Invisible

I am both incredibly blessed and incredibly cursed with the fact that even though millions of cells inside my body have decided to try to overthrow the establishment there are no outward signs of war. There is no way to look at me and tell that it quite literally takes a village to keep me alive - a village of doctors, nurses, phlebotomists and lab technicians, pharmacists, drug manufacturers, chemists, researchers, and of course family members and friends. It is an incredible blessing because I am allowed to enter into the world on the other side without notice, I am able to keep secret all that rages inside and create an illusion of normalicy. There is an opportunity for others to see me and know me before I reveal to them the rest of my life. I can be more than the quick label of "the sick girl" or "the girl with lupus". Sometimes that illusion is a wonderful blessing because it is an escape for me, a chance to let myself completely forget this reality and submerge myself in the world beyond, in a place where life is not such a balancing act and there can be an easiness. Yet sometimes the illusion is a burden and a weight. When I am having a hard time it is difficult for others to comprehend what is going on because on the outside I appear no different. I am able to "fake it" through the day so it is hard for others to understand why I then go home and collapse into exhaustion instead of going out, running here and there, and being social. Being a good actress and unblemished by the war within makes it confusing - I can chase after my little ones all day and dance with them at circle time but I can not manage to join in with something after work? How do I explain just how much it costs me to do my job, to do what I love and to give everything I have to those little ones every day? How do I decide where the balancing point is in revelation - how much do I share so that others understand who I am and where I am coming from and how much do I keep hidden so that I can have some pretense of normalicy, some refuge from the pity that I detest? Sometimes I think it would be easier if there were something visible that let people know what I have to throw into my bag and carry along each day. Not because I want them to treat me any different, but because then maybe they would understand why I am the way I am - why some days I have lots of energy and others I am just trying to make it through, why I don't always participate in events, why it seems like I sometimes keep to myself, why I am so determined to live here and now, why I can look so good and feel so bad. And then I am thankful for the fact that in spite of everything I do look so good and it is so invisible, for the fact that I can hide it and go out into the world and live at least part of my life as if there were not those issues, for the fact that what looks so horrible written on paper looks so much better in person. A curse can be a blessing, a blessing a curse, amd both a gift when they are invisible.