I have been told, as of late, by several different people that I am brave for posting pictures of myself with all the sores all over my body during this last flare. I have posted them on my blog, on my face book. They aren’t pretty but they are reality. Lupus is a real illness, it is deadly, it is scary and it is very unknown. People need to become aware of what it is, how it affects people, how it can change someones life, family and reality. And it has changed mine.
I don’t feel sexy or beautiful for my husband very often. I don’t feel pretty, or attractive. I tell myself that my “inner beauty” is enough to carry me through. But we all know that when push comes to shove every man wants a woman who is attractive even if it is for one night here or there to make him feel “like a man”. That’s how men are and that’s the reality of life. And I fear that every day of my life. I live that every day of my life. Look at the pictures…it’s reality. But that’s not my only fear.
When I go to the grocery store with sores on my face like that (which I don’t do often but sometimes it is a necessity) people stare. I get the “Oh look she is a meth user” looks, the “oh she must have an STD” looks. The other day I even saw a mom swat her little kid for staring at me. It’s humiliating and a little sad. But again, it is reality.
I walk into our shop, which i don’t do often because I really have been too sick to go anywhere, and my husbands customers come in and I know he doesn’t know what to say or how to introduce me….”this is my wife she is ummm….well she has umm…she is sick…she is…well….” Awkward! I get pity looks from my family. I have to pretend to my kids that all is well, when inside I am wondering how bad the scars will be this time. I know that it is often even hard for people to eat when I am around…not appetizing at all.
I’m not brave. I’m just real. I’m living in a world surrounded by hurting people. People looking for love and acceptance and grace. And I am just another one of those people. Everyday i pray for strength to make it through…one more minute, one more hour, one more day! Night time is my escape. But even then I dream of being sick, I dream of being alone, having to deal on my own with this disease with no one to love me or help me, of my husband moving on to personality along with beauty instead of just settling for personality. My kids growing up and moving on with their own lives…lonliness and not knowing what lies ahead. It’s not bravery. It’s standing up to be counted with all those other women with this illness who need to be counted! We are not alone! Every day, every minute, every second of grace is one second closer toa cure!