The Unlikely Story of a Lucky Diagnosis, Part 2
Last updated: August 2023
Editor’s note: This is the second article in a 2-part series. The first is “The Unlikely Story of a Lucky Diagnosis, Part 1”
I was diagnosed with stage 4 lupus nephritis. They put me on the highest possible dose of cyclosporine, prednisone, and hydroxychloroquine sulfate. I stayed home another 2 weeks before I resumed school. The side effect of the medication changed my body and face so much that people who knew me before wouldn't recognize me. I had to face the shock in my friends' and relatives' expressions when they could not recognize me. Sometimes I had to reintroduce myself to neighbors who knew me all my life.
Accepting my sick self
Taking 100mg of prednisone turned my face into the shape of a pear, with swollen eyes, nose, and lips. The swelling would move around in my body. One day I would wake up and see it on my neck, the next day, it would be around my knees. Excessive hair started growing on every inch of the skin all over my body and face. Within weeks, my face was covered with thick facial hair, mustache, beard, and the most abundant eyebrows I had seen in my life. My periods stopped for one year. Gastrointestinal issues started bothering me not just during the day but even in my sleep.
I decided that I will accept the fact that medicine has side effects, but I will do whatever is needed to feel better about myself. I started waxing my entire body and face regularly to get rid of the hair. I accepted the pain as part of accepting the disease. The hair was so thick that each time I waxed, my skin bled out of each hair follicle. For a young girl who can be obsessed with how she looks, going back to high school and dealing with the rest of the kids was terrifying. I remember staring at my deformed and hairy face in the mirror, crying and giving myself pep-talks. "You will not look like this forever. It will not be like this forever..." and then I would pull the wax strip off of my cheeks.
Exhaustion from lupus
Feeling exhausted consistently was now my new normal, but at least I had accepted the fatigue is caused by the illness, and it is not my fault if I do not have the energy to hang out with my friends. I started being kinder to myself. That's when I began to learn how to live with this disease. I realized I could not fight it, but I must coexist with it, and for that, the first step is to love myself first.
Living my life with lupus
The first couple of weeks back at school was better than I expected. I knew my classmates would ask, "What happened to your face?" I decided not to hide anything. I figured being open and honest about my condition will help me navigate the new challenges of being sick. I already had a lot on my plate and could not mentally afford the additional stress.
I was surprised to find out how being open and vulnerable made the community of young girls around me so supportive. If they asked for it, I gave them the full story. For every time I mentioned lupus, I got the question: "What is that?" I gave them the answer the doctor gave me, and that was enough to make us move on to the next conversation.
The rest of that year was full of physical, mental, and emotional pain, not just for me, but for my parents too. My parents tried their best to hide their fear and worries. Though, I picked up on their whispering voices through the thin walls of our apartment. I heard my Dad cry silently and listened to my mom console him. I remember one day, my journal entry was only two sentences. "This, too, shall pass. You will figure this out."
Seventeen years later, I still have not figured it out, but I have learned to manage and live the best life I can amidst the ebb and flow of chronic disease.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?