning experience, one that is intense in its personal connotations and the effects it has on my life and me. It is part of me and part of who I am. That doesn't mean that I don't want to be cured of it, should such a thing be possible - who'd want to be permanently sick?! But at the same time, I would not excise it from my memory or go back in time to make it go away - I very much need my life-experiences to go on and to grow. But if some experimental palliative or cure came out tomorrow, I'd sign up for it in a moment, and never look back.
But I would never forget that looks are deceiving, and my appearance means nothing when a condition like this can so severely impact my life and yet look as though nothing is amiss to others.