- Narae Yun experienced finger pain and exhaustion in her early 20s.
- It took years for her to get a lupus diagnosis.
This as-told-to essay is based on a conversation with Narae Yun. It has been edited for length and clarity.
When you think about being a 20-something living and working in New York, you think about a fast-paced lifestyle. I was living that, working at an investment-banking company and going on runs around the Big Apple. When I met friends and family, I appeared vibrant and well.
Behind the scenes, it was a different story. I started experiencing aching fingers. As an athlete who did gymnastics regularly, I was used to aches, pain, and muscle soreness. But this was different.
Looking back years later, I can see there were symptoms that I didn't notice. I slept about 14 hours a day on weekends, for instance. But when you're living with an undiagnosed chronic disease, you don't notice all the little ways it affects your life. You just do the best you can.
I started to seek answers but didn't find any
Eventually, the pain in my fingers was so bad that I spoke with my primary-care doctor. She said I might have carpal tunnel syndrome, but adjusting my desk to positions that typically help with symptoms didn't provide me with relief. I don't blame that doctor. She was suggesting a more-common condition that could have explained my symptoms.
Later, I started experiencing prickling sensations throughout my body. I eventually found out they were caused by nerve damage. Blood work at the time showed I had autoimmune markers. Learning that was terrifying. I didn't know what it meant, but I was a little relieved to know it wasn't in my head.
Lupus, like other autoimmune diseases, is characterized by periods of intense symptoms and ones of fewer symptoms. I once spent nearly six months in bed. At other times, I lived pain-free. When I felt good, it was almost easy to forget about my illness. The human mind is amazing that way.
A distinct rash led to my diagnosis
But when the pain hit, it was unbearable. We're programmed to find a solution to stop pain. If you touch a hot stove, you pull your hand back without thinking. When you have chronic pain, there's seemingly no answer to why you're feeling how you are. That's draining and emotionally scarring.
I spent years researching my symptoms. I knew I had lupus before a doctor ever told me.
During a trip to Puerto Rico with my boyfriend, I finally found proof. A malar rash, also known as a butterfly rash, appeared on my face. The rash is a main sign of lupus. It's also the only symptom that you can physically show doctors. The rash isn't painful, and I found myself thankful to have it because I knew it would help me get a diagnosis.
Sharing my story is still painful
I was finally diagnosed just before the pandemic began. At that point, I was relieved. Just before my diagnosis, I was in so much pain that I couldn't brush my hair or sit on the toilet without help. A diagnosis opened the door to treatment. While there are few treatments specifically for lupus, doctors can treat the symptoms.
That's made a huge difference in my quality of life. I get through my day-to-day and do diversity, equity, and inclusion work that I'm passionate about with a major company.
Sharing my story is still uncomfortable. Waiting for a diagnosis was painful, emotionally and physically. Yet I want more people to know about lupus. That's when we'll find a cure: When people care and resources are put toward research. That's why I've started working with the Lupus Research Alliance to raise awareness.
Right now, I am living with lupus. I'm also healing from the physical and emotional trauma of the past few years. I'm hopeful I can live a long and fulfilling life as someone who has an influence on the world.