Tracy W. - Diagnosed at age 24
I'm Tracy, and I have been living with lupus and lupus nephritis for over 20 years. My diagnosis journey did not take years, but it was still traumatic and life changing.
As a teenager and young adult, I occasionally experienced severe joint pain, but nothing that made me think something was seriously wrong. Then everything changed. I began experiencing excruciating joint pain that impacted my ability to work, attend school, and function normally. I kept going back and forth to the doctor looking for answers, but I was repeatedly given pain medication without any real explanation for what was happening to my body.
Eventually, I became frustrated and stopped going because I was missing work and still had no answers. Then one day, the pain became so severe that I passed out.
I was rushed to the emergency room by ambulance and admitted to the hospital. My fever had reached 105 degrees. I was losing oxygen to my brain, had fluid in my lungs and around my heart, and the joint pain had become debilitating. My body was shutting down.
After spending several months in and out of the hospital, I was finally diagnosed with systemic lupus erythematosus (SLE) on my birthday — January 6th.
Two years later, I was diagnosed with lupus nephritis after experiencing severe swelling and edema, protein leaking into my urine, high inflammation levels, and a positive kidney biopsy. Lupus has attacked my kidneys, lungs, cognitive abilities, and my blood cells causing severe anemia. I've received chemo treatments because of lupus, lost mobility and had to relearn how to walk, and I'm permanently disabled.
Living with lupus has impacted every part of my life. The disease is unpredictable, exhausting, and often invisible to others. Some days are manageable, while other days are barely manageable and require rest, adjustments, and grace. Lupus taught me how important it is to advocate for myself, listen to my body, and lean on support when needed.
What has helped me most is community, education, faith, and support. The Lupus Foundation of America has played an important role in my journey through advocacy, education, and support groups. I now serve as a Lupus Ambassador and the Lead Facilitator of the Bay Area Lupus Support Group.
What gives me hope is connection. Every time I meet another lupus warrior, caregiver, or advocate, I’m reminded that none of us are alone in this fight.