My name is Tonya, and I was diagnosed with lupus in 2022.
My first symptoms appeared a year earlier with inflamed lymph nodes and extreme fatigue. It wasn’t until March 2022, when my symptoms worsened, that I was rushed to the ER and admitted to the hospital. Because of my previously healthy record, the EMTs and ER doctors had a difficult time diagnosing me.
It took a large panel of doctors—including a cardiologist, oncologist, primary care physician, nephrologist, pulmonologist, and others—nearly two weeks to correctly diagnose me. During that time, I underwent multiple procedures just to keep my body from shutting down. My lungs were filled with fluid, which led to pneumonia. My heart began pumping less blood, my kidneys were leaking large amounts of protein, and my blood counts dropped drastically each day. The doctors were hesitant to prescribe steroids, fearing it might worsen my condition.
Eventually, I was moved to the ICU. By day seven, I had lost the ability to walk or speak, although I could still understand everything going on around me. After my final procedure—a colonoscopy—the doctors were still searching for answers. At that point, my body was beginning to shut down completely.
I truly applaud the entire team of doctors who worked on my case, but I also believe a lack of education around lupus delayed my treatment. Out of the entire panel, the one specialist I truly needed was a rheumatologist, and they weren’t involved early enough.
As I’ve become more vocal about my diagnosis, I’ve had fellow AAPI patients reach out to me through social media to share their own stories and concerns. In our culture, illness and healthcare are not commonly talked about. Being sick is sometimes seen as taboo and isn’t typically discussed openly within our communities. I believe this cultural silence contributes to the lack of shared lupus stories among AAPI individuals.
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