Nicole S. – Diagnosed at Age 46
What started as a hopeful pursuit to grow my family quickly turned into an odyssey marked by pain, emotional and physical suffering, and moments of hopelessness.
In 2020, I did fibroid surgery as part of my fertility treatment. The procedure uncovered 21 fibroids and blocked fallopian tubes. Recovery was arduous, with abdominal discomfort and pain that persisted long after the expected postoperative period. Concerned, my surgeon ordered a series of diagnostic tests, including CT scans and a colonoscopy, to rule out blockages or complications from the surgery. When the results came back negative, I felt some relief, yet I was still plagued by widespread pain, tightness, and a persistent sensation of pins and needles throughout my body.
Sleeping became a struggle, often forcing me to sit upright through the night. I had countless sleepless nights writhing in pain. Over the next three years, I underwent countless tests, MRIs, CT scans, therapies, and procedures, yet the answers remained elusive. Despite the lack of a diagnosis, I kept advocating for myself, convinced that something wasn’t right.
Finally, in December 2023, I was referred to a rheumatologist. By January 2024, bloodwork confirmed I had lupus. Shortly after, I received an additional diagnosis of fibromyalgia. While these diagnoses were difficult to process, they also brought much needed clarity.
Beginning treatment was a mix of relief and optimism. However, finding the right medication and dosage proved to be another journey. I experienced a significant setback after an allergic reaction to a biologic infusion, but with adjustments, we finally, recently found a regimen that works. Today, my lupus flare-ups have become less frequent, and I generally feel better. Still, fatigue and pain remain part of my daily life.
This journey taught me resilience, patience, and the importance of being my own advocate. This experience reinforced the critical role of advocacy in ensuring we receive the care and understanding we deserve. Trusting my body and standing firm in the belief that something was wrong, even when answers seemed out of reach, was the key to unlocking my path to healing. Advocacy is not just about persistence—it’s about believing that your voice matters in every step of your journey.
By advocating for myself, I’ve learned how powerful it can be to support others in their fight for answers, ensuring no one feels alone in their struggles. Pain is real, but so is the strength I’ve discovered within myself.