That time I … was diagnosed with Lupus

Blackboard with text Lupus, book, pills and stethoscope on blue wooden background.

Getty Images

Blackboard with text “Lupus”, book, pills and stethoscope on blue wooden background.

By Janyce-Monique Johnson

I was 14 when I first had symptoms. According to the Lupus Foundation of America, symptoms of Lupus develop in mostly women of ages 15-44.

Symptoms began in 2013 when I was in the 8th grade. I had a presentation in English class, and I was nervous. When the teacher called my name, I stood up, and as I made my way to the front of the class, I suddenly stiffened up. I simply could not move no matter how hard I tried. I couldn’t move my hands, my legs, my face and I stayed stuck, unable to escape this temporary state of paralysis. 

Finally, after 20-30 seconds, I was mobile again. I looked around and saw the faces of my teacher and my classmates, all with expressed concern.

I convinced my mom to take me to the doctor, whose only advice was to “eat more vitamins.” But the vitamins did not stop the symptoms from occurring. I tried to control it the best I could. After five years, I took myself to see a rheumatologist. She took blood samples from me and ran several tests to discover why I kept having joint pains. Two months later, I returned to the rheumatologist, who told me I have Systemic Lupus Erythematosus. 

After my diagnosis, I had a lot of roaming thoughts about this illness I had never heard of. So, I decided to do some research. I found out that Lupus is an autoimmune disease, and in my case, my antibodies are attacking the connective tissue in my joints, causing me to have joint pains and stiffness. I also found out that the origin of Lupus is still in research, and there is currently no cure. 

Since my diagnosis, I’ve had many moments where I felt helpless, hopeless, and alone being the only person I personally know diagnosed with this autoimmune disease. But I found my hope: writing, helping others, and fun experiences. Writing helps me express my struggles in a way that helps the world understand Lupus and myself better.I know having Lupus will complicate my life forever, but I choose to transform this negative aspect of my being and drown it in positive opportunities and experiences. 

The feeling of being alone faded when I discovered that several celebrities live with Lupus including Selena Gomez and Seal. Now, I know I’m not alone, and for anyone reading this, whatever struggle you’re living through, you are not alone either.