‘Lupus has given me the most self-confidence I’ve ever had.’

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“I have decided to share my new journey with Lupus and how it has given me the most self-confidence I’ve ever had. My symptoms emerged out of nowhere. My first signs of chronic illness were the blood clots on my hands and feet mainly towards the tips (Osler Nodes.) Although they seemed so small and harmless (how they started first) they shortly become extremely painful to the touch, often making it so painful just to do simple tasks like picking up an item, buttoning pants, or turning a door knob. I would wake up early in the morning with excruciating wrist pain, often so bad I couldn’t even lift myself out of bed. The pain then started moving to other areas like my shoulder, ankles, elbows, and fingers. I would often find myself taking way more than normal mid-day naps. I would constantly feel tired, even after a full 5- 8 hour ‘nap.’ The fatigue became so bad there were days I just completely could not leave bed, no matter how hard I tried. Maybe within a short month span I started experiencing a lot of inflammation in my hands, feet, knees, and fingers. Often so swollen that it was painful just to the touch. The inflammation came hand and hand with the excruciating joint pain. Although I am 23 and look healthy, my joints make me feel like an 80-year-old lady struggling with rheumatoid arthritis (another one of my conditions due to SLE.)

My rash, often called a ‘butterfly rash’ for the shape that spreads from the cheek bone across the nose and to the opposite side of the cheek, came months after most of my symptoms had emerged.

What is SLE? You may ask. Systematic Lupus Erythematosus is a widespread and chronic lifelong autoimmune disease that for unknown reasons causes the immune system to attack the body’s own tissue and organs including joints, kidneys, heart, lungs, brain, blood, or skin. The immune systems normal function works as a protector against viruses, bacteria, and other foreign materials that may invade the body. In an autoimmune disease like lupus, the immune system loses its ability to fight back! Confusing the difference between the foreign substances and its own cells and tissue. The immune system then produces antibodies directed against itself.

When I received my diagnosis, I was not upset or angry. I began to look at it as a new challenge I was set to overcome. I told myself I would use this disease to my advantage. To show myself that I am a FIGHTER and can overcome any obstacle that may be thrown at me. Over time I found myself becoming a bit insecure about my scars. But one day I sat in the mirror crying and looking at older pictures of myself. I told myself, Lupus may have changed my face but it WON’T change my confidence. I will embrace my scars because they are now part of who I am. I love myself and forever will. Lupus has taught me that feeling 75% is actually my new 100%. And although that may sound bad it gives me motivation to get up and fight every morning!

I’m sharing this story to bring light into this silent illness with no cure, to let the world know we are here, we are fighting every day, and we will continue to fight until we find a cure. There is no limit to what we can exceed with love and confidence. Lupus will not take over my life. I’m the only one who has the power to choose what controls me and Lupus will not be one thing that does.”

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