I was first diagnosed with lupus when I was about six months pregnant with my son.
For anyone who has been pregnant, you know how many blood tests are done throughout the process. After one of my routine tests, I received a referral to see a rheumatologist. I had never heard of this type of doctor before, so I looked it up. A rheumatologist specializes in disorders of the immune system—conditions like rheumatoid arthritis and lupus.
At my appointment, the doctor explained that I had tested positive for lupus. But because I didn’t have any symptoms at the time, she suggested it might be related to my pregnancy. She told me that if I didn’t develop symptoms within three years, it would likely be considered pregnancy-induced. My husband immediately bought a stack of books about lupus, and we began to educate ourselves. I remember joking with him that maybe I had the kind of lupus that only affects the skin. Unfortunately, that wasn’t the case.
A few days later, the rheumatologist called me personally and said I needed to contact my OB because my blood pressure was high. I was alarmed but didn’t fully grasp the seriousness. When I called my OB/GYN, she told me to come in immediately. Now, fear set in.
My husband was at work in New York City, and I was home alone with my three-year-old daughter. I managed to get my brother to watch her so I could go to the doctor. Upon arrival, my OB took my blood pressure and delivered the news: I needed to be admitted to the hospital for preeclampsia. Imagine sitting there, alone, and hearing you have to go to the hospital right away. I cried. I have always prided myself on being strong and independent, but in that moment, I was utterly terrified.
The doctor reassured me, explaining that they needed to monitor both the baby and me because the high blood pressure put me at risk for a stroke. I spent four weeks on strict bed rest—only allowed to get up to use the bathroom. Standing or walking for any length of time caused my blood pressure to spike dangerously. As a result, my son was born a month early.
This was my first real encounter with lupus actively affecting my body. My immune system was turning against me—and even my baby. Despite being premature, my son was born healthy, and I am forever grateful for that.
Three years later, I noticed that my legs were swelling significantly. I saw my general doctor, who initially dismissed it as age or too much standing—both factors in my life—but I knew something wasn’t right. I was only 33. Swollen legs at that age? It didn’t make sense. My doctor agreed to run more extensive blood work to investigate.
I’ll never forget the day my doctor called. My family and I were en route to a cruise vacation when he asked me to come in immediately. He had found blood and protein in my urine and didn’t think I should travel. Panic surged through me—my vacation was right there on the horizon! He contacted a nephrologist he knew, gave a quick summary, and prescribed medications to start immediately, along with strict instructions: stay out of the sun, avoid raw fish and vegetables, and see the nephrologist upon returning.
After the trip, I went to the nephrologist. That appointment changed everything. I was told my platelet count was dangerously low, which meant I could potentially bleed to death. My kidneys were under threat, and based on my labs, I might be heading toward kidney failure, possibly needing chemotherapy.
Chemo? I was stunned. I didn’t feel sick—I looked okay—but I was seriously ill. I was in shock, almost in a dream-like state, trying to process how I had reached this point. The doctor prescribed blood pressure medication, which I initially resisted. He explained that my high blood pressure, along with my cholesterol levels, protein and blood in my urine, and low platelets, were all consequences of lupus. Once I understood the stakes, I began taking my medication faithfully.
I never needed chemotherapy, but my treatment was intense. I had to take multiple medications three times a day and attend frequent appointments with my rheumatologist, nephrologist, and hematologist—three to four times a month each. Weekly bloodwork, bone marrow biopsies that were excruciatingly painful, and a kidney biopsy that thankfully revealed inflammation but no permanent damage—all became part of my new reality.
During this time, I had moments of deep fear, wondering if I would even live long enough to see my children grow up. It was the most challenging period of my life, and I wouldn’t wish it on anyone. Lupus flares can be devastating—patients may look fine on the outside but are fighting battles invisible to the world. Most people didn’t realize how sick I was, except when they saw the mountain of medications I had to take daily.
If you know someone with lupus who says they’re tired or unwell, believe them. Their struggle is real, even if it isn’t obvious. Thank you for letting me share my journey.
