This is me. I like like poetry, writing it, reading it, hearing Robert Burns read in Gaelic style. I’m not going to tell you my age , if you know me well enough to have read my blog, or just know me well enough, then you know how old I am. I have black hair, and green eyes.
So here in this picture you might make all kinds of assumptions. She looks young , vibrant and healthy. She looks like she enjoys spending lots of time outdoors, and is fairly active. She looks good. But here are some more pictures of me.
This is what I look like too. I have systemic lupus erethemetous. I also have complete heart failure, nervous system damage, seizures. Raynaud’s phenomenon ( a circulatory problem that causes your extremities to turn blue, purple or even black with cold) , Sjogren’s ( an auto immune condition that causes extreme dryness in your joints, and other areas such as your mouth , eyes and soft tissues.) , and also POTs. Postural Orthostatic Tachycardia Syndrome a rare heart condition caused by my lupus damaging my nerves in my heart. I get adrenaline overload almost constantly from these, and so my heart rate runs a constant 125 sitting still , if I attempt to move or do any activity it will shoot up closer to the 200 bpm mark. I only have 30% function of my heart, and have such extreme allergies that just the very smell of certain things can cause me to have an extreme reaction . So WHY did I show you these? Because I want you to know what a person with lupus REALLY looks like. To know that we deal with excruciating pain on a daily basis, but still manage to look that first set of pictures. We don’t want your sympathy. We want your compassion and understanding. We want you to know that people DON’T take us seriously BECAUSE we DON’T look sick. We’re warriors every day . Our bodies are the enemy, and the weapons the doctors have given us are very limited. What we have is fatal. Yes, I said fatal. There is NO cure for lupus. It is the zombie of the disease world, eating us from the inside out. And yet, we still manage to get up, smile, walk on, love our families, and still hold joy for life, however short it is. So maybe that’s why we choose to make sure that people see us this way, and why we hear SO often that dreaded phrase, “But you don’t LOOK sick!!”