Dorina J. - Diagnosed at age 16

My name is Rina, and my lupus journey began when I was 16.

It was right before summer 2015, and at first, I thought I had overdone it at soccer practice. I assumed the pain was soreness. But this pain was different. It became unbearable, and I could barely move. My body felt like it was turning against me, and I could not understand how life changed. After tests, I found out I was anemic and had rheumatoid arthritis. Still, my doctor believed something bigger was happening. By my third visit, she diagnosed me with systemic lupus erythematosus, also known as SLE. Hearing that at 16 was terrifying. I did not understand lupus or how much it would take.

Since then, lupus has been a painful battle. Over time, I developed discoid lupus, Raynaud’s syndrome, psoriasis, anxiety, and depression. I am in pain 24/7. Some days I manage it, and other days basic tasks feel impossible. Lupus is not just being tired or having a bad day. It is waking up not knowing which version of your body you will get. One of the hardest parts is how alone I feel. I fight every day, even when I want to give up. Some people think I am exaggerating or make me feel like all I do is talk about lupus. But lupus affects every part of my life. I do not have many lupus friends, so I feel like I am speaking a language no one understands.

Teaching with lupus is one of the hardest parts. Middle school requires energy, patience, and emotional strength. I love my students, but some days I stand there while my body screams. Feeling unsupported at work makes it worse. When I take off for appointments, I feel scolded instead of understood. Having only 8 PTO days makes me feel trapped. Lupus does not wait for convenient timing.
I try to find support through lupus resources, but most days I feel like I am carrying this alone. Every day, I want to give up. I am tired of being strong, explaining myself, and proving my pain before people believe me.