Your Make-up looks so good for “being sick”

I have heard it all from family, co-workers. “You don’t look sick.” “If your so sick, how do you do so much?” ” For being sick your make-up looks great” The one that hurt the most, “You let Lupus define you.” At the time that was said, I was helping with Lupus walks.
I received a call at 16, my Aunt was brutally murdered and I didn’t handle it very well. The stress caused a horrible, painful rash on my face, chest, arms and legs. When I stood up my legs turned purple. My health was never the same. I suffered miscarriages, chronic bronchitis, pneumonia and severe fatigue. I was blessed with a Son in 1989 and I never felt so healthy. I was able to work until 1992 when my Grandma passed away, her loss was huge for me! Suddenly I started with the rash after 2 yrs free. I was spending my time going from Dr. to Dr., at this point I just wanted to understand what was wrong with me. Some would say “Its all in your head,” I really thought I was losing it. In 1995 I was blessed with another son and this pregnancy was very hard for me. When the baby was born it through me in the worse flare I had ever had. My body hurt! I couldn’t stay awake and the rash was back. Finally, I had a positive ANA for Systemic Lupus and was told it could kill me. I remember that day, the weather was cold, the room was dark and cold. My life was forever changed and some of my family didn’t believe it was true which made it that much harder. I’m 48 now, forced to stop working in 2005 yet I didn’t give up until 2 years ago, I was putting my life in danger. I now have Systemic Lupus, Raynaud’s, Polymyositis, rheumatoid arthritis eating my spine, hips and pelvic bone with 5 bulging disc and narrowing nerves and I go through spells where I can only crawl on the floor or not at all. I have had pericarditis caused from lupus, autoimmune induced hepatitis two times. I have Fibromyalgia and chronic pain. My illness has stolen my life to a point yet I refuse to give up and if that makes people mad or think I’m not sick.. I can’t feed into that stress. You want to know who I am? I’m not the illness’. I’m strong, loving, funny, smart and love reading, writing and crafting, when I can sit up. You will always see a smile on my face, even if it is to hide the shame I feel for being sick and needing a nurse three days a week at 48. I have two beautiful young men who are my life! Yes, at times I start to hate my life of chronic pain and a breakfast of a fist full of meds that save me and other meds to take to help the side affects of the ones that are saving me. Please don’t look at Us as weak, helpless or lazy! We are far from it! I’m stronger because of the health issues. In 2015 I almost past away from pericarditis. when you have to deal with your mortality so many times you will figure out very fast! What is important in your life? Who is important in your life? Your able to let go of the judgement , the material things don’t matter. You just want your family, friends and most of all, TIME! I catch myself praying to be here long enough to see both my Boy’s happily married with kids and a great life. I don’t let my health define who I am because I support fellow suffers, fight for a cure, walk for a cure or sign up for medical trials. I’m trying to survive and be there to help make someone I may not even know, have just one good day knowing they are supported and understood. When did our world become such that if you don’t look dead sick you must be faking? We need a cure not judgement. We need to work together! Not key someone’s car parked in a handicap spot because they don’t look sick enough to you. Okay, I have to stop or I could write forever. There is just so much about Autoimmune Diseases we don’t understand and people suffer horribly in silence, often isolated and never ask or get help.