Shannon L. - Diagnosed at age 29

In 2020, my health took an unexpected turn when I developed a petechiae rash that spread across my face and body. A trip to the ER led to bloodwork that showed markers for both lupus and von Willebrand disease. At the time, doctors weren't convinced lupus was the cause. The rash was believed to be more closely related to the blood disorder, and after months of monitoring, I was discharged from Rheumatology without a definitive lupus diagnosis.

I continued seeing a hematologist for bruising and bleeding, but otherwise I believed I was in the clear. The rash never returned, and for years lupus felt like a question mark from my past rather than something that would affect my future.

Then, six years later in 2026, everything changed. While recovering from neck surgery, I began experiencing symptoms that felt impossible to ignore. What started as skin issues quickly spiraled into something much bigger. Painful lesions appeared on my scalp and face. My scalp became inflamed and tender. My hair began falling out in alarming amounts. Fatigue settled in so heavily that even simple tasks felt exhausting. My joints ached. The bruising worsened. There were days when it felt like my body was shutting down while life continued moving around me.

What followed was a whirlwind of appointments, bloodwork, specialist visits, medications, questions, and waiting. Countless tests. Countless needles. Countless moments spent refreshing patient portals and waiting for phone calls, hoping for answers while simultaneously fearing them.

A few weeks ago, I finally received the answer.

I was officially diagnosed with lupus.

While the diagnosis wasn't what I hoped for, it provided something I desperately needed: validation. Validation that the symptoms were real. Validation that the exhaustion wasn't simply being overworked. Validation that the pain, lesions, inflammation, hair loss, and countless changes I had been experiencing were connected.

As a full-time teacher, student, and someone constantly on the go, one of the hardest lessons in all of this has been learning to slow down. Lupus doesn't always announce itself in ways people can see. Some days I may look perfectly fine while quietly battling symptoms that make everyday life challenging.

This experience has reminded me how many people are carrying invisible battles.

So if there's one thing this journey has taught me, it's this: give people grace.

You never truly know what someone is facing behind the scenes.